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Are there any other MMMT survivors out there?

1975goatgirl
Posts: 1
Joined: Nov 2009

I am a 34 yr old woman who was diagnosed with stage 4B uterine MMMT. Mine had metastasized to my omentum, colon, appendix and most of my pelvic and abdominal lymph nodes. I am 3.5 years in remission. I would love to hear from other survivors. I know this is a very uncommon cancer in relation to most uterine cancers. I've never talked to anyone else with it.

My email is kisses4fluffies@yahoo.com

Thank you,

Carrie

CMadison
Posts: 2
Joined: Jul 2010

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

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marti968
Posts: 37
Joined: Apr 2013

Are you in AZ or our Mom?  If so would like to talk to your mom if she is able.

nempark
Posts: 683
Joined: Apr 2010

I sent you an e-mail. Hope you are well. I am anxiously awaiting your reply. June

praying4u
Posts: 1
Joined: Jul 2010

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!

nempark
Posts: 683
Joined: Apr 2010

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

Cynthia7
Posts: 3
Joined: Jun 2010

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.

nempark
Posts: 683
Joined: Apr 2010

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.

Cynthia7
Posts: 3
Joined: Jun 2010

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.

nempark
Posts: 683
Joined: Apr 2010

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

Cynthia7
Posts: 3
Joined: Jun 2010

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!

aochime
Posts: 1
Joined: Sep 2010

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

janaes
Posts: 503
Joined: May 2016

Hi Anthony, I was diagnosed with MMT stage 2 Grade 3 uterine cancer back in May 2016 after my hysterectomy.  There are other women on this board who have MMT as well.  Im not full of knowledge but know this is an agressive cancer, yet Ive read other story on this board of women who have beaten this cancer.  I hope others see your post too.  If they dont you can start a new thread and i would think that would help.  You can also type MMT in the title bar at the top and it will pull up alot of threads around this cancer.  I also liked to click on peoples names when i find they have MMT and it tell more about them.  There is a lot of info about this cancer.  I also found it helpful to read up on the different cancer websites like this one. (American Cancer Society).

Janae

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jinkies
Posts: 8
Joined: Sep 2016

Did you have chemo or any other treatments? I had a total hysterectomy but they did not remove lymph nodes in February 2016 and have completed 18 weeks of carbo/taxol. I cannot get my local oncolgist to prescribe anything but chemo and CTscans.

Editgrl's picture
Editgrl
Posts: 901
Joined: Jun 2015

Welcome to the board.   Sorry you had to find us, but I'm glad that you did. as there is a lot of information here.  

Did your surgeon not remove any lymph nodes at all?  Have you had a post-treatment scan?  

If you are not happy with your local oncologist, have you considered getting a second opinion?  If you don't already have them, it would be helpful to have all of the pathology and scan reports for your own records so that if you do seek a second opinion, you already have those things in hand.

How you are feeling now?

Also, you might consider starting a new thread.  This one has so many entries that it's tough to find and respond.

Again, welcome.  There are several women on this board with carcinosarcoma/mmmt, some long-term survivors.  No reason you can't be one of them!

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jinkies
Posts: 8
Joined: Sep 2016

I live in a rural area and had a right ovarian tumor that was torsed 4 times and I was in a lot of pain so they had to do emergency surgery with a regular gynecologist at our local hospital. They did not remove lymph nodes because they did not see or feel any inflammation and the omentum looked good to them, so they didn't feel it had spread. It wasn't til we got the pathology report that they could see two tumors in the omentum and it was also in the washings. My oncologist sent me to Iowa city to see if his 18 week carbo/taxol treatments would be appropriate for my cancer. they suggested IP therapy with cisplatin and taxol which I agreed to anyway long story short, they botched my port it wasn't even in the right place, infiltrated chemo in my chest and infected my port all on the first visit, and I had to go back a few days later and have port removed and port site treated at our local wound center for debridement and antibiotics for infection. I never went back to Iowa City and had my 18 weeks CARBO/TAXOL done locally through my chest port. I have not had a post treatment CT scan yet because I have had so many CT's this year I am afraid of the radiation I also have BRCA2 and I don't repair my DNA so I am afraid of damaging cells and increasing my risk for cancer,and I am not sure they will be able to see the cancer on a CT because it is clear cell unless there is a large mass in there. Also my other problem is my CA125 is always normal it has never been higher than 14 even when I had my tumor, my last one was 6. I have tried several hospitals for a second opinion after chemo completed but they all say they don't have anything for me, no clinical studies available so they won't take me as a patient the last one I tried was Mayo in Rochester, Minnesota. My oncolgist doesn't want to try anything that isn't scientifically proven so he just orders CT'S and CA125. The combination clear cell and MMMT and ovarian cancer I think they don't want to touch you and they are probably waiting for a tumor to come back so they can give me more chemo and I don't feel that is the answer especially since they know my cancer tends to be platinum resistant. I have been taking supplements unknown to my doctor because he doesn't believe in them, improving my diet and exercising, but I could be doing more if I knew what. I feel you are given this devastating news from doctors and no real guidance on how to deal with it, sorry this post is so long, and thanks for the interest in my case.

Kvdyson's picture
Kvdyson
Posts: 789
Joined: Jan 2016

Jinkies, I am so sorry that you've had to go through this experience but glad that you found us. We are a very experienced group of people who are willing to share our stories and advice. If you haven't already, you may also want to try checking out the Inspire Ovarian support group. It is also very active and the people there are wonderul.

My understanding is that CA125 is not a good marker for everyone so it's not too much of a surprise that yours did not move up even with active tumors. When did your chemo treatment end? Does your oncologist consider the treatment to have been successful enough to shrink the two tumors in the omentum? Or do you need to have a second surgery to remove them? Is your oncologist a gyn-onc with experience treating MMMT or Clear Cell?

Besides Mayo in Rochester, have you tried contacting any of the other large cancer centers like MD Anderson, Memorial Sloan Kettering or Dana Farber? I received a second opion from Moffitt after I was disagnosed with uterine MMMT in Sept 2015. They came back with a completely different diagnosis so I ended up getting a third from Mass General/Harvard which ultimately agreed with the first. I had surgery and front-line treatment and have been NED since June 2016.

There are so many new types of treatments but most won't even consider you until front-line has failed. Unfortunately, you may need to get another CT scan to prove that it did fail before they will consider you as a candidate. It is completely a personal decision, of course, but since you already know that you have cancer, it may be worth the risk of one more scan in order to help determine next steps?

Regardless of what you decide, please know that we are here for you and will support you in whatever way we can. Wishing you strength and peace, Kim

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jinkies
Posts: 8
Joined: Sep 2016

My treatment ended 8/4/2016, they took the omentum out when they did the hysterectomy in February and then that is when they found the tumors on it under the microscope. My doctor is a oncologist/hematologist and has not had a mullerian clear cell patient since it is so rare that is why he sent me to Iowa City for a second opinion and they were awful there. I was hoping my doctor would let me get a MRI instead of a CT but he is insisting on a CT even though my insurance was ok with it. He is assuming the chemo worked until we get verification it didn't. Each CT is the equivalent of 100 chest xrays and that scares me because of the BRCA 2 gene my body doesn't repair damaged cells and it sets you up potentially for more cancer. I have not tried calling MD Anderson yet because it will be out of network for my insurance and it is so far away, I live in Illinois. Do you think I will have to get a CT to go any further? I was thinking of trying the Block center in Skokie it will be all out of network but closer to my home. They don't make it easy for you to be a survivor that is for sure. What treatments have you had that worked and do you take supplements or a special routine. I would love to hear your story,

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Soup52
Posts: 660
Joined: Jan 2016

junkies, where in Illinois do you live? I live in the Peoria area and have a gynecologist oncologist at the cancer center there. He is Salvador LoCoco and is really great.

janaes
Posts: 503
Joined: May 2016

Jinkies,  as i read you post i was thinking about where i am at.  A little behind you.  I have one more chemo left to do which is next thursday.  I have some of the same fears you have.  I am having some back pain that got worse since my hysterectomy and hasnt gotten better so i went and saw my GP and she wants to do a MRI but im thinking of waiting until i talk to my oncoligist because since im close to the end of chemo i wanted to know if he was going to do some sort of scan after.  I didnt want to do too many scans because two of my doctors have said that the radiation that was given me 23 years ago for a different cancer was the cause of my current cancer.  Ive done some research and also know that having no pregnancies also is a risk factor for uterine cancer.  My two kids are adopted and didnt ever get pregnant so i feel that had something to do with me getting uterine cancer also.   I dont know what my doctor thinks yet (i am hoping to find out tuesday) but i do feel if he is okay with it, that some sort of scan would be benifitional for me just so i know. Anyways I hope you find the answers you need as you go forward with your journey. I hope you find a doctor you will like. 

Janae

Editgrl's picture
Editgrl
Posts: 901
Joined: Jun 2015

Janae, if you're scared of radiation, the MRI is actually a better choice because it does not use radiation to generate the images, unlike CT or PET scans.

janaes
Posts: 503
Joined: May 2016

Thank you so much for your reply Editgrl.  I remember telling my GP on monday that i wanted to use the least amount of radiation as possible because two of my doctors told me that is what caused my cancer.  I think it was at the very least because of one other reason as well since i have done some research.  Anyways maybe that is why she chose to do an MRI not a CT scan. I hope so. 

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jinkies
Posts: 8
Joined: Sep 2016

MRI'S are perfectly safe they use no radiation they use magnets and have no side effects so you can have that done with no worries it is th CT'S that expose you so much radiation so avoid them if at all costs if you can. One CT exposes you to the amount of radiation of 100  chest xrays. I would do the MRI and have it done of your pelvic region and you don't have to wait till the end of treatment your so close to the end it is not going to make a difference and that way you can avoid the after chemo CT  that oncologist tend to order. I have read those risk factors also but I got to tell you I don't think the pregnancy thing is that big of a risk factor I had my first daughter at 20 and my other 2kids at 28 and 30 and here I am with cancer. I do know that radiation is proven to damage cells and cause cancer and your doctor is probably right about that. My mother had uterine cancer and she had 6 kids so there you go. Thank you for reaching out and keep me updated. Sally

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jinkies
Posts: 8
Joined: Sep 2016

I live in the sterling/rock falls area so I am about an hour and half away from Peoria. What cancer center do you go to. I never thought I would find someone so close that has this rare cancer cell type.

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Soup52
Posts: 660
Joined: Jan 2016

It is the Illinois cancer care center right in Peoria, Il on route 91. If you have been to the shops at Grand Prairie, it is on the same road. My doctor is originally from Texas and is in high demand. He is the one my gynechologist recommended and referred me to. The center is independent and not associated with any particular hospital, so maybe it would fit in your insurance plan.

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Kvdyson
Posts: 789
Joined: Jan 2016

Hi Jinkies, I'm not sure about you having to get a CT to go further but if it is required, then your doctors should be willing to go over all the risks/rewards with you so that you can make an informed decision.

As for me, I was diagnosed with stage 1b, grade 3, uterine MMMT in September 2015. Surgery was TAH & BSO, 14 lymph nodes excised, 10.5 cm tumor removed. My treatment was 6 rounds of chemo (Ifex/Mesna/Taxol) with 28 external radiation treatments "sandwiched" between the 3rd and 4th rounds of chemo. 

I finished treatment at the end of May 2016 and have been NED since June 2016. Side effects of treatment were minimal and easily managed. My gyn-onc had sent a piece of the tumor out for testing with various chemo meds and the Ifex/Taxol combo was most effective in the petri dish so that is why he went that route with me. The test is called ChemoFx by a company called Helomics.

Besides calcium + vitamin D, I don't take any supplements or eat any special diet. I exercise daily and try to keep a healthy BMI but other than that, I've given up on thinking that I have any control whatsoever over how my cells divide. This is my second cancer diagnosis (the first was malignant melanoma). I have no family history of cancer (except for my mom who smoked and died from lung cancer). I have an appointment with a genetic counselor in November and am hoping that that sheds some light on my predicament.

nempark
Posts: 683
Joined: Apr 2010

Please let us know how you are doing. June

Angelasmom2
Posts: 146
Joined: Jul 2010

My daughter had cancer surgery July 8th on her 38th birthday. The lab report on the tissue after the surgery was undifferentiated/endometrioid. Is that anything like what you are talking about? The cancer was 3c.

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jazzy1
Posts: 1385
Joined: Mar 2010

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

AndyCN
Posts: 2
Joined: Aug 2010

my mom was diagnosed MMMT 1B Feb this year. Reoccurrance was discovered in June and now the tumor has grown very big. She did one round of Ifosfamide and Taxol 2 weeks ago but it's not working out. Wondering if anyone else is in similar situation and knows if any other drug might work?

Was searching online and looks like Avastin may help treat MMMT... Any info is appreciated..

nempark
Posts: 683
Joined: Apr 2010

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.

dtrmnd2live
Posts: 4
Joined: Sep 2010

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

nempark
Posts: 683
Joined: Apr 2010

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.

sandy_b
Posts: 1
Joined: Jun 2010

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.

caregiveria
Posts: 2
Joined: Sep 2010

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.

kkstef's picture
kkstef
Posts: 706
Joined: May 2008

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

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DrienneB
Posts: 182
Joined: Aug 2013

Hi Sandy,

How are you doing? I hope you're THRIVING!!

I'm new to this, but a few months ago (year 2013) was the age that you were when you were diagnosed. I was 51 (this past April)  and am now 52, and also staged at 3B. After my hysterectomy, it was known that my tumor had almost fully invaded the myemetrial tissue layer and I also had a pelvic washing that was positive for cancer cells. Clear CT scans and visible lymph node action. I'm just finishing my carbo/taxol regime and am also considering radiation. My doctors are 2 "for" and 2 "against" radiation. LOL! I'm wondering what you decided about that!

Thanks,

jane

kriscan
Posts: 5
Joined: Sep 2010

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

nempark
Posts: 683
Joined: Apr 2010

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

jazzy1's picture
jazzy1
Posts: 1385
Joined: Mar 2010

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

nempark
Posts: 683
Joined: Apr 2010

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

nempark
Posts: 683
Joined: Apr 2010

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

nempark
Posts: 683
Joined: Apr 2010

j

biz.is@juno.com
Posts: 1
Joined: Oct 2010

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?

nempark
Posts: 683
Joined: Apr 2010

Hope you are doing alright. June

kriscan
Posts: 5
Joined: Sep 2010

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

Susanna23
Posts: 66
Joined: Dec 2010

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

kriscan
Posts: 5
Joined: Sep 2010

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

RoseyR
Posts: 471
Joined: Feb 2011

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

kriscan
Posts: 5
Joined: Sep 2010

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

RoseyR
Posts: 471
Joined: Feb 2011

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

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