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Just diagnosed - MMMT Uterine Cancer

kfparke's picture
kfparke
Posts: 7
Joined: Jan 2011

My name is Kathy, 59 years old and living in Kansas. Had biopsy Nov 2010, hysterectomy performed Dec 22nd and pathology report noted Stage 1A MMMT grade 3 cancer. I had consult with oncologist last week and will be having six rounds of chemo (Paclitaxel and Carboplatin) - once every 3 weeks starting in a couple of weeks. Grateful to have found forums and discussion boards like this one. I am trying now to make sure I am healthiest I can be starting chemo. Have read much information about nutrition and vitamins and am confused about supplements to avoid during chemo if there are those. Asked my oncologist and she said just take a good multivitamin and eat healthy. I have read to avoid vitamin C during chemo. Overwhelmed with information right now, emotions are high and want to make sure I have am my best health advocate for this journey.

Sending hope and prayers to all... Kathy

Kaleena's picture
Kaleena
Posts: 1130
Joined: Nov 2009

Kathy:

Sorry that you had to join this group and for your recent diagnosis. It seems that you already have a grasp on your treatment by being your own advocate! Keep that positive energy going! Look on some of the prior posts. You will find some great resources and information.

My best to you during your upcoming treatment.

Kathy

nempark
Posts: 592
Joined: Apr 2010

I was diagnosed in October 2009, surgery 2009, total hysterectomy.(59yrs) Mention to you doc about the momentum. Its a fat lining at the bottom of the belly, they also take that out because cells can be hiding in there (important).I was stage 1A Grade 3. Before surgery, I took iron and folic acid. Doc told me to buy stool softeners just in case I got constipated. Kathy, like all of us you will go there and be completely surprised how well you are going to endure this journey. You will probably lose your hair, but considering all things, that is secondary it grows back immediately after your last treatment. I find that the Docs does not know what to tell you about nutrition. I have been using a daily cocktail of 1 lemon, fresh ginger, 1 teaspoon of organic olive oil 1/2 teaspoon of turmeric and a dash of black pepper. I blend it together and I drink it everyday. I have been doing that since I was diagnosed. Also I blend (organic is best) strawberries, black, blue, cranberries and some beets with an organic fruit drink. I drank that every day. I hope this helps you. Do not be afraid of the chemo it is really doable. I do not believe I am sitting here typing this to you when I was in exactly the same position 12 months ago. I really do know how you feel. You will do this like a champ. I remembered during my time a friend told me her aunt had Chemo and she did it like a stalwart. Those words stuck to my mind and I did it like a stalwart also. So you kindly be my next stalwart. Love and hugs June. I will be waiting to hear from you.

Susanna23
Posts: 66
Joined: Dec 2010

Hi June, Kathy
June - you are a year ahead of me! I too do turmeric, ginger, lemon - I grind the turmeric with Viridian Beauty Oil which is a balance of omega 3, 6, 9 - based on flax but also with pumpkin seed and avocado oil (I was given it at a press do last year - never thought I'd be using it for this but I have stocked up!). And berries - lots of. Crushed clove of garlic every day. But I dont use turmeric three days before or after chemo (report on the anticancerbook site by David Servan-Shreiber said there was a remote chance of it interfering). Anyway, coming up to second chemo on 1st Feb. Kathy, for me it has certainly been do-able so please take heart. So far, so good, anyway - no real side effects to speak of. I had been very nervous coming up to day 7 as between day 7 and 14 the white cell count falls and you can develop a serious infection requiring hospital treatment - been monitoring my temperature twice a day since chemo started and so far normal. Anyway today I went to collect my wig - ended up buying a second one (full price - the first was subsidised by the NHS). The wig fitter seemed a bit surprised that I planned to wear it every day - clearly she did not realise how vain I am! She said it would only last a couple of months so I bought the back up (which is identical) and will alternate them. Now just got to buy a couple of sleep caps and some wig shampoo and conditioner. Tomorrow am having my hair cut very short and will start wearing it after that. Actually my hair hasn't started to come out yet, but it's almost guaranteed that it will. The wig consultant said it's best to have it cut short first and then the remainder comes out into the sleep cap.
Finally, June, you mentioned omentum - I believe mine was checked (but maybe not removed?) because I saw 'washings clear' on the path report.
You're right June - there is not much official guidance on nutrition. My consultant just said have a healthy diet! That could mean anything
Take care both and keep in touch
Sue x

nempark
Posts: 592
Joined: Apr 2010

Sorry Susanna: I think of you every day and want to write but sometimes I get a little melancholy.You sound well and I hope you keep positive. Life is not straight with us right now but, we with self care and a good attitude can fight this monster. I like your cocktails. Tonight I am going to have a different cocktail (vodka and tomatoe juice) my brother is coming over. I feel well enough. Soooo on that note, please keep in touch and be well. Oh! by the way, don't spend too much on hats and wigs, you will end up wearing just one(the cheapest one to booth) that was me. Love and hugs to all.June

Northwoodsgirl
Posts: 201
Joined: Oct 2009

Hi Kathy! First let me say that my heart goes out to you on your diagnosis. I am a one year survivor. I had my surgery June 2009 and last chemo in Dec. 2009. Same drugs as you. You will make it through. In many respects it is a battle of the mind and the body. Your emotions likely are a roller coaster. Please keep posting when you can because we care and understand like only other women who have been told that they too have uterine cancer.
Post any and all questions as there is so much helpful advice and so much support we can give you as a group. God bless you!
(((HUGS)))) Lori

cheerful
Posts: 122
Joined: Apr 2011

Hi Kathy:

I also just joined the UPSC board and I am under the name of "cheerful" on April 1, 2011. My name is Jane and I live in the suburbs of Delaware County, PA. I am also 59 years old. I had a total abdominal hysterectomy done on Tuesday, Feb. 1, 2011. I found out I had cancer on Feb. 3rd, they thought it was adenocarcinoma, but when I saw my oncologist on Feb. 23rd, they said it was papillary serous carcinoma also known as UPSC. He recommended that I go through 6 rounds of carboplatin and taxol and he said it was very aggressive treatment.

I am starting chemo tomorrow on April 14th and will go every 3 weeks. My cancer did not penetrate the muscle or the uterine wall and there was minimal invasion to my myometrium. They do not know what stage it is in, because my gyn performed the surgery, but based on what my oncologist said to me, I truly believe that my cancer was caught at an early stage since it did not go into the muscle or wall of the uterus. I had heavy bleeding for 6 months before I had my surgery. I am going to have my lymph nodes and omentum removed after 3 rounds of chemo so that will be in a couple more months by the oncologist. My oncologist has many years of experience about 35 years so he is highly and very experienced in his field. I have heard from some of my other doctors that I see that he is a very good doctor. My gyn had referred him to me as soon as I was diagnosed with cancer 2 days after my surgery and he stopped by to see me in the hospital. I have a long and very good relationship with my gyn and have been seeing him for 28 years.

I wish you all the best with your treatment. Hope your doing okay with your chemo treatments and managing. Please drop me an e-mail when you get the chance. I am under "cheerful" and joined this group on April 1st. I too have read many things on this discussion board. I take a multivitamin every day along with other vitamins. I also take 4 medications for various health issues.

My oncologist said I am in good health and I have my age on my side as I know this cancer can hit women in their late 60s and into their 70s and I am on the younger side of it. I want to survive, fight and beat this cancer, and I am determined to. I have a wonderful husband of almost 31 years and a son who is 16 and I want to be there for both of them down the road and in years to come.

Jane

Ro10's picture
Ro10
Posts: 1424
Joined: Jan 2009

Sorry to have to join us in this journey. You are at a wonderful site though to get your questions and concerns answered. We have all been on the journey, or are currently traveling the journey.

I hope you are right that they caught the UPSC at an early stage. They too thought I had adenocarcinoma before the surgery, but it turned out to be be stage 3-c UPSC, I had no symptoms before the surgery, but had an abnormal PAP.

Good luck with you treatments. I hope you have a port scheduled to be inserted. I highly recommend the port.

Good luck with your upcoming staging surgery, too. In peace and caring.

cheerful
Posts: 122
Joined: Apr 2011

Hi Ro:

I noticed and read that so many women belong to this UPSC board and I wanted to join since I was just recently diagnosed. My oncologist seems to think I have a very good chance of beating this cancer since I have my age and health on my side. I am 59. He is hoping that the cancer will not return once I have all of my treatments. I am also going to have two radiation treatments after the chemo treatments are over. He did recommend 6 chemo treatments of carboplatin and taxol and I already have had the first treatment on April 14th. I noticed that all of the women on this discussion board have had 6 treatments of carboplatin/taxol as it seems to be a very standard treatment.

After my first chemo treatment, I felt achy and also had constipation, had some slight ringing in my ears and shortness of breath as the chemo drugs can cause this. I bought a stool softener to help with the constipation and found out I can use Tylenol for the muscle aches. I did feel very tired for several days after my first chemo treatment so I just took it easy. I have my second treatment on Thursday, May 5th. I also see my oncologist before I have my 2nd chemo treatment. I also am now starting to lose a lot of my hair, but already bought a wig over a month ago. As soon as the oncologist mentioned to me I would lose my hair, I went out immediately and started shopping for a wig. I finally decided on a wig very close to my hair color and style that I currently have.

Thank you for your wishes for the chemo treatments.

How are you doing since your chemo treatments have ended? That's amazing that you did not have any symptoms prior to your diagnosis of UPSC. I had 6 months of heavy bleeding and I surmised from the very beginning that it would be cancer, and I even had mentioned this to my gyn. I had 2 tests to see if it was cancer, but they did not prove anything as I had a large fibroid blocking it. I wanted to have a hysterectomy because I was so drained and felt very tired from the constant bleeding. So happy and glad that I did - and I do feel that the cancer was caught early based on what my oncologist mentioned to me as the cancer did not break through the muscle or the wall of the uterus. I felt so much better once I had the hysterectomy.

I have checked a lot of the discussion boards on UPSC and have read a lot of information. It is so helpful and informative. I am extremely hopeful that I wll be able to fight, survive and beat this cancer.

I wish you all the best as well. Please keep in touch via e-mail and let me know how you are doing.

With warm regards.

cheerful
Posts: 122
Joined: Apr 2011

Hi Ro:

Just wanted to update you on my UPSC. I have had 3 chemo treatments of carboplatin and taxol. I have gotten a little sick for about a week after the chemo treatments and then I start to feel better. I also have had some mild constipation (I take Dulcolax once and I am okay right after the treatment and it really helps me) and I take Tylenol for the muscle aches which last for a couple of days. I am doing fine now and I am halfway through my chemo treatments. I also met with a radiologist and he is in the cancer center where I am getting my treatments so my oncologist, radiologist and chemo treatments are all in the same center which is very convenient.

The radiologist did say to me that my Cancer is Stage 1, Grade 3 and that I have an 80 to 90% survival rate. This is very encouraging to me and quite uplifting. I do also have a very postive outlook on cancer. I know I can survive, fight and beat this cancer as I am very determined to. I am meeting with my oncologist again next week to discuss additional surgery for my lymph nodes and omentium removed since my gyn had done my initial surgery which was a hysterectomy. I will see what my options are and if he highly recommends this additional surgery. Then if I have the surgery I will still need 3 more chemo treatments and radiation. My oncologist said I should be done with the treatments in the fall.

I also have met with a Stage 2 survivor of the same type of cancer (UPSC) and she is now 3 years cancer free. She is about a year younger than I am and lives close to me. She has given me some information on cancer which has been helpful and I have also called the American Cancer Society and the National Cancer Institute and they have sent me brochures as well.

Anyway, how are you doing with your cancer? Hope you are doing well.

Send me an e-mail when you have a chance and let me know how you are doing.

Warm Regards.

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

I just read your posting, and I am happy to hear your prognosis. However, I am curious about you getting radiation. I was diagnosed with uterine cancer, clear cell, stage 2, grade 3. Stage 2 because it invaded the myometrium wall 9mm of 14 mm.
I am only getting chemo, taxol/carbo, but not radiation. My doctor said I do not needed, because the tumor was taken out during surgery.

Can toy explain the reason gave you, please?

cheerful
Posts: 122
Joined: Apr 2011

Hi Fayard:

Thanks for responding. The reason I am getting radiation is my oncologist recommended it that I have it done. I will need 3 radiation treatments. I already met with the radiologist back in June. I understand that the radiology treatments will be a lot shorter time and you will not have to spend the whole day there like with the chemo treatments. I only have 1 more chemo treatment to go through and then I will be all done with the chemo treatments. I definitely will go out and celebrate once all of my chemo treatments are done and over with. After the chemo treatments are over with, I most probably will start the radiation treatments. I will need to have the radiation treatments done once a week for 3 weeks and then that will be it. A friend of mine whom I recently met through the hospital cancer support group (she also had UPSC) and ended her treatments 3 years ago also had a few radiation treatments as well. Her cancer was Stage 2.

That's great that your cancer was caught at Stage 2. It is still an early enough stage. I know you have a different type of cancer than I was diagnosed with - I was diagnosed with uterine papillary serous carcinoma or (UPSC) - it is a Stage 1, grade 3 cancer. I have heard of clear cell uterine cancer. I wish you all the best. Please do keep in touch via e-mail on this site. I want to hear how you are doing.

Warm Regards,
Cheerful

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Hi Cheerful,

I just finished chemo on July 22 and had an appointment yesterday.
Again, my onco told me I do not need radiation, and that I am fine.
He said that the chances of recurrence were less than 10%.

He also want to order a scan in a year.
I have a mild abdominal pain, so we are going to wait a week and if pain persist my doctor will order a scan.

I hope you are feeling well and positive.
You said you have one more treatment to go. When is it?
I know you are going to be just fine.
Please keep me posted.

PS: I do not know how to send emails from here. If you do, please let me know.

cheerful
Posts: 122
Joined: Apr 2011

Hi Fayard:

Thanks for your e-mail. As far as responding via an e-mail, just hit the reply button and you should be able to e-mail a response. I am happy to hear that you are all done with your treatments and you must be so happy and relieved! I hope you are going to go out and celebrate now that everything is over with. I do plan to go out and celebrate when I am done with all of my treatments.

My last chemo treatment was supposed to be next Friday, August 26th. However, last week, I received a phone call from my oncologist's office. Apparently, my platelets are very low so I needed to have a blood transfusion. I understand this sometimes does happen during chemo that your platelets become low so I had a blood transfusion (2 pints of blood) last Thursday, plus a Neulasta shot for white blood cells. I felt a lot stronger and better when I left the center after being there just about all day.

I received another phone call today (Tuesday, Aug. 16th). My platelets are still low and my oncologist's office is postponing my last chemo treatment for next Friday, Aug. 26th until my platelets come back up to near normal I believe. This can be a couple of weeks. They want me to have a blood test done weekly to see where my platelets are. I also scheduled a radiologist appt. for next Wed., the 24th to consult again with the radiologist as I need 3 treatments. My oncologist and radiologist are going to confer with one another. So now I am thinking I won't be done all of my treatments until probably in October. It is a setback, but I want to get better and feel better and go back to my "normal" life and enjoy life each and every day. I have my husband, son and mother that I want to live for plus a lot of friends that genuinely care about me as well and family as well. They are all pulling for me and wishing me well in my recovery and are keeping me in their prayers as well for which I am very grateful.

Please keep in touch via e-mail and let me know how you are doing and am really happy that you are all done with your chemo treatments and Congratulations! You must have left the treatment center elated and I know I will feel that way once I leave the center as well for my last chemo treatment.

Warm Regards,
Cheerful

cheerful
Posts: 122
Joined: Apr 2011

Hi Fayard:

Just wanted to update you to mention that my platelets are now up and my oncologist's office scheduled my Last and final chemo treatment for Wed., August 31st. I will then be DONE ALL of my 6 chemo treatments! Yeah! I do plan to go out and celebrate from this experience. It has been a long and grueling journey, but to me it has all been well worth it as it will save my life and hopefully prevent the cancer from returning.

Also, I have met with my radiologist and my first radiation treatment is scheduled for Thurs., Sept. 15th and I have 2 more after that and it will be once a week. Then, I will be done ALL of my treatments for good hopefully!

I know I will have to have scans done and probably other tests done down the road to check regarding the cancer. Hopefully, my cancer will never return and that I will remain cancer free! My CA 125 level was No. 8 which is really very good from the blood test I had done this past Monday, Aug. 22nd.

I hope you are resting now and enjoying life and enjoy each and every day that you have.

Keep in touch and I wish you all the best for the future and hopefully you will remain cancer free down the road as well.

Warm Regards,
Cheerful

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

Hola Cheeerful,

I am so happy everything turned out well about the plateles, so you can finish your chemo treatments next Wednesday! Just a little more to go, and radiation will be out of the way
also.

I had my port removed yesterday. I feel like everything is officially behind me. My doctor ended up ordering an MRI of my abdomen and pelvis upon my request. It came back clean, thank God.
We will continue praying and be vigilant, so this monster will never come back!

To celebrate, my husband and I drove to South Lake Tahoe, from home San Diego, on August 15 and returned on the 19th. We visited Benton Hot Springs, Mammoth and Yosemite Park. We had a great time.

You will be cancer free very soon, if you are not already.
Please keep me posted.

Big hugs! (((((HUGS)))))

PS: Now I now how to email you.

cheerful
Posts: 122
Joined: Apr 2011

Hi Fayard:

Thanks for getting back to me so quickly. I found out Wed. that my platelets were normal so I had my last and final chemo treatment.

I was so happy and relieved that I am now done with "ALL" of my chemo treatments. I have been resting the last 2 days and taking it easy. The 2 chemo nurses sang a song to me "Happy Last Chemo Treatment to You" with Tambourines, cymbals and bells that they gave out to a few people to shake and they also laid out a small red carpet that I walked on before I left the chemo center. I thought that was very cute and thoughtful of the chemo nurses.

The chemo nurses want me to come back and visit with them soon and I will do so probably in a few weeks. I am very grateful to the chemo nurses for all they did for me while undergoing treatment and also to my oncologist and his staff for "saving my life".

My son who is 17 came with me for my final three chemo treatments and was there with me for the entire time of my last three treatments. I so appreciate him being there for me. He is a wonderful son. He starts his senior year of high school this Tuesday and it should be a fun and exciting year for him.

Your right, we hope this Monster is finally gone from our bodies for good and it will never come back. It is so important to go for your follow up appts probably every 3 months once your treatments are completed or whenever your oncologist wants to see you again.

I start my radiation treatments on Sept. 15 and my next one is the 22nd and the last one is Sept. 29. The first radiation treatment will be the longest and then the other two not as long.

I am happy to hear that you got away for a short trip to celebrate your chemo treatments ending. In fact, I went to Yosemite back in 1976 (when I was in my mid 20s) and I was on a 2 week tour throughout California, Arizona and Las Vegas. The trip was phenomenal and I will never forget it. I flew to California and took a bus throughout California and travelled about 2,000 miles and then flew back leaving from Arizona. I do remember San Diego and it was really beautiful with the ocean and the ships sailing.

I actually live in the suburbs of Philadelphia, Pennsylvania so I am probably about 3,000 miles from you.

Anyway, Keep in touch via e-mail and I will do the same.

Big Hugs to you,
Cheerful

RoseyR
Posts: 464
Joined: Feb 2011

Dear Cheerful,

Am so glad you've finished your chemo and will soon strt radiation. I too recently finished ALL treatment (six rounds of chemo and five weeks of daily external pelvic radiation) and am feeling just fine--though I DID need a blood transfusion when hemoglobin fell low after 4th round of chemo. As I live in Phila wonder if we're being treated at same center--and why your oncs chose to do all the chemo upfront and THEN the radiation as so many of us were given "sandwich" treatment (three chemos, radiaiton, then three more chemos.) Were you staged at more than IA or IB, I wonder?

Whatever the case, congratulations. I am feeling just fine myself and know you'll pull through th rest of your treatment with flying colors.

Best,
Rosey

cheerful
Posts: 122
Joined: Apr 2011

Hi Rosey:

Thanks for your e-mail. I live in the suburbs of Delaware County, PA and am going to Crozer Chester Medical Center (their Cancer Center) for my treatments as my oncologist is affiliated with that hospital and my gynecologist highly recommended my oncologist as they know one another very well. My oncologist has 35 years of experience and he is extremely knowledgeable about our type of cancer.

I know you mentioned you live in Phila. I know Thomas Jefferson is one of the top hospitals there. Are you going to Jefferson's Cancer Center?

I had my 6 chemo treatments already. My oncologist wanted me to wait to see if was going to have additional surgery done for my omentium and lymph nodes, but I have decided Not to have this additional surgery because after my hysterectomy in February, my incision broke open, I had to go back into the hospital for a couple of days, and then I had a home health nurse come to my house to treat and take care of the incision that broke open for about 5 weeks and it healed very nicely. Plus I found out that you can get lymphadema and you would have this on a permanent basis and there is No cure for lymphadema so I thought why risk this additional surgery for the lymph nodes and omentium, plus being cut open again and having this incision possibly break open again. I have been through so much witht his cancer already I feel since January/February and all of this year so far. I am meeting with my oncologist this coming Wednesday, Sept. 21 to mention to him that I have decided not to have the additional surgery. His staff mentioned to me that some women have the surgery done and some don't and he mentioned that there are other things he can do if I don't have the surgery so I will discuss this with him.

I am still getting over my chemo treatments (the six of them) and will be starting radiation now at the end of this month and into mid October for a total of 3 radiation treatments. I found out today that my white blood cell count is a little low, but should be back to normal very soon, and my platelets are fine (thankfully).

I hope to beat this cancer and hope that it never returns. My oncologist said hopefully it won't come back on me. I am eating healhier and doing what I can. I have lost over 30 lbs just from the chemo treatments alone. I want to lose even more weight on my own now that the chemo is over with. My cancer was Stage 1 clinically and my radiologist said to me that I have an 80 to 90% chance of survival so the odds are in my favor. I want to live a long and happy life as I have a lot to live for. I have a wonderful husband, son and Mom who is 88 and my Mom survived breast cancer as her cancer was caught at a very early stage back in the early 1970s. I also have a lot of great friends.

Anyway, thanks for responding and keep in touch via e-mail.

Regards,
Cheerful

cheerful
Posts: 122
Joined: Apr 2011

Hi Ro:

I wanted to send you a follow-up e-mail. I know I have not heard from you since I was first diagnosed and right after I joined the website in early April. I found out that I have Stage 1 UPSC (grade 3). I finished "ALL" my treatments by the middle of October including 3 radiation treatments. I finished with Chemo the end of August. I now am wondering what are my chances of a reoccurrence so I called the American Cancer Society and spoke to an oncology nurse and she said 20% or a little higher. I know I am a real "worry wart". I am very hopeful that this cancer (which is aggressive) does not return on me. My oncologist said to me back in March that hopefully this cancer will NOT return on me. He said I have my age and good medical history on my side. I asked him if it does reoccur, what would be done and he said More chemo, but I did read on the Internet that a lot of women with a Stage 1 or Stage 2 their cancer Never returned on them so I am very hopeful that my cancer won't return and that it is gone for good. All I can do is to continue to pray and hope for a great outcome for the future. I know I will be very nervous and concerned over the next 2 years as that is when this cancer can reoccur and especially when I have checkups through my oncologist. My next appt is in the end of January for a follow-up exam.

I also scheduled an appt with a dietician for this coming Friday (the 18th of Nov.) to find out the foods I should and should not be eating. I have been eating healthier I feel over the last several months. I still do not have my taste buds back fully as the Amer. Cancer Society said it will take 3 to 6 months after your last chemo treatment for them to return so now it has been 2 1/2 months.

I am enjoying life and I am living my life as normally as possible. I am really glad that my treatments are all over and done with. Also, I did not have the surgery on my omentium or lymph nodes as from my last cat scan I had done a month ago showed there was NO metasis to any of my other organs. I also had a cat scan done the end of March and also in mid June and they showed NO metasis either. I was very happy and relieved to hear these results and felt it was very good news.

How are you doing and what is going on with you? How are you feeling? I wish you all the best. You can respond to me when you have a chance. Hope to hear from you soon.

Cheerful

Ro10's picture
Ro10
Posts: 1424
Joined: Jan 2009

It sounds like you did well with your treatments. Hope your taste buds return to normal soon. It does take a while for the food to taste good again. Try not to worry about recurrence. You need to enjoy each day. I too hope you never have a recurrence.

I did complete my second round of chemo treatments in June. I had to have seven treatments this time around. Unfortunately my CA 125 began to rise again after I stopped my chemo treatments. However my CAT scan is stable.

I have a follow-up appointment on November 29 with my gyn/ono. I will see what his recommendations will be. I also have lab scheduled for that day. The second round of chemo treaments were harder than the first round. I was much more fatigued and had a metallic taste for about 2 weeks after each treatment. I am doing much better now. My hair has grown back now. Yours will be back soon, too.

Continue to enjoy each day. And may you have a very long dance with NED. In peace and caring.

cheerful
Posts: 122
Joined: Apr 2011

Hi Ro:

I too, wish you all the best with your cancer. Thanks also for your wishes regarding the long dance with NED. I hope the very same for you. That's great that your CAT scan is stable. Hopefully, it will continue to remain that way. Please let me know what happens with your follow-up appt with your oncologist the end of this month.

I know what you mean about fatigue - I still feel very tired and fatigued and am taking it easy. I know it will take a few more months to feel more back to normal. My hair is coming back now. I had a mid length Bob cut so it will take many months for it to return to that length. I have been wearing a wig since early May. I only wear the wig when I absolutely have to. Around the house I normally do not wear my wig at all only when I go out. A friend of mine that I met though a cancer support group gave me a cap.I have not gone to any of the meetings, but I got her e-mail and phone number. She lives about 20 minutes from me and is about a year younger than I am. She had Stage 2 of UPSC. So far, she is 3 years without it coming back on her so I do feel very encouraged and hopeful. I have met her 2 times over the past few months. I live in Delaware County, PA. In what area do you live?

As far as going through chemo, I did have a couple of setbacks. My platelets were really low after the 5th treatment in mid August and I had to have a blood transfusion. I felt so much better as soon as I left the chemo center and I also had a shot of Neulasta. I also developed an infection and had a fever and had an intesttinal bug and had it for 6 days in July. But all in all, my oncologist's office said I did fairly well going through chemo. Also, my platelets were still low after I finished chemo and finally now they are back to normal. It took well over 2 months for them to get back to normal. I am seeing my dentist on Tuesday for a gentle cleaning and checkup as I have not been there for a year as I had started chemo in April and had a dentist appt and had to cancel it since I had just started with the chemo.

I have been reading the posts about Linda P. I am so sorry and saddened to hear of all she has gone through over the past 3 years and now she has liver failure. I am praying for her. I have not e-mailed her since I joined in April and since I am fairly new to the site a lot of women don't know of me. I have heard from a couple of women though and it is good to hear from others that are experiencing what a person goes through with having this cancer. Linda seems to be so knowledgeable and knows so much about UPSC. I know now how truly sick she is. I will keep Linda in my thoughts and prayers.

I had a really good friend I worked with back in the late 1970s that passed away from Ovarian Cancer back in 2000. She was only in her mid 40s when she passed away and much too young to die. I miss her and think of her from time to time. She left a husband and 2 small children at that time. Her cancer was a Stage 3. I know she went through chemo and surgery. She lived about 3 1/2 years with the cancer. I felt so bad for her husband and kids at that time. Her husband has since remarried. I know our cancers are compared to ovarian that is what my oncologist told me.

Anyway, I hope you will continue to do well and that we both can beat this bad cancer.

With Warm Regards and Caring,
Cheerful

madcoast
Posts: 9
Joined: Apr 2011

i am now 2+ years out from a post hysterectomy diagnosis of 'endometrial carcinomasarcoma stage IIIb. I am now 61 and live in Charleston SC.
My onc surgeon tried to 'frighten' me into his preferred treatment while i was still in the recovery room. I choose instead to visit an 'environmental doctor' while recovering...and then as soon as I could travel, I travelled to Boston for a 2d opinion at Dana Farber and a group consult at Mass General.As a result of those consultations, I returned to Charleston and did Avastin (an angiogenesis inhibitor) for 6 treatments. One year out, I was diagnosed with a local recurrance at top of vaginal cuff and did 6 IMRT and 6 Brachytherapy radiation treatments. One year after that (feb '11), i have been diagnosed with possible 'local' recurrence' at entrance to vaginal canal. I just finished 4 weeks in an intensive bio detox program in an effort to eliminate those agents which stimulate good cells to behave badly. I will do a local outpatient surgery next week to remove those atypical cells.

My pathway is all about wellness....because at the end of the day, the docs dont really know much at all about MMMTs....nor is there really good data about the efficacy of traditional chemotheraphy on 'poorly behaved' cells...

i encourage to pay heed to the nuitritional and other 'wellness' advice that you have received from folks on this post....because the oncology community doesnt even pay attention to those things. Like i had severe anemia after radiation and my gyn onc didnt even comment on it but my envirnomental doctor has helped me to rebuild my RBC and my WBC as well as my lymphocyte count.

Would love to know if anyone on this post also has 'endometrial carcinomasarcoma'

madcoast
Posts: 9
Joined: Apr 2011

i am now 2+ years out from a post hysterectomy diagnosis of 'endometrial carcinomasarcoma stage IIIb. I am now 61 and live in Charleston SC.
My onc surgeon tried to 'frighten' me into his preferred treatment while i was still in the recovery room. I choose instead to visit an 'environmental doctor' while recovering...and then as soon as I could travel, I travelled to Boston for a 2d opinion at Dana Farber and a group consult at Mass General.As a result of those consultations, I returned to Charleston and did Avastin (an angiogenesis inhibitor) for 6 treatments. One year out, I was diagnosed with a local recurrance at top of vaginal cuff and did 6 IMRT and 6 Brachytherapy radiation treatments. One year after that (feb '11), i have been diagnosed with possible 'local' recurrence' at entrance to vaginal canal. I just finished 4 weeks in an intensive bio detox program in an effort to eliminate those agents which stimulate good cells to behave badly. I will do a local outpatient surgery next week to remove those atypical cells.

My pathway is all about wellness....because at the end of the day, the docs dont really know much at all about MMMTs....nor is there really good data about the efficacy of traditional chemotheraphy on 'poorly behaved' cells...

i encourage to pay heed to the nuitritional and other 'wellness' advice that you have received from folks on this post....because the oncology community doesnt even pay attention to those things. Like i had severe anemia after radiation and my gyn onc didnt even comment on it but my envirnomental doctor has helped me to rebuild my RBC and my WBC as well as my lymphocyte count.

Would love to know if anyone on this post also has 'endometrial carcinomasarcoma'

madcoast
Posts: 9
Joined: Apr 2011

i am now 2+ years out from a post hysterectomy diagnosis of 'endometrial carcinomasarcoma stage IIIb. I am now 61 and live in Charleston SC.
My onc surgeon tried to 'frighten' me into his preferred treatment while i was still in the recovery room. I choose instead to visit an 'environmental doctor' while recovering...and then as soon as I could travel, I travelled to Boston for a 2d opinion at Dana Farber and a group consult at Mass General.As a result of those consultations, I returned to Charleston and did Avastin (an angiogenesis inhibitor) for 6 treatments. One year out, I was diagnosed with a local recurrance at top of vaginal cuff and did 6 IMRT and 6 Brachytherapy radiation treatments. One year after that (feb '11), i have been diagnosed with possible 'local' recurrence' at entrance to vaginal canal. I just finished 4 weeks in an intensive bio detox program in an effort to eliminate those agents which stimulate good cells to behave badly. I will do a local outpatient surgery next week to remove those atypical cells.

My pathway is all about wellness....because at the end of the day, the docs dont really know much at all about MMMTs....nor is there really good data about the efficacy of traditional chemotheraphy on 'poorly behaved' cells...

i encourage to pay heed to the nuitritional and other 'wellness' advice that you have received from folks on this post....because the oncology community doesnt even pay attention to those things. Like i had severe anemia after radiation and my gyn onc didnt even comment on it but my envirnomental doctor has helped me to rebuild my RBC and my WBC as well as my lymphocyte count.

Would love to know if anyone on this post also has 'endometrial carcinomasarcoma'

pabjork
Posts: 4
Joined: Apr 2011

I had Stage IIIC2 MMMT (endometrial carcinosarcoma) diagnosed June 2010, surgery July 2010, chemo (Taxol & Ifex) Aug thru Dec 2010. My Gyn Onco surgeon was quite matter of fact - this is a rare, aggressive cancer, and it needs to be treated aggressively. I am deeply sorry about your recurrences, and I hope all goes well with your next surgery.

Perhaps I approach things differently, but I gather all info I can, and decide what makes sense to me. I ask lots of questions of all the medical community I encounter (I'm pretty sure I have "Pain in the A**" stamped on my medical file, but thats how I learn.

I would welcome a private message to compare notes (here I go again with the questions) since you have a few years of experience more than I.

Susanna23
Posts: 66
Joined: Dec 2010

Hi - just wanted to respond to those last two posts and say hi to all you other ladies on this thread. I was diagnosed with stage Ia uterine carcinosarcoma (though my doctor always calls it endometrial others have said it should be described as uterine) in November 2010. Have had TAH-BSO plus lymph node dissection and will have final session of six rounds of carboplatin/taxol next week - started in January. I had a choice on whether to take the chemo or just opt for normal follow-up - I don't regret my decision but I have a couple of doubts in my mind about chemo (whether it will weaken my immune system long-term and invite more cancer in and whether it might select out resistant cancer cells - but weighing all this up I still decided to go for it)
I am based in London and I am very interested in the dietary/wellness approach but received little advice or information from the hospital on this aspect (although there is a complementary medicine centre on the chemo ward and I have done Reiki healing there). I have added many of the things June, above, suggested to my diet but have not taken any supplements during chemo (though I will after). Biggest change has been getting a juicer and having fresh juice every day (pineapple, ginger and cucumber today). My approach hasn't been very systematic but just concentrating on getting through the chemo first.
Best regards - look forward to hearing more from you all
Susan

Susanna23
Posts: 66
Joined: Dec 2010

I just wanted to add that the CT scan I had on April 12 showed NED according to my clinic appointment today. Although it pleased me, I do realize it's not a great achievement compared to what some of you have done! My doctor admitted that this scan ought to have been done four weeks after the last chemo rather than between sessions five and six. It's my baseline against which any symptoms will be assessed and investigated. I will not be having regular CT scans, just physical exams and blood tests, going forward.
So, I've got my final carbo/taxol tomorrow and a check-up at end of July. I have been very lucky with my chemo - minimal side effects just aching/restless legs for a few days. FYI I have stage IA endometrial carcinosarcoma (also known as MMMT though my doctor doesn't seem to like that term) and am being treated at UCLH (London) - I have had TAH-BSO surgery plus lymph node dissection - the latter means I do not need radiotherapy at the moment - it is being kept in reserve in case of a local recurrence.
I wish you all the best
Susan x

RoseyR
Posts: 464
Joined: Feb 2011

Dear Madcoast,

Was diagnosed in late August with MMMT (stage IB) and have three rounds of chemo and am halfway through pelvic radiation.
i admire your independence in managing your treatment and wish you the best with this scary disease. On the up side, I have felt very well so far throughout all my treatment. But would like to know how your "environmental doctor" helped you to restore your Hemoglobin and lymphocite counts as mine too have fallen from chemo treatments.

Best,
Rosey

Fayard's picture
Fayard
Posts: 343
Joined: May 2011

For what I have read in my surgery biopsy report the following terms mean the same:
Papillary Serous or
Clear Cell Carcinoma of the Endometrium or
Carcinosarcoma

This is what I was diagnosed back in November, state 3, grade 3 (IIB, II)
My doctor only recommended 6 cycles of chemo . he said I did not need radiation, because the stage was low (It went to 2 because it invaded the myometrium more than 50%, invasion of cervical stromal connective tissue.

I hear meny of you have had radiation, and I do not understand why. Apparently, if the tumor is taking out completely, along with the organs around and lymph nodes, you do not need radiation according to the NCCN protocol.

Can some of you elaborate and tell me what were your doctors rational to do radiation?

Thank you!

Hilajoan's picture
Hilajoan
Posts: 15
Joined: Nov 2011

My onc. is recommending Chemo followed by radiation, explaining that radiation should help protect the pelvic area from a recurrence. Doesn't apparently extend survival, though, as if the cancer comes back it can come back somewhere else. I'm wondering if even the Chemo is necessary, if there is minimal lymphovascular invasion - however, what do I know? Joan (in London, UK)

MarieA
Posts: 18
Joined: May 2011

I am brand new at this and like all of us, there are many questions we need answered. My prayers will be with everyone who is going through this time of uncertainty. I was diagnosed on April 24th though I had symptoms for eight months. I was wondering how long should you wait before surgery once the cancer is discovered. How does the grade relate to the stage? thanks Marie A

MarieA
Posts: 18
Joined: May 2011

I am brand new at this and like all of us, there are many questions we need answered. My prayers will be with everyone who is going through this time of uncertainty. I was diagnosed on April 24th though I had symptoms for eight months. I was wondering how long should you wait before surgery once the cancer is discovered. How does the grade relate to the stage? thanks Marie A

upsofloating's picture
upsofloating
Posts: 473
Joined: Dec 2009

I'm glad you found our site - but sorry you needed to join us. Welcome!

You are right, there is much to learn. Do you know the Grade? Stage is not determined until surgery has been done as it reflects the extent of cancer found - from limited findings in uterus to extensive spread thoughout body. Quite a range! An aggressive grade 3 can be found early, a low grade 1 can be found at a later stage. CT/PET scans can be done pre-op to give an indication of potential spread. The grade could be an indication to move to surgery fairly quickly as well as symptoms which led to diagnosis. Each case is unique. Are you being treated by a gynecologic oncologist? This is quite important as they treat gyn cancers on a daily basis and have extensive training in doing the staging surgery. Chemo and/or radiation treatments are also specific to these variations. Reviewing some of the posts on this site may provide insight into the issues.

Ask any questions or just come for support, to vent, to share - we're here for you.
Annie

california_artist
Posts: 850
Joined: Jan 2009

cancer are called. The following gives some general information and is from our sponsor.

california_artist
Posts: 850
Joined: Jan 2009

that didn't work.

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