Tch after-effects?

[DianneS]

Good evening, ladies,

I finished 5.5 treatments of taxotere (docetaxel), Carboplatin and Herceptin (still on Herceptin until Oct.)

My legs would feel a little rubbery for a few days after every treatment. My last (yay!) treatment was March 12, and my legs, especially the front of my thighs, feels weak when I try to walk uphill for any distance. My legs also swell from the knee down, which is something they didn't do before. Usually it is more pronounced in the evening. The doctor checked my heart, etc and all seems to be ok. So is the leg weirdness from the Taxotere?

Is this normal? If so, how long does it last? Hiking was/is one of my few pleasures....

Thanks,
Diannes

[Lori R]

Dianne,
The muscle aches and pains must not be all that uncommon.

While on Chemo I tried to remain active and walked each day. I had a pain in the groin and inside quad area that I was sure was a recurrance of some sort (isn't that the first thing we always think???) I even demanded that I have an ultrasound. Fortunately no tumor or clots of any sort.

Over time the ache has resolved itself. It did take about 6 months after the completion of Chemo.

Here's to letting your body rest and heal from all those toxic chemicals.

Lori

[Debbie L.]

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.

[Laurieanne]

Hi Dianne,
I had that same problem on TCH. I would notice it
going up stairs mostly. It felt like I just rode a bike
100 miles. I'm now 4 months out from TCH and don't
seem to be having that any more. The swelling in your
legs I didn't have, so I can't help you there. I also walked almost everyday during tx.
Hopefully this will resolve for you soon. Now that your off TCH. It's hard on our bodies. My doctor said," It would be so much easier than A/C which I had 9 years ago, but I didn't find it to be any easier.
Hang in there. It gets better. Don't push yourself, rest when you need to, lots of fluids, I'm sure you know the drill.
Thinking of you & wishing you the best,
Laurie

[Debbie L.]

However, it does mention cisplatin which I assume is related to carbo:

http://cancerres.aacrjournals.org/cg...act/62/10/2771

Last bit:
"A combination of cisplatin and ifosfamide, two drugs that are widely used in the treatment of cancer patients, also depressed the expression of proteasomal subunits in muscles from rats bearing the MatB adenocarcinoma below basal levels. Thus, a down-regulation of ubiquitin-proteasome-dependent proteolysis is observed with various cytostatic agents and contributes to reverse the chemotherapy-induced muscle wasting."

Debbie

[DianneS]

Hello ladies,

thank you for responding! That is exactly what I call this - 'jelly legs' and it only occurs after I have been walking upstairs or uphill. The strength is just gone. I have to stop while I catch my breath as well. This used to happen for a day or so after my 3rd and 4th treatments of TCH but it has never lasted beyond a few days. It's not getting worse but it's not getting better either.

I have been walking 45 mins to an hour all through my treatments, and rarely missed a day. Just have to hope that the poison will work itself out. Hasn't been a month yet since the last treatment...I know, I am not patient . If it is still bothering me at my next Herceptin tx April 23 I will ask the doc about it.

Meanwhile I am taking supplements to get my immune system back to normal and hopefully better than it ever was. I am an active person and just hate that this has happened to me, or any of us.

Thanks for your support.

Diannes

[Jaimieh]

Dianne~ I am still in treatment but I had this after my 3rd treatment and it scared me to the point I went to my oncologist office to get checked out. I was scared that there was something going on with my heart or lungs. It was nothing but chemo. side effects. I was very happy to hear this and it litterly took 1 hour to get back to my car which should have taken about 15 min. Before my diagnosis I was running 1/2 marathons and now I walk 1/2 a mile on good days

[DianneS]

Jaimieh,
I know. This stuff knocks you down, but I guess that's what it's supposed to do. Hang in there - if I can do it, you can too! Just be sure to take the Dexamethazone as directed. After my first treatment I got woozy the next a.m. and after talking to the doc on the phone they figured my blood sugar had dropped, so I had to wean off of Dexamethazone for about 3 days after chemo. Also, I was hungry a lot from the Dexa but not for healthy stuff. I wanted junk! I have gained 10 lbs and am getting back up to speed slowly so I can lose the fat. For some reason, today I was able to walk UPHILL without being totally out of breath or stopping and - my legs didn't feel like jelly! I do have some swelling below the knees but not too bad.
Some other side effects I got you might also have: sensitive to cold when eating/drinking, ringing in my ears (Carboplatin), dry skin, especially on my face- I found Burt's Bee's Carrot Day creme to be absolutely wonderful for this. Keeping skin moisturized is a good idea because this 'poison' is so drying. I had a flushed face for a few days after chemo. I only had 5.5 treatments as I wasn't tolerating the Taxotere well and my onc said there is no evidence that 6 treatments is any better than 4. I still opted for one more (insert eye roll here) and wonder if I should have stopped at the 4.5 point.

You're right in the middle of things now, Jaimieh, and you sound like you're tolerating the TCH well. You'll be back to running marathons - just be patient (like, I should talk ) it's difficult if you're active and have to slow things down for awhile. I'm looking at my sea kayak and wishing I had the energy to go paddle for awhile...have to remember my last treatment was not a month ago! Just keep on walking, it doesn't matter how far you go or how fast.
Was just thinking - were you told to drink extra water/juice for the first 3 days after treatment? I did and didn't get mouth sores. Also I think it helps flush the stuff out of your system.

Keep on truckin'
Diannes

[Jaimieh]

Thanks Diannes

My legs thankfully recovered after the last treatment and I am currently sitting in the infusion chair with Herceptin going in now. Hopefully all of my bloodwork comes back good and I can get my TC Whoooo blood work was fine. Welcome #4

I think you hit it right I have always been active and indepent and now I am suddenly I need help most of the time.

[harrie]

Diannes, I would get very out -of-breath going up stairs and other exercise activities, my legs felt a bit weak and could feel it even going from a squatting and standing up position. For me it was due to a low red blood count from the chemo. I think I took Procrit to help elevate the RBC, but after the chemo was completed, my body (and RBC) went back to normal and I felt fine again.

['lizbeth]

I had the jelly leg syndrome as well. Went for a walk in Balboa Park after my first infusion. I thought it was such a wierd feeling, like walking through water or after riding miles and miles on a bicycle.