help help help

Snufi · 01-20-2009, 12:44 PM

need the truth now guys since friday in horrible pain TCH 1st round had to go to the hospital, horrible muscle nerve pain, horrible sore throat, mouth sores, nasty taste in mouth, no appetite, can barelt walk, pain meds do little, dr. says rare side effect of cchemo, AS OF TODAY CAN BARELY FUNCTION, IS THIS THE WAY IT IS SUPPOSETO BE or do i have anunique response thanks, snuf

Believe51 · 01-20-2009, 01:21 PM

Aw Snufi, sorry about the way you are feeling after the chemo. These experts can give better advice on the drug combo. I have had 2 friends (out of many, many) that had such a reaction to this combo. One had to be hospitalized during chemo since she had no choice, her options were running out. Your doctor may want to switch the chemo regime if you are having difficulties that do not get better.

Make sure you keep hydrated as best you can before, during and after chemo. Try to suck on some ice chips or popsicles during the infusion. Biotene makes wonderful mouth products to keep the mouth healthy, especially during times like this. For the 'bad taste in the mouth', Altoids Sour Apple or Citrus, OR lemon drops worked wonders for that 'metal' taste in his mouth. The mouth sores can be painful, thus adding to the no appetite problem. Once you get them under control consider using the Biotene.

The pain meds can always be changed for the next appointment to something stronger. Remember, pain meds taken for pain is different than an average person catching a buzz from them with no pain. You need not only something for pain but something for 'breakthrough' pain. Again, the experts can better help you with all of the pain from this combo more than I can.

Appetite is a tough one to conquer. One knows they must eat to maintain a healthy body during one of the roughest things it will be subjected to. Easier said than done! Try eating small quanities of food throughout the day. This is all easy to write but I do not belittle any of this. Ed had such severe eating dificulties that he had to go on Magace to stimulate him. He also had a prescription for Marinol, a prescription based marijuana. During these tough times he refused to take it but had little choice at one point.

Oh My Sweet, please do not take this post as anything other than....'he has been there done that' while I watched in despair. Treatment is extremely difficult but you appear to, IMO have had a bad reaction like the doctor thinks may have happened. Again, this post is to let you know I am listening and loving you through this very tough time.

Please keep us posted when you are feeling better. I am sure that you shall be rescued from the experienced family members here. Their advice will be much better than mine. Sending you a gentle hug and whispering in your ear that we are right here walking besides you through this trying experience! Stay strong and tough. You will get through chemo, maybe not this combo, but you will make it by. When you do, we will all be clapping and cheering for your accomplishments. Love>>Believe51

lkc Gumby · 01-20-2009, 02:06 PM

Dearest: I am so sorry you are going through this. Everyone has different reactions to chemo.I did fairly well on dose dense AC,but after my first infusion with Taxotere, I had all the sxs you described. My onc adjusted my Tax down a wee bit, which helped. But basiclly through this tx I needed a narcotic pain releiver, and sleep medication. I could barely walk.
Anyway, talk to your team, and get what you need to be comfortable. Keep hydrated and eat anything you have an appetite for ( For me it was Hagen Daz Vanilla Ice Cream )
I promise you , this will be a memory. It does ge better.
God Bless.

tricia keegan · 01-20-2009, 02:21 PM

Sorry to hear you're suffering this so soon, did you have a neulasta or neupagen shot? That could be the culprit of the bone pain. I had the horrible taste and sore moth too, I used to freeze cranberry juice in cubes and found sucking on one helped before eating. Everyone is different in how they react though but I hope you're feeling better soon.

freyja · 01-20-2009, 02:47 PM

Everyone's response is different, but your symptoms sound like many I've had or heard of people having before. These things do happen. One thing that helped me through muscle problems and mouth sores was L-Glutamine powder dissolved in water and drank. Ask your doctor or nurses about it. Also, what are they giving you as premeds with the chemo. There are many different kinds that should help prevent many of the side effects. Benedryl, Dexamethasone (steroid), I can't find my notes so I'm not sure they're spelled right and I don't remember the exact names of others...I'll let you know later, or others will, too. Also, some people have allergic reactions to the premeds. They should try different combinations until you find what works for you. Ativan is a wonderful anti-nausia pill. Compazine is another.
I'm on my way to my herceptin appt. but I'll check in later and try to think of more ideas for you. Talk with your nurses. They often have a lot of knowledge about these things and can help you, and they're often more available than doctors.
love, Celeste

ElaineM · 01-20-2009, 03:27 PM

I am so sorry you had a hard time and you are not feeling well. I hope you feel better soon.

BonnieR · 01-20-2009, 04:26 PM

Snufi, what does your onc have to say about what is going on? What is he suggesting be done? It sounds like you are experiencing most of the symptoms I have heard of before, but exaggerated. For instance, I had "bone" pain and difficulty walking at times, fatigue and loss of appetite, but not to the degree you are describing and not so early on. So you may be particulary sensitive to the chemo. Hopefully there are drugs and treatments to counteract all these symptoms (for instance "magic mouthwash") and I hope and pray your doc can get you going on them. As others have said, talk to your team, especially the treatment room nurses. Please keep the faith. And keep us posted.

Laurel · 01-20-2009, 05:20 PM

Snufi,

My lst round of chemo was with dose dense AC. I had a severe migraine for 5 days. Later my onc. told me it was caused by the long acting anti-nausea med, Aloxi. She told me it would probably not occur a second time as my body would become desensitized to it. That is what did happen although it took until the third dose for me to fully tolerate it comfortably. On the positive side, I never experienced nausea or vomiting with my chemo. I was given an additional med called Emend taken orally for 3 days post chemo with the AC's also for nausea. I share this in case you are experiencing nausea.

When I hit my final 4 rounds with the Taxol and Herceptin I experienced the "bone" pain. It really isn't bone pain, but nerve pain. Taxol is wicked on our nerves. My onc. prescribed Percocet and suggested taking it every six hours for 3-4 days post-chemo. I tried less potent pain meds without relief, so after the lst 2 rounds I did finally take more of the Percocet. I never took as much as she suggested. When taken before the onset of the nerve pain and continued regularly for a day or two you can manage to keep the discomfort under control. My nerve pain began approx. 36 hours post infusion, so I began my pain meds about 30 hours after the infusions. I also took Ativan 1 mg. every night for a week after each infusion. Without it I absolutely could not sleep.

The pain and stiffness in our legs and feet seem to be nerve related. I still have numbness in my feet, but this should subside within a year to a year and a half.

Chemo really is miserable and I thought it totally sucked. Try to remember it is your best option. I cried with my lst round and wondered how I would ever make it through the next seven. I was not certain I could do it, but even with that fear nagging at me, I knew deep down I'd tough it out. I wanted to live, and so do you. Hang in there, Snufi. Chemo really is awful, and you really are very brave. It takes real guts to get knocked on your butt for a week, climb back up to your feet, and toe up to that line to be infused with that poison again. Guts. I'm tellin' ya, guts. You'll do this somehow. I know you will.

I will pray you have rest, freedom from pain, and peace.

Snufi · 01-20-2009, 06:43 PM

Thanks for all of your concern about chemo. really not sure I could do this again. this pain is very severe, this from a woman who gave birht to six children. Already it has bee n a week with not much let up. Do any of you know will drs just prescribe tamoxifen? If not why? My tumor was 97%ER. I would htink taking that drug would be better than nothing. Thanks, Snuf

Becky · 01-20-2009, 06:54 PM

At the least, consider Herceptin with Tamoxifen. It is the T in the TCH that is your achilles heel. I could barely walk on the taxane but I didn't want to give up and regret my cancer returning. Try, try, try if you can

freyja · 01-20-2009, 07:07 PM

Snufi,
I can tell it's really bad right now, but it doesn't have to be that way. The first treatment can be extra rough because no one knows what will happen. You can find the right combo of drugs to make it go much better for you next time. If your oncologist isn't working with you on this and offering help and alternatives, you might need to get another opinion from a different oncologist.
It really can work and be good for you. Determination is key.
Do what you feel you need to do, but I think a lot of us here are hoping you'll keep up the fight. Just think, it feels bad to you, but it's making those cancer cells feel even worse, and that's what we want.

Jean · 01-20-2009, 09:16 PM

Have you discussed with your dr. about cutting down the treatment and going in for treatment weekly? This may eae the side effects.

Your reaction on first trt is very harsh and it certainly sounds like an alergic one. But don't dispair as cutting down the infusion amount of the drugs could be your answer along with anti alergic meds. Are you on a steriod prior to treatment?

I had bone pain but that did not hit until round 3.
I would take alieve and it would decrease by day 3 after treatment. I also would place a warm heating pad on my legs and I also put a pillow unde my legs. Warm baths were also helpful.

I would use warm boiled water and rinse my mouth
and I eat at least two yogurt per day (I believe the yogurt kept the ph in my mouth at a healthy level) I did not experience any mouth sores. Try the yogurt and I hope it will help you also, and it provides a good source of protein.

Sorry that your first treatment was so difficult. But as Becky said, don't give up and I am sure your dr. can provide additional care to help you to continue.

Best Wishes,
Jean

Hopeful · 01-21-2009, 12:06 AM

Snufi,

Are you pre or post menopausal? Post meno, highly ER+ women derive the least benefit from chemo. 97% ER+ sounds pretty darn high to me. Are you PR+ also?

Hopeful

jhandley · 01-21-2009, 05:44 PM

I am guessing the C is carboplatin? Has a lot of unpleasant side effects. Apparently the long term data on taxol/or taxotere plus herceptin shows it is just as good without the carboplatin. Perhaps rather than not have any chemo have just TH which would be much more manageable. Also taking some "Immune support" (Greenridge) which has reishi mushroom extract in it ...will up your white blood count and stop some of those other side effects..worked for me. I took it a few days after chemo and stopped 3 days before the next one.
Cheers
Jackie (down under)

BonnieR · 01-21-2009, 09:56 PM

Jackie just reminded me..... I recall now that one of the oncs I consulted with suggested that I do TCH "without the C" because he thought it was the rougher of the lot...
At any rate, this all bears discussing with your onc to develop an approach that will work for you. Maybe a different combo, different schedule....
Keep the faith.

harrie · 01-22-2009, 12:29 AM

Snufi,
Did you take Decadron (corticosteroid) prior to your TCH treatment? If so, what was your schedule for that. The corticosteroid is supppose to help cut down on a lot of reactions, esp the nerve related ones.
The Decadron schedule most are on is to take it the day before, day of tx, and the day after.

Maryanne

Kimberly Lewis · 01-22-2009, 04:10 AM

I felt terrible with Taxol and stopped taking it after the first dose. Besides the pain I had an itchy rash from my neck to my hips. My Onc said we should drop it as I had done the AC. I am going to be 4 years out this August. So far so good!

TSund · 01-22-2009, 12:54 PM

Does anyone know if there any cons to taking vitamin B?(complex B to cover the bases) This can be effective in helping the nerve problems. Even if there are conflicting opinions on supplements during chemo, perhaps would help you avoid quitting the chemo.

Ruth also did the astralagus and mushrooms and I believe it really, really helped her. She went off them in a window around chemo also. Also took L-glutamine in a protein shake. Avoid the neulasta if you can, and keep the steroids lower also.

If naught else, stay with the Herceptin!

Wishing you the very best...

TRS

TRS