Metastatic endometrial cancer

snyderpm said:

update
For information purposes, I wanted to update my condition, and ask some questions. I had chemo Thurs 20, carboplatin/taxol, and then Friday 21 had the nulesta? I had a lot of pain from the nulesta, and it ended Tues eve. I haven't taken any pain meds for 36 hours. The problem was I wasn't taking enough pain meds, because when I did, I could stand it, but I only did that the last day. I just didn't want to take a lot of meds. I don't want to go through that again, and I would rather die. Anyway, I have also been weak. What are the worst days for people doing carboplatin/taxol every 3 weeks? I was told about day 4,5 and 6. Also, will I get weaker with every chemo treatment? Thanks for your comments.

neulasta
I wonder why some of us have neulasta and others not - I am one who NEVER got this shot after chemo. I would encourage you to discuss the NEED for this with your doc. It seems that some docs order routinely rather than out of necessity - mine is conservative. I hope things get better for you. I think it is smart to limit the amount of medication.

kkstef said:

I agree with Mary Ann....ask you Dr. if it is really necessary! I didn't start using Neulasta until I got to the point where I could not keep my counts up and was delaying treatments. In the end, even that wouldn't do it and I stopped chemo earlier than anticipated. I was fortunate as I had very little pain from the injections.

Sending you warm thoughts and energy to help you through this trying time. I know you can do it!!

Keep us posted!

Karen

My experience with carbo/taxol
I just finished 6 cycles of carbo/taxol on 19 Jan. It wasn't great but it was do-able. I had the infusions on a Wed, was OK Thurs then tended to drop like a stone with joint aches, tiredness, "fog" brain" on Fri which lasted until Mon/Tue the following week. Just took it easy, went to bed when it got too much and generally tried to chill out. Took codeine based painkillers when I needed them. Luckily I didn't have to work. By the following Wed I was usually OK and generally improved a little each day until the next cycle. I didn't have the Neulasta shots (I live in the UK and it doesn't seem to be the usual protocol here). But I was loaded up with steroids, antiemetics and antihistamines prior to each infusion and for 3 days afterwards.
Helen

lociee said:

from 1 to 4
Hi snyerpm, your diagnosis almost mirrors mine. Now 63, active (I also ride - or rode) overall very physical and health conscious. Then wham! I ended up with a total hysterectomy - they decided it was stage 1 and no further treatment was necessary. Then two years later I jumped to stage 4 metastatic - with a tumor along my colon and one on my lung- both metastatic uterine cancer. Everything rushed along after that. I refused surgery because they thought they might have to take my rectum along with the tumor. I had the 6 rounds of carbo/taxol - then a few rounds of doxil - numbers stopped responding and they said I'd be dead in 9 - 10 months unless I had radiation. With radiation they said I'd live a little longer. Well, that was a year and a half ago and I'm still here and nowhere near dying. I now find out that they don't really have a clue. It's basically all a mystery to them. Turns out there are a lot of mysteries out there - most of the women on this chat line have had several reoccurances and are still going strong. I work full-time, and although slower and tired, get around fairly well. My advice is to just take things slowly. One step at a time - sort of look before you leap and really understand each step. I think I was in a fog most of the time and was taken up with their rush. Do a little research - get some other opinions. The most significant thing I had was the first chemo - i felt better after chemo - achy - but in less tumor pain - which was lovely. As Lisa said, chemo nurses ar the BEST! Anyway, I remember how scary the whole thing was and feel for you.
xo, Mia

My recent diagnosis
Hi lociee,

I was just diagnosed with Stage IVB endometrial cancer (serous papillary type). You can imagine that I am devastated. My doctor referred me to a clinical trial using avastin, which has serious and deadly side effects. I won't be treated with avastin, because of what I have read about it. I am planning to pursue chemotherapy with with Paclitaxel and Carboplatin. Would you have any suggestions from a layman's point of view? I am 57?

Lisa 00 said:

Snyderpm
Snyderpm,
MaryAnn is better than I at expressing her thoughts. She gave you some great advice. Stay positive, and I would disregard the 1-3 year statement. You will lose your hair with the chemo treatments, but I found that that was the most disturbing part of the chemo. There are 'cold caps' to help deter the hair loss on the head if you're interested in trying that. I waited until my hair started to come out, about 7 days after the first infusion, and I used hair clippers to clip it down to stubs. Then, over the next months, the stubs will even fall out.

Personally, having had endometrioid adenocarcinoma that was, most very likely in my lymph nodes, but undetectable on the CT scans, I think you have a good chance at beating it. I say that it was in my lymph nodes, not because I was surgically staged, because I wasn't, but because I had developed a bit of lymphedema in one leg a few years ago that has no other explanation.

So, stay positive, take care of yourself during the chemo and please don't let it get to you too much as you haven't even been through treatment yet! Chemo really isn't that debilitating. You will be able to still do a lot!

The infusion alone will take 5 hours, so you will be at the doc's for probably 6 hours. They didn't tell me that when I went for my first one and I didn't bring any food with me. Also, socks or slippers are nice to wear during the chemo. You will be getting up a lot during the infusion and going to the bathroom because of the volume of fluid that goes in. And the nurses will take good care of you. I have found that, while I am guarded when it comes to doctors, nurses are the best.

Let us know how you do!
Lisa

Endometrioid adenocarcinoma
Lisa, Thanks for the positive words... I was recently dx with endometrioid adenocarcinoma stage IVa grade 3. I am 45 years old, run 2 miles day, eat right and have a child. So this dx smacked me in the face. I started carbo/taxol 2 weeks ago. I will have between 6 to 8 treatments 3 weeks apart, with a PET scan after every 3rd treatment. Its so frightening, I keep looking at my 10 year old and think this can't be happening. So again, thank you for the positive words.

snyderpm said:

One more Chemo, and update
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.

That low blood pressure has to be very scary
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.

snyderpm said:

One more Chemo, and update
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.

Better Immune Boosters than Neulasta

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 said:

Last chemo over
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

They also prescribe megace for anorexia.
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.