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Old 04-05-2009, 07:45 AM   #3
Debbie L.
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Join Date: Jul 2006
Posts: 463
YES! - but I can't find the reference

I remember having this discussion on another list during my chemo in 2001. We are not talking about the aches and pains, nor about feeling tired and fatigued.

If this is what I had, it's an entirely separate phenomenon. And I don't think it's the taxane. I noticed what I called "jelly muscles" during A/C, which I had separately from Taxol. During Taxol, the basic fatigue continued, and pain was added to the mix, but the jelly muscles began to improve rapidly.

I think one of the reasons this isn't reported often is that most people just lump in into the "fatigue" category. But for me, it was entirely separate from that. I did have fatigue but this muscle thing was separate and fairly steady-state (whereas the fatigue had ups and downs).

I had to be pushing myself for it to become evident - hiking my steep hill trail, for example. Then it was as if my thighs had lost all strength. I couldn't really even get out of breath because the jelly-muscle thighs wouldn't let me go fast enough. Does that make sense? This was not noticeable walking (even long walks) on level ground or climbing a flight of stairs - it had to be more strenuous but then it was very obvious.

After chemo, I remember reading an article about chemo's effects on muscle (I think it was on muscle mass but it could have been something else) but darned if I can find it now. But it validated my observations. Sorry I cannot remember more. I wanted to send it to my onc, who gave me that blank look ("are you nuts?") when I reported this jelly muscle thing. "Yes, fatigue is a side effect of chemo". NO! It was a different thing.

But fortunately for me, a temporary thing. May it be so for you, too, Dianne.

Debbie Laxague
PS: The swelling, I believe, is a taxotere thing - maybe others will respond on that symptom, which I do not think is related to jelly muscles.
__________________
3/01 ~ Age 49. Occult primary announced by large (6cm) axillary node, found by my husband.
4/01 ~ Bilateral mastectomies (LMRM, R elective simple) - 1.2cm IDC was found at pathology. 5 of 11 axillary nodes positive, largest = 6cm. Stage IIIA
ERPR 5%/1% (re-done later at Baylor, both negative at zero).
HER2neu positive by IHC and FISH (8.89).
Lymphovascular invasion, grade 3, 8/9 modified SBR.
TX: Control of arm of NSABP's B-31 adjuvant Herceptin trial (no Herceptin, inducing a severe case of Herceptin-envy): A/C x 4 and Taxol x 4 q3weeks, then rads. Raging infection of entire chest after small revision of mastectomy scar after completing tx (significance unknown). Arimidex for two years, stopped after second pathology opinion.
2017: Mild and manageable lymphedema and some cognitive issues.
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