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Metastatic endometrial cancer

snyderpm
Posts: 37
Joined: Dec 2009

I am horrified by what I am faced with. My stats: I am 66, not overweight, I exercise a lot, and do a lot of physical activities, like riding my horse, and jogging. In Jan 2010 I had a daVinci Hysterectomy to remove my Uterus, Ovaries, Tubes, and Cervix, although my biospy only indicated endometrial cancer. My Gyno/Oncol believes in the agressive approach. After removing everything and doing biopsies of everything including lymph nodes, and pelvic wash, everything was negative, except my Uterus, and the cancer was only at the celluar level, not a tumor. I was Stage 1A, Grade 1, and that is the lowest. Six months later my CA-125 was 57 and in Oct it was 325. How can that be, I said? After a Cat Scan that showed a mass on my Omentum and around a lymph node in my pelvic area, I was informed that I needed a explotory Laparotmy. I Gyno/Oncol felt that the lymph node was probably just some scar tissue with fluid from the biospy, but the Omentum probably had canter. Well they did their thing, and I have metastatic adenocarcinoma in 7 areas in my adominal cavity, but only seeding, except for my Omentum that had a tumor, and they removed my Omentum. I will probably start chemo next week, and it will be the Carbo/Taxol combo every 3 weeks for 4 treatments. I am flabergasted, or whatever, because my Gyno/Oncol was so confident that my original cancer was meaningless, and now they give me 1-3 years. I cry everyday, and so does my husband. I have always said I want to know when I am going to die, but now I can't face it. Please comment.

lociee's picture
lociee
Posts: 103
Joined: Apr 2009

I had 6 rounds of carbo/taxol followed each time by neulasta. The first time was by far the worse. I think my body got used to things after that. The neulasta definitely caused a lot of aches and pains for a few days - especially at night - I took percocet for the pain. After those first few days I felt a blast of energy. I think next time will be easier for you, too. I think some of the pain is pure body and mind shock. Next time you'll be prepared. Start the painkillers right after the shot. Don't even give it time to get overwhelming.
Take care,
Mia

evertheoptimist
Posts: 140
Joined: Jan 2011

synerpm,

I was diagnosed with UPSC 4B - that makes me one with the most advanced staging for the most aggressive gyn cancer. I am 1/4 through my first line chemo.

I am very optimistic, not out of delusion but out of rational thinking. You don't need to be completely cured of this diease to live long and "normal" life. Even with recurrences (I am likely to have recurrences), cancer is far kinder to life than other chronic, degenerative diseases that simply will not let you have a normal life. What we need is to muddle through recurrences and what not, and allow the scientific community to work their magic for the next breakthrough. Already, there are amazing things on the horizon.

Another thing to remember: rather than a particular staging or the nature of the recurrences, what's really important is how well your disease respond to chemo. If you are a "responder", you have a good prognosis.

I have seen research finding that showed that pre-cancer fitness and healthy life style is a good predictor for a good prognosis. The fact that you were fit and healthy already puts you on a different curve. You will do well.

I too had an "exemplary life style habit" - healthy eating, intense regular cardio, 115 Lb for 5'6". No drugs. No alcohol. 25 years of stable, happy marriage. And I am only 51, much younger than the average age at DX.

Well, so I got this disease out of nowhere. It's easy to dwell on "why me". But then again, "why not me?". If I were to play the game of "odds", I should be much poorer, much less intelligent, and have much less wonderful man for a husband. So, I got all the good fortune. It's entirely fair I get a rare condition that is on the opposite side of the curve. In aggregate, I am still better off, even in this condition, than most other people. So, I just need to concentrate on how to emerge as an extreme outlier on the right side of the statistical curve. I think I have a wonderful track record of beating the odds in various ways in my life, and I don't intend to stop now.

I do believe I will be a long term survivor.

snyderpm
Posts: 37
Joined: Dec 2009

Thought I would update FYI. I have one more chemo next Tues March 22. If you recall, I get Taxol/Carboplatin every 3 weeks, and then immune booster, Neulasta, the next day. I had bad bone pain with the first Neulasta shot @ 6 mg, so they dropped it to 4 mg and suggested trying 2 Aleve, morning and eve, instead of narcotic. This worked great for me, so I didn't have to take the Loratabs.

With my last chemo, March 1, I thought I was going to sail through easily, but had a very troublesome side effect. Had the chemo on Tues and Thurs eve my blood pressure dropped dramatically. It has been low since the second chemo, and it takes about 2 weeks for it to get back to normal. I started feeling strange, and I felt like my blood was boiling in my veins. I also started seeing a lot of black spots. My husband took my blood pressure 3 times in about 10 minutes, and it was like 50'/40's, 40's/40's, 50's/30's. My pulse was in the 80's, where before any chemo it was in the 50's resting. He was going to call 911, but I started feeling a little better and didn't have any chest pains, so instead I just got in bed and propped my legs up. I had been drinking plenty of water, and I don't think I was dehydrated.

I called the on-call doctor and he didn't seem too worried, but I sure was. He said this does happen with chemo, but my blood pressure was really low. About 11:00 that eve I got up and took my blood pressure again and it was 100/71, with pulse in upper 60's, so that was a relief. I stay in contact with the doctor office about it and take my pressure several times a day, so they can decide what to do before the next chemo. By the way,I do take blood pressure medicine.

Have any of you had this problem? I will thank you in advance for your responses, and without this discussion board, I think fear would have killed me. Pat

P.S. I should give some good info. My CA-125 was as high as 325 and after 2nd chemo it dropped to 40, so that is really good news. It dropped 70 points between the 1st and 2nd chemo. So hopefully it will drop to single digit since the 3rd chemo, March 1st.

Ro10's picture
Ro10
Posts: 1471
Joined: Jan 2009

Did they suggest you stop taking your blood pressure medicine, until the blood pressure stays up. Even though you are drinking plenty of fluids, you could be dehydrated. If it were me I would go to the ER and hopefully they would give you IV fluids to get your blood pressure up. That's what we did in the hospital when blood pressures dropped that low, especially if a person had symptoms - not feeling well, black spots, feeling of boiling blood. If you called EMS they certainly would have started on IV on you.

In the hospital we also held blood pressure medicines if blood pressures were less than 100. Maybe you should check with your primary doctor about the blood pressure medicine. My onocologist always told me to check with my primary doctor regarding blood pressure medicine.

I did not have low blood pressure, but high blood pressure and rapid heart rate from the chemos. I had to go on blood pressure medicines.

That is great news about your CA 125, but it is concerning about your BP. Good luck with your next treatment. In peace and caring.

Double Whammy's picture
Double Whammy
Posts: 2332
Joined: Jun 2010

First, I'm happy to hear that you've been able to manage some of the side effects from the Neulasta.

I have hypertension and take BP meds. After my last chemo (for breast cancer - but side effects are side effects) I was running a low grade fever and I saw my primary care physician. I wasn't aware that my BP was really low and that I was tachycardic, anemic, with an elevated white blood cell count ("mystery" infection). Scared the you know what outa me. I wasn't bad enough to be hospitalized or need a transfusion, but I did take my BP daily and made adjustments to my medicines accordingly, as Ro describes. I was followed very closely. It took a couple of weeks for both my blood pressure and heart rate to return to normal, but it did.

Be sure and report your side effects and if possible, record your blood pressure readings so you can tell your physician what's going on. I saw my primary care physician because she takes such good care of me and my oncologist is farther away and I really didn't want to have to go there. They also communicate.

So, while I had no complications and things resolved pretty much on their own, these symptoms were taken very seriously and I think yours should be, too.

Suzanne

RoseyR
Posts: 464
Joined: Feb 2011

Dear Snyderpm,

Have been following your recent diagnosis (much sympathy!) and thought I'd offer a few suggetions about the carbo/taxol regimen.

I too had been dreading starting chemo nine weeks ago, but my first three rounds have been surprisingly easy. Have had virtually no side effects except more than usual fatigue for a few days.

Can't help wondering if my lack of nausea, good appetite, lack of mouth sores, lack of any "flulike body pains" and even lack of any numbness and tingling in feet or hands (peripheral neuropathy) can be credited to an integrative doctor I've been seeing along with my regular oncologist.

He prescribed four supplements, assuring me that none (unlike some antioxidants) would interfere with the efficacy of chemo.

They are as follows:

AHCC (a supplement that virtually all hospital patients in Japan are given to migitate effects of chemo): it's a mushroom extract. ( Maitake D-fraction is a similar product with similar effects but AHCC has more clinical research supporting its use. )It is not cheap (especially the brand prescribed for me called "Protocols for Life." It is supposed to boost white "killer cells", stimulate appetite and promote greater sense of wellbeing during chemo. Dosage approved by research and found to be most effective is six 500-mg capsules a day. Two capsules, three times a day BETWEEN meals; wait two hours after eating and an hour before eating to take a dose.).

Glutamine ( a white powdery amino acid that dissolves in water an has no taste). One teaspoon in a glass of water three times a day, he told me, is supposed to minimize symptoms of peripheral neuropathy as well as protect your gastrointestinal lining from the effects of chemo. Swishing in your mouth before you swallow the last few gulps also protects your mouth from sores and ulcers. Very inexpensive and no harmful side effects. Was advised to start glutamine one day before each round of chemo and continue for the first three days of chemo.

ProGreens, a powdered green supplment. Dose: one scoop in water each morning about half an hour before breakfast. Contains probiotics and supergreen foods such as chlorella and spirulina that protect your gastroinestinal tract and also help to prevent constipaiton. Not expensive.

"Finest Pure Fish Oil" by Pharmax. Three teaspoons a day after meals. Guards against weight loss and promotes good appetite.

All are available online, by the way, and none is expensive except AHCC--although there are less expensive brands than the one prescribed for me.

Finally: you might want to check out your levels of vitamin D3 (should be 35-45) and of vitamin B-12 (should be at least 500 before starting chemo) to optimize your abilty to tolerate treatments. (Low levels of D, by the way, are associated with vulnerability to cancer not to mention other maladies such as osteoporosis.) Higher levels of D3 and B12 also help to prevent severe neuropathy, an occasional side effect of taxol and platinum-based chemotherapies such as carboplatin.

Hope this helps a bit.

Warmly,
Rosey R.

snyderpm
Posts: 37
Joined: Dec 2009

I am up and mostly over my last chemo, March 22, and hopefully I never have face chemo again. To refresh your memory, I have been having trouble with my blood pressure being low and pulse high. The chemo doctor told me to take 1/2 pill for a week, even if it gets somewhat high. I did for a couple few days, but it was still too low, like 90's over 60's, with pulse in high 70's, so I just stopped taking it. My blood pressure went to normal and has stayed that way so far. My Pulse is still kind of high, 70's, but I feel ok.

This time was not as bad as the first three treatments, and probably becasue they dropped the Taxol dose 30%. I also had no bone pain from the Neulasta this time, and didn't have to take anything.

I am sure that my treatments have not been as bad as what some people go through, but I hope if it comes back again I can just say no the chemo and take the cards dealt me.

My CA 125 after my 3rd treatment was 17, so that gave me a rush. It should surely drop to a single digit since my last treatment.

Next, after I get over the chemo, I have to start on Megace. Megace has a steroid in it an it makes you eat. I keep my weight down, by diet and exercise, but I only have so much willpower. I sure hope it doesn't make me extremely hungry.

I wanted to ask anyone who has taken Megace what their side effects have been? Thanks in advance. Pat

lindaprocopio's picture
lindaprocopio
Posts: 2022
Joined: Oct 2008

Megace only causes you to gain weight because it increases appetitite, so it really does all come down to willpower. Willpower has never been my strong suit, but knowledge is power. So if you know, going in, that the hunger you feel is all in your head, maybe you will be able to control any binge eating. I'd get a supply of rice cakes, and make hard-boiled eggs, and carrot sticks, and have dill pickles, etc,...any low calorie 'munchies' to help you stay in control.

Congrats on finishing chemo! If you have to do chemo again some time in the future, please keep an open mind. They balance quality-of-life with effectiveness once you recur a 2nd time, and can usually make chemo no more than an inconvenience. I've been on chemo almost continuously for the last year and enjoy a wonderful quality of life.

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

So glad that you've got through the final chemo. It's such a relief isn't it? A CA 125 of 17 is fine (I was told anything under 35 is within normal reference range), so if it goes any lower, that's a bonus, but i wouldn't worry about it.
It's interesting that you've been prescribed Megace, even though it appears that you're now in remission. In the UK, it is not prescribed unless there is active disease. I asked my onco. about it and she said that there was "no evidence" to support adjuvant treatment with hormones. But I guess what she probably means is that there isn't enough evidence yet!
I haven't taken Megace, but my Mum did and didn't have any side effects from it. I don't recall her having any weight issues, so it probably doesn't affect everyone.
Good luck
Helen

snyderpm
Posts: 37
Joined: Dec 2009

Thanks for that news, Helen. I have been sweating it, because what I have read is not good, like the number one concern of blood clots, and then Cushing's disease. My Gyn/Onc told me I have to take it as long as I live. I don't know when I have to start or how much I have to take, but it seems the usual dose is 80mg, twice a day. You know, it is a steroid, and steroids can cause a lot of problems. How long has your mother been taking Megace, and do you know her dose? Thanks in advance. Pat

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

Hi Pat
Sadly I can't provide any more information, as we lost Mum a few years ago. But she was on Megace for about 12 months without problems although I don't know the dose.
Kindest regards
Helen

snyderpm
Posts: 37
Joined: Dec 2009

I had my last chemo (Taxol/Carboplatin) a month ago this past Tuesday, and saw the doctor Monday. My CA 125 was 7 and I started Megace at 5ml or 200mg on Tuesday. I feel the best I have in a long time, and I hope the Megace doesn't ruin that. The same time last year my CA 125 was 7 after my first operation and then in October it was 325, so I am trying not to get to carried away with myself. Taxol/Carbo is some nasty stuff, but at least we can say that the Taxol/Carbo did its job. My strength is a little better now and I am trying to get back to my weight lifting, walking/jogging and riding my horse.

I will let you know if I have any bad side effects from the Megace.

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

Iam so happy to hear that you have had your last Taxol/Carbo and your CA125 is only 7. That is wonderful news! I can appreciate your reticence aoubt going over board on the celebration, but just enjoy each day. What more can we do?

I am glad that you are getting your strength back and know you will be back to your usual activities before you know it. You are determined person and I know you will give it your all.

Please keep us updated on your progress.

Wishing you many more years of dancing NED!

Best wishes always! Karen

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

Pat!

My sweet Australian mother-in-law often congratulated a well-done effort by saying, "Good on ya" (Good for you). I've been following your struggle through chemo and am delighted to read that your hard work has paid off so well! What a nice CA-125 reading!

I was fortunate not to need Neulasta, so did not have to go through the pain mentioned by some posters on this site. Of course I know not everyone who has Neulasta experiences the pain.

Today I saw my gyn/onc for my every 4-month check-up and PAP. My annual CT results were available and showed that I remain NED. Whew! I feel fine and hope that you, too, will have a similar report a year from now - and two years from now - and three years from now . . .

Please keep posting about you experience with Megace - good or bad.

Again, well-done!

Sally

snyderpm
Posts: 37
Joined: Dec 2009

I thought I would update on my recovery from chemo and how the Megace is treating me. I finally got over the chemo to where my hair, eyebrows and eyelashes are growing back. It was 2 months Tuesday 17 since by last chemo of Carbo/Taxol. I have been feeling pretty good and can even jog 1/2 mile now.

I have been taking the Megace for a month, and it kind of has an astringent effect on your mouth, and some things don't taste just right, but not real bad. I am taking the liquid, and I might switch to the pills. Another side effect, is I am constipated, and have to take Colace everyday. I am taking 5ml or 200mg of Megace each day, which amounts to a teaspoon. I do think about food more than I did in the past, but I can control it right now.

The really good news is that my CA-125 is now 3.9. Even I feel good about that. I am sorry to say, I am still not optimistic. When I read what Linda, Songflower,Ro10 and others are going through, I feel lucky. I hope I stay lucky.

snyderpm
Posts: 37
Joined: Dec 2009

I thought I would update on my recovery from chemo and how the Megace is treating me. I finally got over the chemo to where my hair, eyebrows and eyelashes are growing back. It was 2 months Tuesday 17 since by last chemo of Carbo/Taxol. I have been feeling pretty good and can even jog 1/2 mile now.

I have been taking the Megace for a month, and it kind of has an astringent effect on your mouth, and some things don't taste just right, but not real bad. I am taking the liquid, and I might switch to the pills. Another side effect, is I am constipated, and have to take Colace everyday. I am taking 5ml or 200mg of Megace each day, which amounts to a teaspoon. I do think about food more than I did in the past, but I can control it right now.

The really good news is that my CA-125 is now 3.9. Even I feel good about that. I am sorry to say, I am still not optimistic. When I read what Linda, Songflower,Ro10 and others are going through, I feel lucky. I hope I stay lucky.

Double Whammy's picture
Double Whammy
Posts: 2332
Joined: Jun 2010

If you start at the beginning of this thread describing your unexpected recurrence and just skip to this last one, it is a very optimistic response you've had. I think I understand your cautious side of it. Afterall, the sneeky little monster showed up again after hiding somewhere and avoiding bullets for years. May you continue to recover from the nasty chemo and regain all of your strength (and hair). Congratulations.

Suzanne

HellieC's picture
HellieC
Posts: 456
Joined: Nov 2010

Great news about the CA 125 levels. Please try to stay optimistic. We all wait for the other shoe to drop, but it doesn't for everyone! You feel well - try to enjoy every day. Easy to say, I know, but we have to try!
Kindest thoughts
Helen

snyderpm
Posts: 37
Joined: Dec 2009

Well, it has been about 3 months since my last Carbo/Taxol treatment. If you recall my 2 month CA-125 was 3.9, and last week it was 4.1. So at least I am flying high at 3 months. My blood work is still not perfect, with the WBC being normal, but the RBC still a little low. I also have a somewhat high BUN reading. But, when you think about the poison they give us, it is a wonder we are still alive. I feel good, and do about what I want. I try not to think about the future, because it will be what it is.

snyderpm
Posts: 37
Joined: Dec 2009

Well it has been 4 months since my final Chemo and I had my first Cat Scan a few weeks ago and it was all clear. That was a relief. I also had blood work done a few days ago, and my blood profile is completely normal now, and my CA 125 remains at about 4, and I might add I feel real good. I can honestly say I don't feel like I just went through 1 1/2 years of hell. I would like to tell you about the Cat Scan. I had a reaction to the dye and I swelled up and looked like a big red tomato. I took a lot of Benadryl for a couple of days and then just a couple a day, but it took a full week for the swelling and red to go completely away. I didn't feel bad or have any shortness of breath. They are no going to give me the dye anymore. Right now, it is hard for me to believe I ever had cancer or that it is going to come back again.

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

You mentioned hysterectomy only. Did you have chemo the first time?

Double Whammy's picture
Double Whammy
Posts: 2332
Joined: Jun 2010

This is looking good, Snyderpm. I like reading the optomism in your post - such a different perspective than 6 months ago. This is just wonderful.

Best,
Suzanne

snyderpm
Posts: 37
Joined: Dec 2009

I know it is not that long since my last chemo, 6 1/2 months, but CA 125 continues to be real low at 4.4 taken end of Sept and Cat Scan completley negative. My Gyn/Onc seemed to be surprised how well I am doing. My hair has also grown back enough, so I don't have to wear wigs or hats anymore.

If you recall, my original cancer, endometrial adenocarsenoma, at a low grade and stage came back in less than 6 month after a complete hysterectomy. The cancer came back in my abdomen and omentum. I continue to take Megace everyday. I hope this helps some of you.

Good luck with your treatments. Pat

snbdye2000
Posts: 6
Joined: Sep 2011

Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!

snbdye2000
Posts: 6
Joined: Sep 2011

Thank you for the update Pat. It was interesting for me to read all the original postings. I had the exact same original treatment and diagnosis as you. Only to find myself 6 months later with three tumors in my pelvis area. I meet with my oncologist this tuesday and hopefully she will have a treatment plan for me. Your story is encouraging for me though. I have been on Megace for two months though, originally put on it to gain weight, but maybe it's helping the tumors too!

Double Whammy's picture
Double Whammy
Posts: 2332
Joined: Jun 2010

Just keep surprising them, Pat.

Suzanne

snyderpm
Posts: 37
Joined: Dec 2009

Hopefully, the Megace will shrink the tumors. They just operated on me again and scraped all the cancer cells out of my abdomen and removed my omentum. I had cancer cells in many places, so my prognosis was not good. But, now after the chemo and several months of Megace, it seems like things are looking up. Please let me know what your treatment plan is, and I wish you luck. Pat

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

ratajczaktrudy's picture
ratajczaktrudy
Posts: 7
Joined: May 2013

Hi I am new to this website, never thought I would get cancer. I had a Robotic hysterectomy 2 weeks ago. The doctors removed all my female body parts including cervix.they told my husband everything looked good. They tdid him no chemo and 90 percent chance that I didn't need chemo. Ian only 52 with teenage kids.ijust went to my First post op visit. The doctor said my cytology report showed there were cancer cells in my pelvic ,abdominal wall. He is putting me on Megace for a year, then he will do a laparoscopy to check for further cancer. I am a little scaried to wait a year to see if this med worked. I wonder if any one else who was told grade 1 cancer, but then told the pelvic washings had cancer cells. From what I read megace slows the growth of cancer. Sometimes I wonder if I had a total abdominal hysterectomy if they would of got the cancer, because its contain in the uterus. I found out after the surgery. In Robotic they chop up the uterus into pieces two microscopic cells are able to escape. I requested the reports path and cytology to see what it saids. My sister in aPA and brother prescribes radiation treatments. I thought about talking with the doctor to see if hormone therapy was the best way to go. They say uterine cancer is slow growing. Also I learned in nursing school that if you have radiation treatment  several years later you an get a different kind of cancer. Right now I am still pretty swollen sore and very tire. How long does it take to get rid of this fatigue. The doctor plans on sending me back to work 6 weeks after surgery. I thought that was to soon since I work12.5 hour shifts and push a med cart with computer and do heavy lifting. A friend of mine who had a vag hysterectomy and a desk job took 8 weeks off. The resident doctor told me my work insurance dictates when to go back to work. I don't want to worry about hat right now ,but hopefully I hope the tiredness stops , the abdominal swelling goes down and I feel better. I hope to find if the megace does the trick but so far the websites I read give options but not whether it worked. Hate to have my treatment in doctors hands who won't no for sure whether a med works or not. Thanks

NorahS
Posts: 93
Joined: Dec 2012

I don't have time for a long reply right now, but my reaction to your explanation of your medical care (so far) is for you to get a 2nd opinion. Preferably with a gyn/oncologist.

Please post again.  

 

Sisters three's picture
Sisters three
Posts: 157
Joined: Nov 2012

I was diagnosed Adenocarcinoma stage 1-A grade 2 with positive pelvic washings, my Gyn-Oncologist didn't want me to have either radiation or chemo based on tumor size and no lymph node involvement.

Basically I was told there was less than a 5% reacurrAnce and if I did either treatment it could possibly  up that percentage. I was somewhat worried yet thankful I didn't have to do further treatment. There are some lung nodules that are being watched closely, but those can't be considered a reacurrAnce since I apparently have had those since diagnoses. 

You are so newly out of surgery that your energies need to go to rest and recouperation. I would try to enjoy the down time the best you can. There are several ladies on this site who had the same situation as you and have been NED for several years.

My Onocologist was chosen after a second opinion. I was encouraged by the ladies on this site to find a doctor I was comfortable with and did it. My doctor now is ever watchful and totally upbeat and optimistic. 

Keep in touch and rest, hopefully you have a good book to read or the remote control is close at hand!!

FourBee's picture
FourBee
Posts: 15
Joined: May 2013

Hi, Megace is not a panacea and I strongly encourage you to seek a second and or third opinion with gynecological oncologists. So sorry to hear you are feeling poorly. You are right to question everything you are being told right now and the most important thing is to not rush. Should you opt for chemo it is most effective within 12 weeks of surgery so you have time and should focus on healing. Eat right (check what an anti-cancer diet is) and get some exercise and plenty of rest. Let us know how you are doing. Best wishes.

soromer
Posts: 130
Joined: Mar 2011

It has for me, at least for the past 18 months. 

I started at Stage IIIC2, grade 2, endometrial adenocarcinoma in February 2011. The first-line chemo I had (doxorubicin and cisplatin) didn't work; I had lung mets by that September.

I, too, thought Megace was just palliative, but then I decided to give it a try. Second-line chemos didn't have any better stats, and I was exhausted at that point. Fortunately for me, each subsequent CT scan I had showed dramatic improvement until I reached NED last June. I've stayed there and have no plans to regress!

Now, I've also done a lot of complementary stuff, primarily Ayurveda and acupuncture, but also other dietary and lifestyle changes, so I can't say the Megace is the only factor in my improvement. But I think it has helped, especially since my cancer cells are strongly estrogen positive.

The worst aspect of all of this cancer treatment to me is how hit-and-miss it still is. It's virtually impossible to tell in advance what will work, and what won't.

Best of luck to you, whatever treatments you pursue.

 

 

snyderpm
Posts: 37
Joined: Dec 2009

Hi soromer, I am glad you are doing good.  It seems like the Megace is working good on me also.  I am more than 2 yrs post chemo and have been taking Megace since then and my CA 125 has been between 3.3 and 4.8 and all the scans are very negative.   I know are dreaded disease can still visit us again, but I wanted to tell you a story that I got from my chemo doctor, and it was his idea for me to take the Megace.  Anyway, when he was doing research, a woman at the hospital had some terrible tumors, many, in her breast.  I don't know if she had already had chemo, but they tried the Megace on her and the tumors went away and after about 15 years, she asked to stop taking the Megace because of the weight gain.  They said ok, and then the tumors came right back, so she went back on the Megace and the tumors went away. 

He told me that it works at about 60%-70% on lower grade, less aggressive cancers, like ours, and the higher grade cancers have a much reduced percentage for success.  Well, hopefully we got lucky with the Megace.   I wish you a lot of luck.  Pat

 

soromer
Posts: 130
Joined: Mar 2011

Love it that it's working for you so well. I really appreciate hearing these success stories. What you say in terms of results is better than what I have heard, so this is very welcome feedback.

My oncologist is talking about lowering my dose this fall--from 160 mg/day to 80--and I have to say I'm apprehensive about that. I guess we'll see when we get there.

I have gained some weight since going on it, no question. Maybe 10 pounds or so. But that seems like a very small price to pay for NED.

Best of luck to you, too!

soromer/Kate

Skej
Posts: 3
Joined: Oct 2013

Dear Soromer,

 

Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

 

Just fyi we are using graviola tea leaves and carrot juice as support.

 

Skej

 

Skej
Posts: 3
Joined: Oct 2013

Dear Soromer,

 

Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

 

Just fyi we are using graviola tea leaves and carrot juice as support.

 

Skej

 

Skej
Posts: 3
Joined: Oct 2013

Dear Soromer,

 

Can you tell me what kind of ayurveda are you doing and which doctor is helping you and what medicines are you using. I am in india and would like to benefit from this if possible.

 

Just fyi we are using graviola tea leaves and carrot juice as support.

 

Skej

 

lbriggi
Posts: 2
Joined: Jun 2013

I am sorry to hear your news,  I too had endometrial cancer initially found in Oct 2010.  I had Davinci Total hysdirectomy and removed everything, tubes etc. I was grade 1A stage 2 all contained in my uterus at time of surgery in Jan 2011.  In Oct 2012 I was diagnosed with Wide spread Metatastic endometrial cancer - the cancer is in my abdominal and thoracic lymph nodes.  I have under gone 6 rounds of Chem carbo Taxo- my ca125 had dropped from 418 to 18 and holding steady for 2 months so far.  I am now considering radiation therapy.  I just turned 50 years old and am not willing to accept a single digit life expectancy.  I have visited many doctors looking for this agressive approach.  Push for as much treatment as your body can take.  Pray and be positive!  Wishing you the best!

 

FourBee's picture
FourBee
Posts: 15
Joined: May 2013

Dear lbriggi, It was good to read that you are having a positive response to the chemo that you had. I see that you are new here and want to encourage you to post about your experience and to ask others what has worked for them. Your histology of a grade 2 cancer means it was more aggressive than some endometrial cancers like mine which is slow growing. Hope to hear more from you. Bee

smitjo2
Posts: 3
Joined: Oct 2013

I agree with Lisa getting a second opinion is a fantastic idea. My Mom's orginal ob/gyn said she had a stage 2 uterine cancer. When we went to better doctors it actually turned out to be Stage 4. If you can try to get a evaluation from the Cancer Treatment Centers of America. I am not sure where you are located but they are all over.

They ahve been so helpful for my Mom and our family. They arrange all the hotel and travel arangements, have dieticians, therapy, massages. If you need anything please let me know.

Jodi Smith

http://www.cancercenter.com/

smitjo2
Posts: 3
Joined: Oct 2013

I agree with Lisa getting a second opinion is a fantastic idea. My Mom's orginal ob/gyn said she had a stage 2 uterine cancer. When we went to better doctors it actually turned out to be Stage 4. If you can try to get a evaluation from the Cancer Treatment Centers of America. I am not sure where you are located but they are all over.

They ahve been so helpful for my Mom and our family. They arrange all the hotel and travel arangements, have dieticians, therapy, massages. If you need anything please let me know.

Jodi Smith

http://www.cancercenter.com/

kumar
Posts: 93
Joined: Aug 2009

Hi,

 

How are you now days?

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