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