Need help with side effects...

[Louise O'Brien]

I don't want to sound like a wimp because I know some of this has to be tolerated - I'm just wondering if this is normal.

I just had my first dose of docetaxel four days ago - and I am feeling spectacularly lousy. I was told this drug would be easier to tolerate than the FEC I was on (although I was also told everyone is different.) I tolerated the first FEC treatments reasonably well although days 4 & 5 were no picnic. I never got sick.

I have the worst headache and and the worst case of muscle aches - in my back, legs and especially in my neck. It's a really stiff neck and it's brutal. I can barely move my head. I don't have a fever - and so far don't have any symptoms of neuropathy. I have some shortness of breath but it is not severe and for the first time I am experiencing overwhelming fatigue. I have no fever and I am not nauseus although I have stomache pain. Maybe I was spoiled before - for the first three treatments - my blood counts remained normal.

I'm going to call them tomorrow - and again, I'm sorry. I don't mean to sound like a complainer when I know everyone has gone through something like this. I just don't know when the norm crosses over into something that might be more concerning.

I have a hseet that lists all the side effects - dividing them into more common, less common and rare - and it seems like the muscle aches fall into the latter two.

[Mary Jo]

Oh, please don't think of yourself as a "whimp" or "complainer" - you definitely are not and your feelings are very normal and understandable.

I think what you are experiencing is normal. It "hits" all of us differently and at different times. I started with the A/C routine and didn't have too much trouble and some suffer terribly on that. Then came the Taxol. Although that was better I did experience a lot of body pain also on that.

Hang in there. You're doing great. It gets OLD after awhile - I know -- but one day SOON it will all be hindsight and the benefits we get from this "CRAP" are worth what we may go through.

God Bless and a Huge hug I send,

Mary Jo

[kari]

Hi Louise,
You have every right to complain! Don't ever apologize for saying how crummy you feel--we have all earned the right to complain, with everything we go through with treatments!
I had Taxol after my AC treatments last year. I found the Taxol to be worse than AC--yes, the muscle and joint aches and pains were almost unbearable. I was ready to give up the treatment after one session. I didn't sleep for three nights, the pain at night was that bad.
The symptoms began by about 48 hours after, starting out with general muscle stiffness and aching, especially lower back and legs/feet. Then it was painful to walk--between back, hips, knees and ankles, I felt like I was 90 years old. I tried using extra strength Tylenol, then Ibuprofen, then Tylenol #3. The doctor had given me Oxycocet, but that made me nauseous (the codeine). I finally found the combination of meds that worked for me was: 1/2 Oxycocet with 2 extra strength Tylenol every four hours. I also used Zofran for the nausea, every twelve hours. By the 5th day after treatment, I cut back on the meds to every 6-8 hours, or as I needed. By about the 7th day, the pain was tolerable without meds. I found it helpful to keep a record of my symptoms--when they occured and what I used to try to alleviate them.
I even tried putting my legs in the hot tub and massage therapy for the aching--didn't really help. My husband would rub my feet at night--that was helpful at the time.
I am so sorry you are experiencing this. Try whatever meds the doctor gave you, or ask for something stronger. It's easier to get a handle on the pain before it's actually there (something to remember for next time). Can you contact your chemo nurse and ask her opinion? I found that mine was wonderful, and offered a lot of good advice on how to handle the side effects.
Hang in there. It will get better. All the best to you.
Blessings, Karen

[Barbara H.]

Hi Louise,
Kari described it well so I will not repeat my story. I was also told that most people find Taxol easier than AC. That was also not the case with me. I had horrible bone pain and needed strong pain medicine to sleep that didn't help that well.
Best wishes and I hope that your treatment team will find some pain medication that will help you.
Barbara H.

[LAURIE]

I have had 5 treatments of Taxol anf Herepetin now and have lots of bone and/or muscle pain. I usually have it in my thighs, feet, collar bones and neck. Although it also moves to short pains in all parts of my body. This week I started to have the numbness in my fingers and toes. It is very slight. I hope it does not get worse. I had a terrible time on A/C. The quizzyness is something I do not miss. I get treatment on Tuesdays and feel great on Wedenesday, and have pain Thursday- Saturday. I have not found the right combo of drugs to combat the bone pain. Vicodin makes me too constipated. I also have a hard time sleeping on Tuesdays and Wednesdays. Overall I would rather take this over A/C, because this means I am closer to being done. Isn't it great we can complain about side effects on line and so many people can relate. I have tried to describe to my friends and family and I really can't find the words to explain how I feel. I am so glad you all are here.

[Audrey]

Hi Louise, I remember experiencing a lot of aches while on Taxol and a friend who had been there recommended soaking in a hot bath with lots of Epsom Salts. I did this regularly during treatment and it did seem to help a bit--maybe it will provide some relief for you. Also, let your oncology nurses know how you're feeling, they should be happy to help you find some way to get through the treatment as comfortably as possible. If it helps, you can always remember "this too shall pass" and brighter days are ahead.

[Bev]

Do call your oncs office for advice. My onc nurse told me to take B12 before the aches set in. Worked for me. Try looking for Gina Popp's advice, look up members, then post by members. I think she recommended zinc and epsom salts as well. I didn't have a problem with taxol. The premeds, decadron and benadryl made me feel strange. BB

[Catherine]

I finished Taxol Aug 06. My onc gave me a steroid for the pain. Dexamthasone. I could barely walk when I called on a Friday night and said I can't take it any more. This worked for me. A/C was not a lot of fun either. I can honestly say, that I am starting to forget what I went thru. I finished radiation 45 days ago, and that is the most prevelant in my mind. My point: absolutely no fun to go thru any of this...but the bad experience does start to fade away. Do not feel bad about complaining. We all understand.

All the best, Catherine in Oregon

[TSund]

IS the bone/muscle pain that people experience from the TCH or actually from the Neulasta that is so often given? Is there anyone who has had this pain WITHOUT having had the Neulasta or Neupogen?

THanks

Terri

[tousled1]

I experienced severe joint/bone pain while on taxatore. Even the premeds didn't help. Also I received Neulasta shots the day after each chemo treatment becasue my white blood cell count dropped to almost nothing. The Neulasta also causes bone pain. In comparison the A/C was a breeze. You will make it though your treatments. Please ask your oncologist for something for the pain. Soon it will be just a faint memory. Hang in there, it does get better.

[TSund]

HI Kate,


Did you have the neulasta for each treament where you also had pain>?

THX

TRS

[Ceesun]

I was on taxotere, too and had a very rough time. The 2nd day after chemo through about 8 days-I was wiped out. My whole body ached. I call it taxo-terror....you just have to endure and your oncologist will try to make you as comfortable as possible. Best wishes Ceesun

[sassy]

I had Neulasta during A/C and had lots of bone pain, but I found the Taxol harder, had bone and muscle pain. I took Darvoset as needed during treatment. I worried about taking pain meds and discussed it at length with my onc. He finally said, "Are you in pain?" When I replied "yes", he said, "Then take the Darvoset!" It really did help. Perhaps this is a drug you couldl try.
________
SIDE EFFECTS OF ZOLOFT (http://www.classactionsettlements.org/lawsuit/zoloft/)

[TSund]

Hi Sassy and Ceesun,


I'm still trying to trace whether the taxol or the Neulasta/neupogen causes the bone pain. Did you have neulasta or neupogen during Taxol or Taxotere?

THanks,

Terri

[Ora]

After my first taxol treatment, I literally could not walk. I do have a question - was it the Taxol or the steroid? I thought they said it was the decadron (steroid) that caused my muscle/joint pain. I went from one strong treatment every three weeks to a weaker treatment weekly. They gave me pain pills and as everyone has said, I finally got through it. Hang in there.

The Neulasta did not bother me.

[TSund]

Ora,

Did you have the pain PRIOR to the Neulasta? Or how did you distinguish that it was from the Taxol?

I don't know that the steroid causes pain, I know the Neulasta can, and have read the the Taxanes do, but I've been unable to figure out if people that did NOT have the wbc or rbc builders also had the muscle/bone pain. (if not, this points more clearly to the wbc drugs)

Ruth has had only one TCH treatment, no pain at all, however her WBC are now low and they are talking Neulasta next time. She is borderline ANC, not super low so I'm wondering if we ar better off winging it w/o the Neulasta for the time being.

THX


Terri

[MJo]

A wimp you are not! Taxol was easier for me than AC, but my friend went through treatment the same time I did and had a very rough time on Taxol. Pain issues and blood counts. My friend called the oncologist's office quite a bit when she was on Taxol. I agree that they try to make you as comfortable as possible. DOn't try to tough it out -- take painkillers!! You will get through. Only three to go if you are doing dose dense.

[Becky]

The taxol (much like Taxotere) was torturous for me. The brutal leg pains were horrific - like electric jolts! I only started running again about 3 months ago and had to only walk to insure proper foot placement on the ground. I was afraid if I started to run, I would break my ankle as I really didn't know where the hell my foot was until recently. I think I got major nerve damage from the stuff and my nerves have finally regenerated or something.

You are not a complainer. You are just stating a fact. I took Percocet when needed during treatment. My radiation oncologist asked me how I was doing on Taxol during my consultation and I told him. He said he had actually seen women in wheelchairs (temporarily) because of it and it is not imagined or blown out of portion. But this will pass and the tremendous amount of steroids you have to take prior to and during do not help the situation in the least. Make sure you really discuss your side effects with your onc so you get something. I didn't because I didn't get along with my first onc and didn't deal with him unless I had to. This certainly affected my health somewhat.

Hugs to you

[sassy]

Terri,


I took Neulasta during dose dense A/C. I did not have it during weekly Taxol. I tolerated the A/C and Neulasta much better than the Taxol. I really think overall I tolerated well, and put up a great front. I do remember one night just breaking down and telling my husband I was just tired of hurting. By the end of Taxol I just HURT, everywhere. The good thing is--it does end and it does get better. Taking pain meds is an option I would recommend--after all, we are dealing with a serious disease and some pretty serious treatment! There is no sense in hurting if something can help.

Wishing you the best,
________
Zoloft injury lawyer (http://www.classactionsettlements.org/lawsuit/zoloft/)

[TSund]

Hi again.

Just processing this stuff re: pain from the Taxanes vs pain from the Neulasta.

Becky,perhaps you would lend your wisdom here. It is clear that both can cause body pain. I suspect that some of this pain (particularly those who are affected in feet, lower legs, and hands) is from the peripheal neuropathy? Or am I wrong?

Did those NOT on Neulasta/Neupogen also get the back/neck or all-over pain?

Thanks for your input.

Terri

PS re: neuropathy pain, did folk here do the icing down of hands/feet? Did it seem to help?

[TSund]

I think Sassy may have answered my question as she said she had the all-over with no neulasta.