UPSC and hormone replacement update - MA Bound

NoTimeForCancer said:

hi Molly, it makes sense that

hi Molly, it makes sense that hormones couldn't be used if you have UPSC, that would just feed that cancer and the last thing you would want.  

I am hoping you can tell us a little more regarding your neuropathy comment.  Are you saying you developed neuropathy from the chemo and are looking for relief?  I think some of the people have tried accupuncture but am not sure of the outcome.  

The way my doctor explained it to me when I was diagnosed was that UPSC was not hormone sensitive, unlike some other forms of uternine cancer, but he advised against hormones because  --using my words now, not his -- it's a weird, rare cancer about which a lot is still unknown, so hormones would not be a good idea. I checked with him again recently  because I was concerned that the sudden lack of hormones might be contributing to my very slow hair regrowth.

I do have pretty severe neuropathy in my feet. I developed neuropathy in my hands first, after my first chemo and then later in my feet. It was severe enough that my doctor wanted me to switch to taxotere, which I did not want to do. Fortunately, he and my nurse practitioner suggested I try acupuncture, which I have been doing twice a week since my second chemo, which will be a year in October. It provided enough relief and -- we think -- prevention that I was able to stay on taxol and finish the 6 cycles. I've tried cutting down to once a week acupuncture, but the pain is never far away when I try that.  That's why I was interested in knowing if anyone knew more about the prescription nutritional supplement my friend's podiatrist prescribes for his patients with diabetic neuropathy. I know that's very different from chemo induced neuropathy. but I'm pretty much trying anything for which there is some evidence.

Thank you for responding. I hope you are safe and well in the midst of the pandemic. 

jan9wils said:

The supplement might be alpha

The supplement might be alpha lipoic acid. B vitamins can also help but I would recommend checking with the doctor about dosage. I was taking more of these than I needed. 

Thanks, Jan. I've been taking alpha lipioc acid since the neuropathy developed, and also the B vitamins. My nurse practitioner had a list of everything for which there was the slightest bit of evidence along with a list of things for which there was no evidence but they were safe to take. I've tried everything on both lists. I had to stop the fish oil because it was making me sick and the cymbalta (I think that was the one) because it didn't work for me and was still making me wake up every couple of hoursall night long, even after weeks of taking it.

I'll get my friend to check with his podiatrist. I did look it up at the time but have forgotten the name. It's by prescription only but my insurance doesn't pay for it, and, what with the twice weekly acupuncture, I decided not to take on another unreimbursed expense.  But I'm reconsiderinh recently with an upsurge in the neuropathy.

Thanks again.

I will ask my friend to check with his podiatrist, and when I have it I'll post the name for you. I also will look into trying benitiamine and let you know if it helps. 

Have you noticed any relationship between a lack of sleep and the severity of your neuropathy? (I mean a causal relationship, not the neuropathy pain keeping you up.)  The intensity has shot way up in the past week or so, and I'm trying to figure out if there is a cause I can identify.

Thanks and take care. 

Armywife said:

Question for Molly

Molly, I'm so sorry you're going through the neuropathy.  As I was reading your message above, I saw that you said your doctor suggested switching to taxotere, and you didn't want to.  Can you share why?

Hi Army Wife,

My understanding was that taxotere was considerably more difficult to tolerate, and I live alone and work full time, so I needed to get through chemo with as little sickness as possible. Another deciding factor for me was the association of taxotere with permanent hair loss. I knew that it was a rare taxotere side effect, but since I had a rare cancer, being told a side effect was "rare" didn't reassure me much, as I'd more or less lost confidence in fate by that point. I also was concerned about another rare side effect, but I've forgotten the details -- something to do with capillaries. 

I also was, and am, convinced that the carboplatin was playing a big role in my neuropathy. I had no neuropathy in my feet at all until the one chemo cycle in which I had only carboplatin and no taxane. The neuropathy in my feet hit me like a sledge hammer that night, and the neuropathy that I still have is in my feet. (The neuropathy in my hands, which started after my first chemo and really concerned my doctor and me, has resolved.) Taxol is so associated -- rightly so -- with neuropathy that I think people who are on taxol/carboplatin regimens assume that neuropathy is all coming from the taxol, when carboplatin is definitely neurotoxic, even though much less so than cisplatin. 

So, in balancing both the common and rare side effects of taxotere against the benefit of it being much less likely to cause severe neuropathy than taxol, I decided to stick with the devil I knew rather than risk the rare side effect I feared most combined with the common side effects of it being harder to tolerate. What made my doctor comfortable with me sticking with the taxol was that, on his and the nurse practitioner's recommendation, I'd started acupuncture and that brought the neuropathy under control before each new chemo cycle, something he thought absolutely necessary before continuing with taxol, given the severity and early onset of the neuropathy in my hands. I'mso fortunate that the acupuncture worked for me, as it doesn't work for everyone, I know.

It was asking whether anyone had switched from taxol to taxotere that first brought me to this discussion forum, so I know many women on the board took taxotere and had no problems at all -- are you one of them? -- and I would never advise anyone to make her decision using my calculus.

One of the things that surprised me about chemo is how barbaric it is and how much is not completely known about how it does some of its damage. I would have assumed, had I thought about chemo at all before my diagnosis, that the best decision would always be clear from data. It's tough having to make decisions when it feels like there are no good choices. My robotic surgery was a marvel of modern medicine, and then chemo felt like it was a few steps up from leeches. I've wondered how my brilliant gyn/onc, who thankfully did both my surgery and chemo, copes with that dichotomy -- maybe for him it's just different methods to save lives.

I hope North Carolina is beginning to feel more like home for you.

els19 said:

I used L-Carnitine powder

I used L-Carnitine powder last time I went through chemo to help with neuropathy and it did seem to help. Sorry, I just checked my notebook I kept during chemo and it was Glutamine not Carnitine. It did help. 

Thanks, Els. Did you use a pill form? As I recall, my  nurse practitioner told me the research was with injection glutamine, so I decided against trying the pill form, as I was taking so many other supplements at the time (all with the approval of my medical team, I should add). If you used the pill form and found it helpful, I'll give it a try now. 

p.s. After reading your post, I just now went to MSK, and they have a new page up on glutamine, so thanks much fot posting this. I will definitey give it a try, as my other suppplements are down to a manageable level. 

Good luck!

els19 said:

Glutamine

I used the powder because it's what my oncologist suggested. I really thought it helped. 

Thanks, Els, that is what I ordered yesterday based on your recommendation. I love this discussion board, but I find the platform so clunky that I often don't recall who said what, and I"d forgotten it was you who told me that glutamine is helping you. Fingers crossed that it helps me, too.

Frances081920 said:

METANX

I believe the prescription supplement you are looking for is METANX. I hope your doctor will prescribe for you.

Thank you so much, Frances, that's it! I recognied the name when I read it, so I'm sure you're right. My doctor will definitely give me a prescription. He already said so, but I couldn't remember the name or any details so that he could prescribe it. I doubt my insurance will pay for it, but it's worth a shot if there's a chance it will work. Have you tried it or do you know others who have?

Thanks again,

Molly

tequila said:

UPSC - Have been on HRT for 8 years since being diagnosed

When I was diagnosed with UPSC in Sept. 2012 I too was told that unlike other uterine cancers it was not  hormone sensitive. It was especially important for me to know because I had  been on HRT (Premarin & Prometrium) for 12 years prior to that. I discontinued the Prometrium immediately as it was no longer needed after the surgery but I am still on Premarin 8 years later - but a lower dose. I have tried numberous times to get off the Premarin ( prior to being diagnosed and several times since the two  surgeries  ) but the hot flashed are unbearable. I tried everything else I could.

Hi Tequila,

I'm sorry you're having such a tough time with the hot flashes. I didn't experience any menopause symptoms because I had too much estrogen to be hormonally in menopause right up until the hysterectomy, despite being in my mid 60s. I thought I might have hot flashes and other symptoms after the surgery, but fortunately I didn't.  When I asked about HRT on the board, I hadn't yet seen my gyn/onc for my 6 month check up, which had been delayed because of COVID. When I saw him he said that although UPSC isn't hormone sensitive he didn't want me to go anywhere near hormones, so I didn't. It may have been something to do with my particular case, but I make it a practice to listen to him. 

If you're anxious about the HRT, I hope you can find a way to get off the premarin. 

Good luck,

Molly