Cancer Survivors Network

Just checked on the internet, it is: Malignant Mixed Mullerian tumor or carcinosarcoma. I decided to post here when I noticed your age - I am 34 years old. My mom is diagnosed with uterine cancer - endometrial, and I come to this site to get advice from wonderful women.
Also I posted to celebrate with you, 3.5years of remission, you are cured!!
I wish you the best, even if you don't have an answer from somebody with the same type of cancer, you will get a lot of help in this site, or I think you will give a lot of help since you are a SURVIVOR!!!!!

I also have the above. Two years well now. Am twice your age however!! Did you get other responses?

Hi,
I was diagnosed in Nov. of 2007 with stage 3 MMMT. I went through surgery, chemo and radiation. I was told I had only a 20% change of it coming back. So far so good. I am 54 now. The doctor said if I went 3 years without a reoccurance it wouldn't come back. I have not met or talked with anyone else with this cancer. I have been afraid until now to even look at message boards about it. When I was first diagnosed I read very upsetting stuff on the internet. My doctor said a lot of the studies talked about were 10 years old and treatment has changed. Although she also said there wasn't much information about research and new findings out there. I hope your sister is getting all three types of treatment.

Robin

Hi
I was diagnosed with MMMT last May, and it is so good to 'meet' with others who have the same cancer. I had radical hysterectomy, followed by chemo and radiotherapy. I am doing OK but have a lot of pain, especially in my back and in my legs. I meet with my oncologist tomorrow for results of scans, and am hoping for positive results.
By the way, I realise that this is an American website, but it is the only one that I've found with a forum dealing with issues that relate to me. I am in Scotland, but the cancer is the same!
good luck to you all
sue

Sue...I have to second your comment. I am in NZ and have gained a lot of knowledge and common sense from this site. I did not bother with the internet after the initial look as if this is so rare...little or no research done....how do they come up with data?? From negatives only - not the positives like ourselves. Diagnosed Stage 4 in August 2007 my scans have been unchanged and I intend to stay that way. Neuropathy can result from the radiotherapy and is painful. Celia

I would love to have an update on your progress. I did do some research Wow!!!!! Can they be more negative. From August 2007 to now is a long time. You are cured. Please post. I was stage 1a and is now six months in remission and like all the fine ladies on this site we will remain in remission for ever. Love June

HI
I was diagnosed in August of 2009. Underwent a complete hysterectomy, 3 cycles of chemo [Taxol and Carboplatin], [Sep/Oct]; external radiation [Nov- Dec] for 25 days; internal radiation for 3 days [Dec]. I had a pre-chemo appointment in January to begin the last 3 cycles of chemo, the docs discovered that the cancer had recurred and actually spread to one of my lungs. I was told at the start that this is a rare agressive type of cancer and that it would probably recur. I just did not think it would be so quickly, even before treatment was finished. Needeless to say, my prognosis went from poor to very bad.

In January I started a new chemo protocol of Ifosfamide and Taxol. After the first 3 treatments the tumor had shrunk by 2/3. I have one more treatment left and then another CT scan. Has anyone else been treated with Ifosfamide?

Hi Wonderland: Please give us an update on your progress. I was diagnosed around the same time as you. 6 sessions of carbo/taxol no radiation. I was a stage 1A. This is a rare cancer and very aggressive. But medicine is great now and we can all beat this monster. Looking forward to your post. Be well!!! June
T

Dear June,

Because radiation is usually prescribed, along with chemo, for MMMT, am wondering why you chose (or were prescribed) no radiation, especially since you seem to be doing well.

Best,
RoseyR

Check further down on the thread I did a new message for you. Because I know sometimes it is difficult to find the response. Be well June

Hi Sue: I am six months post op and in remission. Its only this week I found out that the cancer was MMMt. I think the leg and back pain is normal, I also had those symptoms but they are now going away three months after conclusion of chemo. It is an American website and you will find lots of love and really good comforting thoughts. It is through this website that I have learned to ask doctors pertinent questions. I hope the treatment over there in Scotland is as good as here in the USA. Please give us an update on how you are doing. Love and best wishes. June.

Hi June
There are 2 threads with the similar discussions on MMMT. I did reply to you on the other page- I don't want you to think that I had ignored you!
I am doing ok. I am free of the cancer for now, and am so very thankful for that. I am still having a lot of pains - all similar to fibromyalgia my doc says - so I keep taking the pills and am glad to be alive.
My treatment here in Scotland has been wonderful, but no-one is very knowledgeable about MMMT.
I hope you are getting on ok. This is a wonderful website, and I am so thankful to have found it. It's such a comfort to hear from others in similar situations, even though you are so far away.
Love, and God bless you,
Sue

Robin, you are cured, its almost three years. I am 60 and scared to death with this rare cancer. Good the studies are really old and so many people have survived this. We here will all have the same good fortune. I send you good wishes. Please keep in touch. Is there any advice you can give me in terms of diet or herbs? I would greatly appreciate.

Hi Deborah: It is now eight months since my surgery. Stage 1a. I had complete Hyst. and six sessions of carbo/tax. only in June that I found out that it was MMMT. I read your post about your sister and I am really wondering how she is doing. I have also read these other posts and responded to them but no one had replied to me. I e-mailed Carrie and also wrote to her on the site but still no answer. I would greatly appreciate it if you can give me some information on your sister's progress and some tips. Be well June

What is MMMT?

MMMT -- malignant mixed mullerian tumor---a very rare aggressive cancer.

Hi Monique: I was diagnosed in October 2009. Stage 1a in the endometrium. Total hysto, omentom, lymph nodes and the works. I went to the doc on Tuesday and its only then I found out that it was MMMT, then foolishly went home and did some research. I was scared to death. But it is comforting to know that Carrie managed to beat a stage 3 for 3-1/2 years. So can your mom and me. Don't be afraid. It's part of life's circle and life goes on. Be well and please keep us informed about mom's progress. I send you and mom lots of comfort. June.

Hi June, Thank you for sharing your story. I hadn't found someone with stage 1A. The ones I read were stage 1B or C.. My mom already started her treatment.She's having 5 internal radiation treatments and will begin chemo Taxol/Carbo in 2weeks for 6 cycles. It is comforting to read stories like Carrie's, but the internet is really full of negative info about this type of cancer.I am greatful however that it was found on time and is being taken care of. She's being treated at MDAnderson, of what I hear its one of the best cancer centers so she's in good hands. With Gods help we've been able to endure this, my mom has truly been strong since the beginning, and I hope and ask for your prayers she'll keep her strength during her chemo treatments. Hope you continue to do well, God Bless!

I wanted to write to you after seeing your post about your Mom and her journey. Mine is very similar. I am also stage 1A,had a complete hysterectomy 4 weeks ago. I will have 2 radiation treatments as a precaution for reoccurrence, and will then be treated with taxol/carbo. Even though I am 1A, I had lyphovascular invasion inside the uterus. the doctor feels with this type of cancer, I cannot take any chances of some escape of cells out of the uterus. The chemo really scares me. Wondering how your Mom is doing on the carbo/taxel? Wishing her the best and, like me, I'm sure you're all hoping it will all be over after these chemo treatments.

CMadison

My grandmom was just diagnosed today with this rare cancer. We just lost my granddad 2 1/2 months ago and still recovering from that. I was so happy to find this site where people have positive stories. Remaining prayerful!

Hi: How old is grandma? So sorry about grandpa. How is grandma taking that loss. Keep an eye on her she might be really missing him. Please let us know what treatment she will be taking and what stage she is. My prayers go out to you and the family. June

Hi: How old is grandma? So sorry about grandpa. How is grandma taking that loss. Keep an eye on her she might be really missing him. Please let us know what treatment she will be taking and what stage she is. My prayers go out to you and the family. June

Am 71 and diagnosed in April with Stage 4B MMMT. Had complete hysterectomy & now undergoing chemo. Treatment is Taxol & Carboplatin. After 2nd chemo treatment CA 125 test went from 330 to 87 so apparently it is working and ascites seems to be drying up as well. Having problems keeping white cell count up but other than that doing ok.

All the information I read about MMMT is so negative & discouraging it is very helpful to read about those who have the same diagnosis & are doing well.

Let me know how doctors decide to treat your grandmother.

I am so glad to hear from someone who HAD the same condition as me. I have had surgery in November 2009 and its only in June of this year that I really found out what the cancer was. I tried several times to contact the sisters but only heard from Sue in NZ. I have been diagnosed with Stage 1A and had the same treatment as yours. When I found out that the Cancer was MMMT I googled it and much to my surprise was very disappointed with the prognosis. So I have decided that I have been treated and I feel well except for occasional depression. So I am not doing any reasearch any more. I am trying very hard to keep a decent diet. My first Ct and chest xray was negative so I am ned. I was told by my chemo doc that she cannot use ca125 as a marker.
I am not going to let this monster rule my life I have resolved to fight it and keep positive and live my live as I did before. I do hope you are keeping positive, you do sound great. Thanks for sharing your story. May God bless you and give you the strength and courage to continue living a normal life again because you have been treated. Hugs. June. looking forward to hearing from you and others out there.

Thanks for your reply. Curious as to why your Dr. could not use the ca-125 as a marker. My numbers keep going down, yesterday it was 30.9 from 87, & Dr. was very pleased. I just had my 3rd chemo treatment & have 2 more. Possibly the fact that you were stage 1A & I am 4B makes a difference. Great news that your scan & x-ray were negative & I would think that your early diagnosis will make a huge difference in your prognosis.

You are right about the internet. It is a wonderful tool but so difficult to filter all the information. Every time I look up a side effect etc. I become very upset & it can be depressing.

All the best to you & keep up the good diet; it does make a difference.

Cynthia, I am so glad to hear from you and how well you are doing. I have been looking on the board for responses, so far I have heard from SueK, Karma now you. I would love to know how Carrie is doing since she is a 3-1/2 year survivor and also the other ladies on this thread. Thank you again for your response. It seems that you are doing fine. Please try to avoid the internet, its all doom and Gloom. So keep yourself free from the negatives. I know it is easier said than done. Yes, I am doing a lot of herbs and is really watching my diet but the weight is not budging. Be well my love and before you know it the chemo will be over. I never thought that I would see hair again, but it is growing nicely. Thank God!! Please try to keep in touch more often. Best wishes and best of all good health to you!!! June

Thanks for your reply. Good to hear your hair is growing back; I am terrified that mine won't, which is ridiculous since everyone says it will, but can't shake the thought. I am having a problem with neuropathy. Hopefully you are not experiencing that side effect but would love to hear from others who may be dealing with it. Sounds as if you are doing well. Keep up the healthy diet and over time the weight will come off. All the best!

Hello,

My mom was diagnosed with MMMT stage 3 and we are very scared and not really sure what to do. My sister told me to do some research and find other women in her age group that are beating this. I read your comments and if its possible, we would like to communicate with you. You can reach me at aochime@yahoo.com

Thank you,

Anthony

Don't think that is same as what your daughter shows on her pathology.

MMMT -- malignant mixed mullerian tumor. This is what mine shows with carcinosarcoma in parenthesis. My doc told me yes it's aggressive, but a lot of other cancers are too and people are dong quite well. Honestly, I don't think about it as do what I can with my eating, exercise and vitamins. Don't have time to worry as enjoying life, but great to read about many others who are long time survivors....go girls!!!

Jan

Hi:Andy I was diagnosed in October 2009 with MMMT Stage 1a. I had total hyst and six sessions of carb/taxol. In remission. I have been using a lot of green tea, ginger, lemons, tumeric and black pepper and also lots of berry juices.I am so sorry that mom had a reocurrence. I am sure the Docs will recommend something that will work for her. May God bless you and mom and help you guys to make wise decisions. Please keep us informed.

Had a Radical hyst, nodes removed and washing on July 23, my 60th birthday. Path results were Stage 1a MMMT no node involvement, negative washings. My surgical oncologist and Radiation oncologist do not agree on treatment. Going for a second opinion to Sloan in NYC next week. I was told that Chemo did nothing for this cancer, but after visiting this site I am thinking otherwise. Had a bad day yesterday after going to the internet and looking up my cancer. My daughter found this site, and I have been encouraged by some of the stories. Would love to hear from you and others. D

I just wrote you my entire journey but lost it. So I am too tired to write it over again. Real quick, DO NOT GO ON THE INTERNET!!!! I will write you soon. If you would like, because I know how devastated you are you can call me at 201-488-3297 I was there exactly where you are right now. I know how you and your family are feeling. Be well.

Aloha dtrmnd2live! I was diagnosed with 3b MMMT on St. Patrick's Day, 2010. Complete hysterectomy the day after that, and Chemo started on 26 Apr 2010 - for 6 treatments (three weeks apart) which was completed on 23 Aug 2010. I am 51 yrs old. This is a wonderful site, as it makes me feel less alone.

When my hysterectomy was done, they said it didn't spread to my lymphnodes, but there was something near my colon. My Gyn/Oncologist said this type of cancer used to be treated with strictly radiation, then they went for radiation & chemotherapy, and found that chemo worked better than radiation. For the most part, my Chemo treatments were manageable, the fatigue, nausea and loss of appetite became my worst challenges. Treatment was deferred twice because of low blood counts.

I went for my follow-up on 10 Sept 2010 - blood counts are still low, CT scan will follow sometime this month, then my oncologist tells me he is referring me to a Radiology Oncologist for a 'Consultation'. Silly me, thought I could get away with only chemo. I am told that the worst is over (the chemo), but we'll see. My Oncologist said that getting the radiation will not extend my life expectancy, that there will still be a five year window so I am wondering why should I get the radiation.

At any rate, please get your second opinion and do what is best for you. You mention your daughter - I believe since she found this site and has shared it with you, she will be great support for you.

Above all else, HANG IN THERE...they say this is a rare cancer, but there are so many of us out here. I tell myself that since I have something that is so 'rare', I should be special enough to beat this.

My wife has been figthing this for 3 years, she first had stage 3c uterine cancer and had a total hysto. Spelling will not be good so please bare with me. The cancer was 50% thru here urterus and the washing was full of cancer and a lymphnode or two were bad. Then after chemo and radation. Then just prior to here 3 year mark after several months of extreme pain she had a 6-8 cm (grapefruit size) tumor up by her kidney and IVA (arota vein) that was removed with only some sand grane sized pieces on the arota as the DR said it could not be removed. She had 4 rounds of Iflex/something else in the hospital for 4-5 days at a time. She is now getting ready to do 25-28 rounds of radation. They said this time the tumor was mmmt and serious but very treatable. Most of what I read does not sound good but she is a fighter.

I am so sorry to hear about your wife, but I am glad that you found this site. Wonderful women here who are so supportive and so willing to share their experiences and ideas!

It sounds like your wife has been through a lot and am praying that her radiation is just what she needs to knock off those cancer cells! The radiation is not so bad....I had 28 rounds and did find that as the weeks wore on my fatigue was more intense. Also, some GI disturbance but let the radiologist or the nurse know if there are any problems and they can order something to make this better.

Please keep us posted on how she is doing....and am glad to hear she is a fighter. That will go a long way on her road to recovery!

Karen

I have also been recently diagnosed with MMMT. I am 46 and had my hysterectomy/oophorectemy on 7/8/10. Post surgery,I was diagnosed with Stage II carcinosarcoma, my pelvic lymph nodes that were checked all came back negative but my pelvic washings were positive for some atypical cells. My gynocological/oncologist surgeon, my radiation oncologist, & my medical oncologist consulted each other and their associates at Unniversity of Penn Oncology and their recommended treatment for me has been 4 rounds of Chemo (ifosfamide & taxol) to be followed by 5 weeks of external, pelvic radiation and ending with 3 internal radiation treatments.

I too went to the internet for information and was not happy with what I found there. I confronted my doctors with what I found and they stated much of the internet info is old and has been limited by the rarity of this type of cancer. My doctors have been encouraging and have insisted that the treatment plan they have designed for me is to prevent recurrence and to cure me. I have just completed my 3rd round of chemo and I have been very fortunate that I have experiencecd minimal side effects and have been able to continue a, more or less, normal routine of family life and work between my treatments.

I hope some of this information is helpful. Like you, I am just starting this battle with cancer and I too, am looking for all the allies and ammunition I can get to win. Kris

Hi guys: Please write and let us know how you are doing in treatment. Be well everyone. J

I had my follow-up with my radiation oncol today. All is well with me as had my last treatment July /09. I did ask him again about my aggressive type cancer (MMMT) and he explained it has a lot of the same features (??) as ovarian, but is truly uterine. He told me yes it can move around to other body parts/organs, but so many other cancrs will also do the same. No one knows...

My take -- do our part in healing our insides out with proper foods, vitamins, exercise and mind-altering exercises. All of this we have control of, but not the cancer.

So great to read about many of us with this same cancer, are many years out from treatments.

Go have a great day ladies....and keep fighting -- we can win!!
Jan

Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June

Thank you Jan, you sound like such a positive lady. Continue being an asset to this board. Love June

j

Hi,
I am a 52-year-old athlete that was diagnosed with ovarian cancer stage 4 MMMT in November 2009. That was almost a year ago, and after surgery, immediate chemo, and lots of exercise, supplements, sugar-free eating, tons of water, prayers, and good attitude.....i recurred pretty quickly. So disappointing! But as Jazzy1 said, I think if I had not tried so hard to get back to my normally healthy self, I wouldn't now be so strong and ready to fight again as I start my second chemotherapy. I still bike and hike, garden and work, and never felt better. Hard to believe I actually had more tumors growing all this time that I thought I was in remission. My oncologist said 10 years ago these heavy-duty meds weren't even available, so I'm tickled to be alive. "Chemo is our friend," I keep quoting, even though it is killing me; so that I can keep living! Wow what a rare disease, isn't it! How in the world did any of us end up with this?

Hope you are doing alright. June

Hope you are doing alright. June

I thought I would share with everyone that I have now completed my treatment regimen. I had my surgery in July, my chemo treatments during August - October, my external radiation treatments started in October and continued all of November, and I just finished my third and final internal radiation treatment on December 29th. I was fortunate and experienced minimal side effects. Chemo caused me to lose my hair and I had some minor nausea, my radiation treatments played a little havoc with my bowels, and, naturally, there was some fatigue. However, I continued to work during my treatments and only missed days when I felt I could not perform my job responsibilities adequately.

I am starting 2011 with my treatments behind me but now I feel like I am on watch. I am scheduled to have my first set of scans by mid January and I have multiple follow up appointments already set. I confess that this part is going to be a little difficult for me. The waiting to see if the treatments worked will cause me some anxious moments I think. I tend to be a positive person and I am feeling good, but I never felt bad before my diagnosis either.

I am going to try to focus on living my life as normally and productively as I can since this is what I can control. I have a wonderful family which includes three children who I am fortunate enough to be close to and involved with despite the fact that they are 20, 18, & 15 (all ages when kids tend to distance themselves from parents). I am also fortunate with respect to my job because it is more than work to me,it is a mission. I work as a domestic violence, legal advocate & counselor and have been blessed to meet,help & serve many courageous, wonderful women doing my "job" and I hope to continue in my efforts for a long time to come.

I see every day what women can accomplish under very difficult and stressful circumstances with belief in themselves and a solid support system. The inspiration they give and the courage they demonstrate will continue to help me as I help them. Kris

Hi Kris
Well done on finishing your treatments! You are a stage ahead of me - I start my chemo on Tuesday. It's encouraging to learn of your ezperience of treatments - that you continued to work and live normally as far as possible. That's what I will try to do as well. Good luck with your tests as they come up - please let us know how you get on
Take care
Susan

Hi Susan,

I guess you are undergoing your chemo treatments now. I hope all is going well and you are experiencing minimal side effects. I am recovering from all the side effects I experienced during chemo and radiation. My hair is back and, apparently, I am in style with my very short hair since the pixie cuts have become the style of choice for many celebs lately.

I just had my first set of pet scans last week and the results are in: I got the all clear!!! I had a couple of anxious days waitng for the results but what a relief when the doctor told me there was no sign of cancer. Of course there will be many more scans to look forward to but that is the goal isn't it? To be able to keep looking and moving forward.

I am back to my full work schedule and I have returned to my volunteer work as well. I still combat the fatigue now and then but, overall, life is good. I hope your treatments go well and I look forward to hearing about your experience.

Keep smiling!
Kristine

Dear Kris,

Congratulations on finishing so much treatment and having good news on your recent scans.

As I will be treated where you were, would like to know how MUCH "havoc" your radiation has created with your intestines.
(Need to decide whether to have just brachy or add IMRT full-pelvic to the regimen. Am a bit afraid of the full pelvic (scheduled for April and May) because need to go back to work in September. (How bad or frequent is your diahrrhea? Can you still eat whole grains and cooked vegetables? Do you have any hip pain? Neuropathy in hands or feet?)

Thank you so much,
Rosey

Hi Rosey,

My intestinal side effect of diarrhea began during week 2 of my external radiation treatments and continued for the duration of my radiation treatments. I did alter my diet to exclude most foods we are usually encouraged to eat (fruits, vegetables, whole grains). The diarrhea ocurred daily and several times a day while I was undergoing treatment (despite the modified diet) and continued for a short period of time after my treatments had concluded. I was instructed to utilize immodium in an effort to combat the diarrhea but this would cause me to become constipated which was very uncomfortable. I persevered and developed my on coping skills, especially when I was at work. I did find different foods minimized the number of occurrences in a day which was helpful in my effort to keep working during treatments.

About a month after my treatments concluded, the diarrhea was gone and I had resumed a normal diet again. I did not experience any hip pain or neuropathy. I consider myself lucky that this was the only difficulty I had. Of course I did not venture far from home when I was experiencing all this fun and when I did go some place, knowing the location and accessibility of the bathroom was of utmost importance!

I hope this information is helpful to you. Let me know what you decide to do and how your treatments progress. Good Luck!
Kris

Kris,

Thanks so much; it's encouraging.

One final question: did you have IMRT or EBRT as your full pelvic radiation?

And I assume you had a final round, after radiation, of taxol/carbo?

Rosely

Hi Rose,

My pelvic radiation was IMRT followed by the brachytherapy. My radiation was not sandwiched by my chemo. I had all my rounds of chemo up front and my chemo drug combination was ifosfamide/taxol. I did not have the taxol/carbo combination.

Hope all goes well.
Kris

My wife (72) was told she has stage 4 MMMT in June 2010. We went to Sloan in NY. Was very disappointed with DR. and response. There is a women DR.there that knows something about MMMT. We saw the wrong DR.Veach, He did no special test, did not return my e-mails and it took over a month to get his report.

We went to Hillman Cancer Center (11/18/10) in Pittsburgh, DR. Edwards has seen over 70 MMMT case. Very knowledgeable My wife had a complete hysterectomy in 1977. She had a 6 cm growth removed on 8/24/10. and it is coming back already. She is suppose to go back Dec 7 to be opened up and the have the Chemo wash. Then 6 months of Chemo after that.

Wish you the best of luck and God be with you.

Bud

Where is the growth? Did she have chemo for the growth when they removed it? Okay, I am sure you are now in better hands. Some of these Docs are only interested in seeing as much patients in one day in order to make $$$$ so they don't take the time to really take care of you. I am glad that you immediately found a really good Doc. I am strongly thinking of seeing another doc just for a second opinion. I was dx in 2009, total hyst. All is well to date. Please keep in touch especially since this is a rare cancer, I would like to get updates. May our Great God be with you at this time and give you the strength and wisdom to deal with this dreaded disease. June.

My mom has been on Avastin and it did help for a while. Now she's on some other drug due to resistence / toxity.

She still has 2 big masses in tummy and mets in lungs.

Our doc will continue with some other chemo drug next week, but other docs who i go for 2nd opinion are giving up.

for those ladies on this site who have very late stage / recurrance ladies and is in remission now - can i know what drug you used? did you do surgery? how long did it take for the tumor to grow again (if unfortunately it came back) after surgery?

So sorry, I do not have much information for you, because I was stage 1a and had a total hyst. These cancers are very aggressive and you never know when it will show up its ugly face. Please do not give up with mom, tell them to try everything they have. Maybe
someone else on the board will be able to give you some good advice. My prayers are with you and mom. Keep up the good work. J.

Hello everyone
I had written confirmation today that I have a uterine carcinosarcoma Stage 1a, after meeting with a second consultant last week to discuss further treatment. I had total hysterectomy with lymph node dissection and washings on November 10 - lymph nodes and washings clear and tumour very small. Till last week, I assumed it was a grade 3 adenocarcinoma because all my consulations - from endometrial biopsy onwards - said grade 3 and adenocarcinoma is the most common type. I was told last week - now confirmed - that the possibility of distant recurrence is around 30% and I can either opt for follow up or 6 rounds of carboplatin and taxol but there is no guarantee that the latter will improve my chances as trials have not been done (but the consultant hinted to me that her feeling was that it might halve the chances of recurrence but she has been careful to say that there is no level 1 evidence of this). I have signed up to the chemo! I've recovered better than I thought from the surgery - thought I had put it all behind me (apart from being warned that grade 3 is 'unpredictable') Till I saw the second doctor (my surgeon having said chemo might be helpful) I thought the only way ahead was to try to get onto the PORTEC-3 trial which would have given radiotherapy plus or minus the chemo. But I am not eligible for that, and apparently I don't need the radiotherapy at present (they would do it for a local recurrence). My internet research on this has made very dismal reading - as some of you have said. It's making me start to re-think lots of things. I am 60 and I was hoping to carry on working till I am 65 (I am a freelance journalist) - now I am wondering, do I retire early, call in the pension? Set my affairs in order? (of course, they should already be in order!)
I am based in London, UK. I noticed one lady on this forum is in Scotland. Are we the only two people in the UK with this? I have nothing but praise for the way I've been treated thus far - I don't blame anyone for not picking up the carcinosarcoma Dx straight off.
Take care and happy Christmas. Hope to hear from some of you in due course.
Sue

Hi Susanna sorry you had to join us. i am also 60 years and was dx in Nov 2009. Stage 1a grade 3. Total hyst and 6 sessions of chemo. No radiation. It does make you look at life differently. I am no longer working and I really don't care to go back, but I do miss the working life. The internet preaches doom and gloom so I would stay away from that. I hope you managing to cope and don't let this disease rule your life. You are the best judge whether you should continue to work or not. Believe it I still have not gotten my affairs in order (laugh). Anyway, I wish you all the best and pray that our Great Creator give you the wisdom in order to make the right decisions. Chat with you later! J.

Dear June
Thanks very much for replying to my post. I hope you had a good Christmas! Have you seen the MMMT group on yahoo? I have joined that also - got a couple of replies from ladies suggesting that the chemo is the way to go. I have the kidney function test this morning and hope to get a start date this week (we have a number of bank holidays in the UK around this time and really everything is not back to normal until Jan 4).
What vitamins do you take? I am on vitamin D3. I agree with the berry juices, green tea etc - did you get any specific nutritional advice from someone or did you do your own research?
Take care
Sue

I'm replying to the latest comment since this blog has continued for so long. I am currently 59 years old and will celebrate my 60th birthday in July. I never thought I'd see 55 years old!
I was diagnosed with MMMT (I've never heard this accronym before!) 3C in March 2006. I had 6 rounds of chemo and 30 doses of 8 fields of radiation each time and 3 internal doses of radiation. I was given until the end of the year (2006) to live. This March will be 5 years since my initial surgery/treatment. DO NOT EVER GIVE UP!!!! I was sure my life was over but I've lived through the birth of 4 additional grandchildren, travel to Europe, Hawaii and many other places. I read all of the horror stories on-line - thinking my life was over. But no one really knows, do they? So, continue to grab all the life you can!!!!!
Prayers and best wishes to all of you!!!
Diane

You're such an inspiration that we can endure, even when statistics have us in the ground way too soon. I live my life very optimistically and believe my higher power will allow me to enjoy a wonderful and long life.

I completed my treatments (for MMMT) July '09 and have been NED since....knocking on wood now!! I think so much of this is truly luck. My only way of control is with how I now take care of my body thru exercise, organic/whole foods and lots of laughing and positive thoughts.

Good luck to you and hope you're NED for another 20 years!
Jan

Thanks for the encouragement!!! Diane you are doing great, you are cured. Jan, I always read your posts, keep up the good work. Let's all continue to be NED. I am so sorry to hear about our dear friend Linda, but I don't want to start worrying because I know she will come up with a great plan!!! Love to all. June

Hello dlustrous1.....your story sounds so much like mine. I would like to communicate with you directly. Could you send me an email at sue.remington@comcast.net

Here is my story.
Hi, my name is Sue, I am 57 and I am new to the group. I started spotting Nov 18, 2010. It was brown and not very much. I thought I had over lifted when pitching hay to the horses. However, the next day the toilet was a bright red. On November 22, 2010 I had an ultra sound and an 8 cm tumor setting above my vagina and to the right was discovered. My CA125 level was at 239 and they suspected colon cancer or some type of gyn cancer or both. A Dec 22 date was set for surgery. I left to go back East to help my daughter get thru finals and ended up in the emergency ward Dec 6th because the tumor had wrapped itself around the right ureter and was causing severe hydronephrosis. I had surgery Dec 11, 2010 and was diagnosed with mullerian ovarian cancer stage 3c. This was a shock to me since I had a complete hysterectomy almost 8 years prior and was told I never had to worry about cervical, uterine or ovarian cancer. My cancer was due to an ovarian remnant. 2 out of 24 lymph nodes were positive for cancer. They removed my omentum and it was negative. The tumor had adhered itself to the right ureter, my bladder and all thru my intestines. The doctor scraped and washed those areas. The washings were positive for cancer. Dec 29th was my first chemo treatment of carboplatin/Toxil. After my first round, my CA125 level dropped to 14. After the second treatment it dropped to 10. I have a doctor’s appointment on March 1st.
I see where so many women received radiation as well as the chemo therapy. Articles seem to indicate a higher success rate. Is there a reason why some doctors administer radiation and others do not? Does anyone have a similar case as mine that has received radiation?
Back in Sept/Oct 2010, I went on a 21 day fast of water and a glass of orange juice each day. One of many things I prayed for was that the Lord would make me healthy. After the fast, but before the bleeding started, the Lord asked me if I was willing to part with my hair. It was blond, healthy and past my waist. I told the Lord yes not really understanding why He would ask that of me. Less than 2 months later my hair was gone from the chemo treatments.
When I finally got to return home to Colorado on January 7, 2011, I did as James 5:14-15 directed me to do and went directly to my church for prayer. I know that the Lord has written this into my story and I have peace knowing that He has my life under control. However things turn out I am in a win situation. My husband of 38 years is having a hard time and I would appreciate prayer for him. I tell him I am a daughter of the Most High and that the Lord loves me more than anyone else could. I know the Lord has my best interest at heart. I would love to see my kids graduate from college someday. I would love to see my grandbabies and tell them how awesome God is and how much I love them. I feel so privileged to even exist. I am believing in a miracle as to my healing. For truly our conditions lie in His hands. Hope and faith are an amazing thing. Meeting Jesus and our Heavenly Father someday will be the greatest day of my life! Right now I am treasuring each day here.
I am so thankful this website exists. It brings hope. We as prayer warriors have much work to do and I will be praying for all of you.
Much love to all,
Sue

Sue I am fascinated by your story. When I was sick, my husband became sick shortly after so keep an eye him. Off course, you are going to see your kids graduate from college and you will certainly see your grands. You seem to be quite a spiritual person and that means a lot. I do know the scripture you mentioned “Let him call the older men of the congregation to him, and let them pray over him, greasing him with oil in the name of Jehovah. And the prayer of faith will make the indisposed one well, and Jehovah will raise him up.” (this scripture I though was specifically for wrong doers, in order for them to come back to God, please explain) What has peeked my curiosity though is "how did the Lord communicate with you about losing your hair and what if you had replied negatively, I wonder what would have happened. Off course faith and prayers and hope are amazing. Please let me know what your religion is. My sincerest best for you and your husband. Speedy recovery and Good health to you both. J.

Diane,

You are in inspiration! Can you tell us whether you had your six rounds of chemo as a "sandwich" with radiation inbetween or sequentially, with radiation afterwards? And did you take any other measures of your own (nutritional or otherwise) to bolster your survival?

Thanks so much,

Rosey R.

I had the chemo treatment first and then followed with the radiation, external and internal. I try and eat well, but with the radiation scarring, I have bouts of intestinal blockage so fresh fruits and vegetables, seeds, nuts and all of the good fiber foods we should be eating are a no no for me. In all honesty, I never thought I would still be around so eating is one of my pleasures and I haven't limited what I eat other than those I mentioned before. I am going to have a PET scan since I have just hit my 5-year "birthday" and truly, am scared to death. I don't think the fear ever diminishes. I wish you luck with everything...life is precious. Remember to enjoy each day...blessings to you and yours...

Diane,

Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."

Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?

Thanks,
Rosey

Diane,

Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."

Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?

Thanks,
Rosey

Diane,

Scrolling back through these posts, saw this message again. You say you "havn't limited what I eat other than those I mentioned before."

Can you let us know what foods you've limited? (I can't find the answer in prior posts and your long remission from this cancer i'm sure inspires many. So we'd love to know what foods you've limited. I assume you can't eat raw fruits and vegetables now?

Thanks,
Rosey

I'm so glad to find this site and feel like part of a "community" with this rare form of cancer. At my annual physical in February I told my doc I had some hip pain. To her credit, she quickly ordered the right tests and within a couple of weeks I was diagnosed with Stage IV MMMT ovarian cancer. PET scan showed a lesion on the hip bone, but also lymph node spread to lung and a handful of abdominal sites. CA-125 was 850, went up to 1350 right before first chemo. After 3 chemo doses, it's down to 250 and new PET scan shows the hypermetabolic activity has stopped. Most spots have shrunk to half their size, except the ovarian mass which is still 10 cm. Prescribed another 3 doses of chemo (Taxol and Carboplatinum) to hopefully knock down the mets before surgery. So far, able to work which has been invaluable in terms of sanity, as well as of course, health insurance. Eager to hear from others and share this battle together!!

By the way, I'm 49 years old and thought my lack of periods and slight pelvic discomfort was just the onset of menopause. We need more publicity to encourage early detection!!

My mom was just diagnosed with MMMT... She is 49 as well. She is coming here to vegas soon.. it's just so hard because I do not have all of her diagnosis on me and I do know she had a full hystorectomy, and is at Stage 3 1 or something and the cancer had spread to her lymphnodes. I wish I could be with her, but am happy she is coming to Las Vegas soon. Please help me on bringing more awareness to people!

http://www.facebook.com/pages/MMMT-Cancer/149687828435913?v=wall

or find on facebook MMMT Cancer
Velvette Buckley

Dear Tundraotter,

Just want you to know that at the major cancer center where I'm being treated (MMMT), my radiological oncologist reports that they have several patients who are doing "very well" with even this aggressive cancer, so don't give up hope.

Have you seen the posts by Dilustrous? She too was diagnosed at an advanced stage yet is still alive after five years.

Hope youre getting treatment at a great center. Just try to enjoy every day as much as you can while feeling OK.

Love,
Rosey

Dear Tundraotter,

Just want you to know that at the major cancer center where I'm being treated (MMMT), my radiological oncologist reports that they have several patients who are doing "very well" with even this aggressive cancer, so don't give up hope.

Have you seen the posts by Dilustrous? She too was diagnosed at an advanced stage yet is still alive after five years.

Hope youre getting treatment at a great center. Just try to enjoy every day as much as you can while feeling OK.

Love,
Rosey

Dear NSM424,

So sorry to hear of your mom's diagnosis.

Yes, MMMT (now known more commonly as "carcinosarcoma") is a very aggressive cancer but there ARE some patients who, even diagnosed at stage 3, are still alive four to five years later.

Scroll back to read comments by "Dilustrous," for example, who was diagnosed with srage 3C in 2006, given about a year to live yet five years later is still doing fine.

Try to be sure your mom is getting treated at a major cancer center, advise her to stop eating sugar as much as possible, and look into dietary recommendations in books by James Quillen and Michael Murray, major nutritionists who know a lot about cancer and nutrition. A very optimistic book called Anti-Cancer will also help with diet. Its author, a psychiatrist adn scientist, managed to keep even a lethal brain cancer at bay for nearly twenty years (although he has finally had a recurrence after all that time) through nutritional vigilance.

Best,
Rosey

In November 2009 my wife noticed spotting and went to her ob/gyn. She was 68 at the time.
she was diagnosed by biopsy with uterine cancer..

She was referred to Mt Sinai Hospital and met with the head of the oncology gynacology department.

in early December she has surgery and her uteris , ovaries and about 12 lymph nodes removed.

After biopsy they found mmmt cancer with rhabdoid cells in 95 percent of her uteris and 7 lymph nodes, Stage 3

In January She then went through 6 rounds of chemo each lasting 24 hours for 4 days each of taxol and isofosomide,plus a number of preventative drugs. the on the 5th day she received an injection ( iforgot the name) it increases her white blood cells very painful and costs $4500- for the one injection, thank god for medicare.

in July she finished her Chemo and had another pet scan, more lymph nodes were hot. she then went through 25 rounds of radiation and internal radion, the new type of focused radiation. 4 months later her pet scan was clean. that was about march 2011.
We were so happy it was clean.

Unfortunately last week after 5 months later there are now 5 new lymph nodes that are hot and something on her bladder.

She is beside herself as she does not want to lose her hair again and suffer tyhrough chemo this time of taxol and carbol(sp).

anyone had this experience? Any suggesdtion?
Thanks
Kimberlite

Dear Kimberlite,

Am so sorry to hear of your wife's diagnosis and ordeal.

Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)

I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.

Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)

If it's fear of her chemo that's the main problem right now, here's what I'd recommend.

If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.

What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.

1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo

2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!

3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!

4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.

5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).

6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).

With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.

Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.

Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.

And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.

Best,
Rosey

Dear RoseyR

So you never lost your hair from chemo? Good for you! Any idea which supplement helped you not go bald? I would love to know.

thanks,

Carolen

Carolen,

Sorry: side effects to me meant nausea, flulike symptoms, mouth sores, peripheral neuropathy, and fatigue.
I had none of those.

But I did lose my hair after the second round of carbo-taxol. (Curiously haven't lost any more of it after round 5 and 6, however; it's now half an inch long and my last treatment was two weeks ago.)

I am so unconcerned about hair loss that I neglected to mention it as a "side effect."

Sorry,

Rosey

Dear Kimberlite,

Am so sorry to hear of your wife's diagnosis and ordeal.

Would like to offer a hint of hope here: and that is that taxol and carboplatin should be an EASIER chemo regime than the one she last had. (My own onc told me that ifosamide is definitely "harder on you" than carboplatin and taxol.)

I myself have had five rounds of carbo/taxol and so far--I am not exaggerating--NO side effects.

Of course your wife has already been a bit debilitated by a prior chemo regimen so I won't pretend that may not play some role in her response to upcoming treatment. (But I too, by the way, had 25 external radiation treatments of my pelvis after the first three rounds of chemo--and still had no side effects from the fourth and fifth rounds of chemo.)

If it's fear of her chemo that's the main problem right now, here's what I'd recommend.

If she can see an integrative doctor who will prescribe a few supplements for her, your med insurance will pay for office visits
if not for the supplements.

What my integrative doctor prescribed during treatment with taxol/carbo were the following--all availalbe online, by the way.

1) glutamine (a white powdery amino acid), inexpensive
one teaspoon, three times a day, in a glass of water before meals. Start a day before chemo and continue first three days OF chemo. Helps to prevent neuropathy in hands and feet and protects intestines from the chemo

2) fish oil (two to three teaspoons a day AFTER meals) (best brand "Finest Fish Oil by Pharmax)
Helps to protect the intestines and prevent appetite loss. This brand has NO fishy flavor at all! Orange is in it to prevent that.
Research also shows that fish oil helps the taxol to work more effectively!

3) ProGreens (comes in a jar, refrigerate after opening)
Take one scoop each morning before breakfast in a glass of water. Don't let the green color deceive you; it does not taste bad at all. Not good, but not bad! And it's a powerhouse of protective ingredients that fortifies your system against the assaults of chemo. Helps to prevent that horrible constipation most experience during chemo and protects intestines.
If your wife can't eat a lot of green vegetables during chemo, this supplement will supply her with all the nutrients she needs that come from greens!

4) Two multivitamins a day (one, twice a day with meals) - brand, "Nutrient 950" (contains no copper or iron which many researchers believe promote metastasis). Available online and not too expensive. Once she's done chemo and treatment, take two, three times a day.

5) AHCC (two capsules three times a day or three twice a day) brand Protocols for Life.
This is a mushroom extract given to nearly all chemo patients in Japan. Helps soften the effects of chemo and bolsters your killer T-cells (the ones that attack cancer). Problem: it IS expensive: eighty dollars a bottle, and at this dosage, you'd need three bottles a month. You could lower dose to four a day to ease the expense. If you dont take AHCC, you could try Maitake D fraction (half as expensive).

6) Optional: 200 to 400 mgs of vitamin E succinate a day (esp if you fear or are develoopoing numbness or tingling in the extremities).

With just these supplements, I went through five rounds of carbo/taxol with nearly NO side effects: no vomiting, not even nausea, no numbness or tingling in hands and feet, no mouth sores, not even much fatigue.

Finally: While on taxol your wife MUST, in my opinion, take curcumin. Best brand is probably Life Extension's Bio Super Curcumin. She should take two capsules a day WITH meals. Why essential? To prevent an inflammatory response to taxol and to help taxol to work better. There's been some rsearch from Dr. Aggarwal, of MD Anderson about the danger that taxol may, while very good at eliminating any current tumors, may "spread" a few microscopic cells throughout the body; curcumin, his research shows, has been shown to prevent that from happening.

Finally: Please refer to my post under "best books read" near the top of the subject index; I"ve just listed some that were most valuable.

And do take some heart: there HAVE been patients even with Stage IIIC cancer of your wife's sort that have survived far longer than predicted.

Best,
Rosey

Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite

Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite

Has anyone heard of the phase 2 clinical trial of this drug
at Colorodo State or Sloan Kettering?
thanks
Kimberlite

Kimberlite,

Will now try to research this trial and new drug. Have you heard promising things about it?

Rosey

Kimberlite,

Will now try to research this trial and new drug. Have you heard promising things about it?

Rosey

I did 2 28 day cycles with this clinical trial after witch my CT should increased Lymph node activity as well as growth of the tumor in my liver and a new spot. They are now suggesting a clinical trial of Ixabepilone Phase II.
I had 9 rounds of Carboplatin and Taxol. Which shrunk the tumors and put lymph nodes into remission. But at the end of 9 the tumors were once again active so that is when I went to the Panzopanib.
Will be anxious to know how this worked for you
bkramer0412

Rosey, have you continued taking any of the supplements you listed above, now that you have finished chemo? If so, which ones and in which dosage?

Is your integrative medicine doctor at Penn or elsewhere?

thanks
JOANN

Dear JOANN,

Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:

ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals

I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:

3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)

All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.

NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.

But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.

I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.

Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.

Warmly,
Rosey

Dear JOANN,

Having just finished treatment (for at least a year or two, let's hope!), including three rounds of taxol/carbo, 25 external pelvic radiation treatments, and three more sessions of taxol/carbo, I continue to take the following:

ProGreens (one scoop in glass of water before breakfast)
multivitamin (Formula 950, without copper or iron), two a day
curcumin (brand is SuperBiocurcumin, highly absorbable, by Life Extension, 2 capsules with meals each day)
sylibin (derivative of milk thistle that protects liver), two a day with meals

I WOULD have continued, as well, with the following but my platelets dropped so low at end of treatment that couldn't risk any more bloodthinning supplements:

3 tsps of "Finest Pure Fish Oil" a day after meals by Pharmax
200-400 mgs a day of dry Vitamin E (vitamin E succinate)
astragalus (esp good when your neutrophils are low; helps to ward off infections; also helps chemo to be more effective),
2 capsules twice or three times a day between meals, brand is GAIA (60 caps per bottle)

All were prescribed by my integrative physician, Dr. Stephen Rosenzweig in Philadelphia.

NO way my onc would have approved; like most American oncologists, she told me "NO supplements but a multivitamin." Nine months of my own research and Rosenzweig's advice (MD from U Penn who studied in Eastern Europe afterwards for six years) persuaded me that supps ARE the way to go.

But hadn't realized, when platelets were falling, that fish ol and E tend to thin the blood a bit--so I cut back on them during my last round of chemo. (In effect, all my dietary habits--lots of green tea, blueberries each morning in oatmeal, little red meat, lots of garlic, ginger, curcumin--ALL have a blood thinning effect--equivalent to fewer platelets. According to Dr. Keith Block, thin blood is exactly what you WANT if you have cancer because "thick blood" (dense platelets) encourages metastasis. But when your platelets fell as low as mine, you risk bleeding a bit--so I recently cut out blood-thinning supps except for curcumin, which I'm convinced is essential to stopping the capacity of taxol to CAUSE metastasis.

I'm due to see my integrative doctor in ten days and recall his advising that when I'm done treatment, he wants to boost the antioxidants (C, E, etc). Am even considering intravenous Vitamin C if I can afford a few treatments, for have read of several patients of Dr. Jeanne Drisko with ovarian cancer, stage 3C, who took vitamins similar to the ones I've been taking during chemo and afterwards had a lot of intravenous C--and three years later, are NED!!! (Major studies are going on to examine the role of antioxidants during treatment for gynecological cancers but in the meantime I prefer to TRY to use them.

Please refresh my memory on your own diagnosis. And do you leave near Phila? If so, and would like to meet for lunch sometime, let me know. Did nine months of my own research on rare uterine cancers because I have great medical leave where I work. During recovery from hysterectomy and subsequent treatment I read, read, read. And kept notes.

Warmly,
Rosey

Rosey.......Only having blood work done every three months (after treatment is over), how does one know if one's blood is thick or thin?

JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

JoAnn,

The impression I have from Keith Block's book (Life Over Cancer) is that the higher one's platelet count, the thicker the blood; the lower the platelet count, the thinner the blood. Obviously one doesn't want counts so low (under 100) that one will easily bleed--but neither does one want very high platelet counts.

Unless I've misread Block, that was my impression.

Best,
Rosey

sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric

I was on the drug for two twenty eight day cycles. I had no side effects. However my rumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I begin a new clinical trial the 28th of September. Barb

I was on the drug for two twenty eight day cycles. I had no side effects. However my tumors became more active. I was in phase 2 of the clinical trial at Dr Sharma's office in Hinsdale, IL. I was on the drug August and July of 2011. I begin a new clinical trial the 28th of September. Barb

sorry it didn't work for you.
howlong ago did you use this drug and at what hospital?
thanks
eric

Madcoast,

Thanks for the info and glad you are NED. You signed off "NED without chemo and proud" - however Avastin is on my list of chemotherapy agents. I'm confused. Mary Ann

I think when someone uses the term "chemo," it is in reference to the anti-metabolic agents that damage healthy cells along with malignant cells.

Avastin is a monoclonal antibody that falls in the category of "targeted biological therapy." It is an anti-neoangiogenesis agent (supposed to stop the growth of new blood vessels that feed cancer).

I wouldn't consider Avastin to be "chemotherapy" just because it is used to treat cancer.

Carolenk,

Read carefully your sequence of chosen treatments since diagnosis of IIIB in 2009; clearly, you've done well.

And should I have a recurrence of my own Stage IB MMMT (60% myometrial invasion but 20 clear pelvic lymph nodes and clear margins) diagnosed a year ago, am not sure I will go the traditional chemo/rad route--for many of the reasons you cite.

In fact, am considering starting intravenous C ASAP--for it's been a month since my last chemo. Used my summer off as a college instructor to pursue some research and saw fascinating studies done by Jeanne Drisko (U of Kansas) re two women with, get this, stage IIIC ovarian cancer who didn't follow oncs' instructions--and DID take antioxidants during chemo, notably Co-Q 10, C, E succinate, carotenes--and AFTER treatment refused further 'consolidation chemo" in favor of intravenous C.

Three years later, they were both NED!

Granted, I don't know whether their cancers were MMMT, or serous, or papillary, but stage IIIC ovarian cancers are rarely NED after three years regardless of what treatment one has chosen. Moreover, I've found that there are affinities between some forms of uterine and ovarian cancers. (As you likely know, there is MMMT of the ovary, not merely the uterus.)

Am sorry to hear your vaginal brachyterapy sessions (six are a LOT) were so hard on you. Indeed, my own radiological onc--although she at first thought I'd have both external and internal radiation treatment--restricted it to external for two reasons:
"Your tumor wasn't that close to your cervix"; "I've designed the external radiation to target your vaginal vault in addition to other targets"; and "I'm finding more and more that vaginal brachytherapy is too toxic for many of my patients." (This is at a center termed by ACS "one of the top ten in America," by the way.) However, should I have a recurrence in vaginal vault, I'll of course blame her for changing her mind on the treatment!

A vital QUESTION: How expensive were your intravenous treatments? How often did you have them? And for how long a period? (I have great med benefits but as you know, they won't cover intravenous C.)

Finally: I had four teeth extracted right before chemo: two, wisdom teeth but two others that happened, coincidentally, to be molars with prior root canals: chronic sources of inflammation. Felt curiously better, more energetic, within a DAY of these extractions and am thinking of sking my dentist to pull any other molar that had a root canal.

Best,
Rosey

I've read of the correlation between root canals and cancer. amalgam fillings are also of grave cause for concern. Better fewer teeth than mostly dead, eh?

Like your style of writing.

claudia

when i first started the intensive bio detox program (for a month), i did intravenous L Gluthathione, Alpha Lipoic Acid, and vitamin C (and others) twice a week (taking a total of 2 hours for the infusions). I know return every 2-3 weeks for a day: IVs, oxygen therapy (have actually been considering doing time in a hyperbaric chamber) and 2-3 hours of infrared sauna. The IVs were about $120 a pop
I have a great health insurance policy but it does not pay for anything that does not benefit big pharma (dont get me started on that one)...so it only paid for a wee bit of the bio detox...and a very wee bit of amalgam removal and root canal removals.
If you have an enlightened dentist, you should also ask about 'peridontal legiments' that were left behind if you had pulled wisdom teeth earlier in life. Most dentists just yank the tooth and dont remove that ligament which attaches the tooth to your blood stream...so they are often left to rot at the bottom of the healed over cavity...providing a lovely and continuing cesspool for inflammation. Cancer is inflammation...thats why curcumin (turmeric) works so well...along with other anti inflammation approaches.

I have felt quite a bit of hubris over attaching the 'proud of no chemo' statement...but everything about the cancer industry is so bullish on expensive treatments with limited effectiveness.

If we were in germany or switzerland....our chemo would be custom designed based on both our personal DNA as well as the cancer cell DNA....and then administered while you were in a hyperthermic chamber...since that superheat would cause the cancer cells to agitate and thus the chemo agent would go more directly to those cells and not over your whole body. This specialized approach is just now coming to the US, twenty years later.

Avastin, in my research IS CONSIDERED chemotherapy. There are many TYPES of chemotherapy. Avastin is a newer targeted therapy, a monoclonal antibody.

I'm not trying to be argumentative but we need to be accurate here.

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

yes...technically avastin is 'chemotherapy'...but as someone else pointed out, it does not kill healthy cells as traditional chemotherapies do so well. And as until quite recently, it was not used except as a last resort...when all the other chemotherapies had ceased to 'work'.
One of the benefits that my onc at the Medical school said about me taking it first...was that he gets to write a paper about 'side effects' that are not exacerbated by a body already ravaged by traditional chemo.

your statement re avastin is true: it does not damage healthy cells....
when the folks at Mass General suggested avastin< i jumped at that option

Dear Madcoast,

Just sent you a response thanking your for this narrative but somehow (chemo brain?), I addressed it "Carolenk" instead of "Madcoast."

Hope you'll see it and respond, nonetheless.

Sorry,
Rosey

Dear Madcoast,

Just sent you a response thanking your for this narrative but somehow (chemo brain?), I addressed it "Carolenk" instead of "Madcoast."

Hope you'll see it and respond, nonetheless.

Sorry,
Rosey

What has been done for your mother-in-law to this point? You mention scans but not what she has gone through to treat it.

Cindy