The Carbol /Taxol treatments took my life away

[Renate]

I had 4 Carbol Taxol teatments and I can hardly fuction anymore. Hands and feet incl. knees are numb and stiff and very painful. Have seen a Neurologist, he told me I have to live with it, if I would be young the nerve endings would repair itself, but not at my age. I take Lyrica for the stabbing, tingling and burning and Morphine at Night for the pain.

I had a Scan done last Monday and will see my Onco tomorrow. He wants to put me on Avastin. However, I will not take any Chemo anymore. I have no symptoms of Long Caner. I just wait for it to come up.My Onco said: Will put you on Avastin and wait until something pops up.

From exercising 5 times a week, playing Tennis & Golf I will pretty soon be in a wheelchair. Can you imaging how angry I am?

Thank you for letting me vent.

Renate

[recce101]

"Renate" Have seen a Neurologist, he told me I have to live with it, if I would be young the nerve endings would repair itself, but not at my age.

Renate, please don't take that as the absolute truth. Doctors, even the best of them, simply don't know for sure, and some may give you the most pessimistic outlook so people don't get their hopes up too high and then blame the doctor if little improvement is seen. I'm 72, and my nerve endings DID repair themselves, though it took several months for the tingling to disappear completely. My feet are still a little numb (I can't tell if I have socks on unless I look), but they've been like that for years and not the result of chemo. I think there's a chance you WILL see improvement in the coming months, first in the random stabbing pain that causes loss of leg muscle control, then later in the general tingling and numbness -- but only IF you don't have any more Taxol. Excuse me for being so blunt here, but I'm surprised your oncologist had you continue on Taxol when you were already experiencing neuropathy as early as the first cycle.

Aloha,

Ned

[jaminkw]

Renate: Like you I was healthy, active and exercised 4 to 5 times a week before I was hospitalized with pneumonia and a pleural effusion and ultimately diagnosed with cancer. By the time I was into my sixth infusion and put on Avastin maintenance, I felt like an old lady. Well, I am 64 but didn't feel really old before all of this.

When I went into remission and they put me on Avastin maintenance, it was really hard. Being in remission was great but staying on chemo was in my mind not good. It's been more than two months now, and I'm not feeling as awful as I was before so I'm living with it. I am planning a break, length of time undetermined, in the Fall. But I don't know about Avastin and neuropathy if you already are experiencing the symptoms. I do know my oncologist asked the first few times I had it about numbness in my hands or feet. Like Ned I've had numbness, pain and tingling prior to cancer, but in my hands not my feet so it's hard to tell.

Don't get discouraged just yet but on the matter of Avastin keeping the cancer from progressing, the evidence isn't all that strong.

I know where you're coming from when the treatment makes you feel worse than you did before they told you you had cancer.

pm me if you'd like, Judy in Key West

[Patti B]

Renate-

We have already talked about this and you know that I have said I will support your decision, whatever it may be. BUT - I am still concerned that the information you got from the pharmacist about Avastin causing more neuropathy could be wrong. You really need to check with your oncologist on that one.

You know I am so sad about this decision and hope that you will leave your options open to continuing chemo in the future. You are my friend and I truly do care about you.

We all feel cheated in some ways that we have this horrid disease. But I do understand how you feel and I know how you have struggled with this neuropathy.

You know I will be there for you whatever you decide.

Hugs - patti B.

[Renate]

Ned, you are giving me hope,maybe a miricle will happen for me too.

I did tell my Onco. Dr. Ramlingham a well respected Lung Oncologist after my very first treatment ec. I can not undertand it either, that he went that far. Sometimes I have the feeling these Doctors want to experience certain treatment planes. Emery University prides itself as one of the best Cancer Clinics.

Right now it gets worse with the Neurophaty.

I will see a different Neurologist 7/2 and will see what he says. I am desperat and will do whatever it takes to get better, but right now by 8 PM it is so bad, I just want to go to bed and take the Morphine and slep.

One more question for Ned, since you seem to be a Computer Expert. How do I insert my picture. I did try, but my picture is too big. I do not know how to decrease its size.

Renate

[SandraL]

Hi Renate. I am saddened to hear about the horrible side effects you have been dealing with. I hope you start to feel better soon and can get back some quality of life. Vent away...this cancer game ain't any fun at all. Iit is crap, crap, crap and nobody deserves it. Please continue to consult with the docs re other options for you. Lots of positive thoughts and prayers your way.

Sandra

[recce101]

"Renate" How do I insert my picture. I did try, but my picture is too big. I do not know how to decrease its size.

I'm sending you a PM with my email address. If you'll send me the photo attached to an email, I'll resize it as an avatar photo and send it back for you to insert.

Ned

[Connie B]

Hey Renate,

I LOVE YOUR PICTURE! Your a breathe of Fresh-air my friend!

Please know your in my prayers that you'll be feeling better real soon.

Please don't give up hope just yet? (((((RENATE)))))

I know how much you want to feel half human, lets just keep thinking positive on that one. You can do it, You can do it. It's not FUN, but you CAN DO THIS!!!!

[MarGre]

Hi Renate - you should see at least some improvement over time. I too am surprised your doctor continued you on the treatment despite the evidence of severe neuropathy. When I started to develop problems my doctor cut back on one of the drugs till it improved.

I was on Avastin 2 1/2 years - as far as I know neuropathy is not a side effect. I had no noticeable side effects from Avastin, but it does raise your risk of clots. Well, several weeks ago they discovered a pulmonary embolism so now I am permanently off the Avastin.

I've done very well with treatments but of course don't know whether we can attribute that to one of the chemo drugs or the Avastin.

It's good to vent sometimes. I hope you start to see improvement soon in your pain.

Marcia

[shineladysue]

Renate,

I'm a bit out of touch with current treatments, but I do remember the doctor prescribing B vitamins for Mike. The Taxol caused him neuropathy , but never to the extent that you have it.. My heart goes out to you . His was mainly his finger tips and he was a bit unsteady on his feet. He always thought the vitamins helped. I think it was B-12 he took , but can't be sure. I'm sure there are others here that might know or you may be already taking them yourself. I hope something helps you, soon.

Sue

[Yorktown Linda]

Renate,

My 29 year old daughter has a chronic pain condition with some of the symptoms you described. She sees a doctor in CT. who is board ceritified in both pain management and neurology. He is always trying something new -- latest drug to receive FDA approval is giving her immense relief at the moment.

My two cents worth would be to see a pain specialist and/or neurologist. They really can perform almost miracles.

Don't give up!

Linda

[carolhg]

I am sorry to hear that you had such bad sided effects from the carbo and taxol. I had that chemo combo also. I did have neuropathy in my fingers and toes. I was advised to take vitamin B6 and B12. They worked for me. I have no neuropathy in my fingers anymore and occasionally I will feel mild neropathy in my toes. Of course you want to talk to your doctor before you try any new vitamin, herb or medication. Hope this helps.

Carol

[Bette64]

Hi Renate ,

I'm just now reading your post and wanted to reply. Nick was right about the neuropathy not being permanent. Our doctors guess at what age our body might recover. I had the same chemo as you in 2006. The neuropathy in my toes and feet was so bad, I could barely walk. As time went on, it got better. My last and 4th treatment of taxo/carbo was in Aug. 2006. I still have mild numbness in my toes but nothing like it was. I am 64 and my doctor told me the neuropathy might be permanent. But even today, it is gradually improving.

I don't know about Avastin making it worse. But remember we are each different in how we react to these meds/treatments. One of my doctors told me that my body had not aged like some 62 year olds (time of my surgery).

Best wishes in whatever choice you make,

Bette

[Renate]

Hi Bette,

I am very happy for you regarding the Neuropathy, and congratulation you will soon be a 2 year LC survivor. Your Cancer was discovered early an that is the key for survival.

I do undrstand your Neurapathy was almost as bad as mine. I would like to ask you a few questions if you do not mind.

Did you get the symptons already after the first Chemo treatment?

Or did it accumalate?

What Medication did you take ? Neurontin or Lyrica ?

And what kind of Painkillers.

And most important: How long did it take to go away?

I am seing another Neurologist who is specialized in Neuropathy next Wednesday.

I feel it's getting worse every Day. My husband has to do all the household chores.

My fingers are getting stiffer every Day. It takes a long time to type this message.

I see myself in a wheelchair petty soon. I have a walker already.

Renate

[Bette64]

Hi Renate,

I got the neuropathy after the second treatment. It gradually increased. By the third treatment, I had a checkup with my neurologist who said I had 'multiple neuropathies'. I didn't have any feeling in my toes, ankles, upper thigh, and my elbows. All that remains now is around my ankles and my toes. I did take neurontin for a short time but had to discontinue it due to the side effects of extreme fatigue and weakness. I have myasthenia gravis so it aggrevated that illness as the main symptoms are muscle weakness and fatigue.

I would say it took 6 months after my last chemo treatment for some of the neuropathy to go away. It was over a year before I could wear some of my shoes - felt like bubble gum was in the soles of my shoes. I only have it around my ankles and toes now so that isn't as disabling.

Best wishes,

Bette

[Barb73]

Hello Renate,

Your posting caught my eye regarding the neuropathy.

My husband, who was initially treated with carboplatin/taxol (at age 74), along with concurrent radiation in 2005, experienced neuropathy in toes and it was there for some time. He often complained about it, so I know it was bothering him a lot.

However, over time, it disappeared. He did take B vitamins, and still does to this day.

He has had carbo/taxol three times over the span of the three plus years, and just completed the third set of infusions (carbo/taxol/Avastin) only a month or so ago.

My reason for posting to you, Renate, is that if Bill, who is now 77 1/2 years old, can experience a disappearance of his neuropathy there is hope.

We cannot claim that we know for certain why it faded away, but it did, and he walks, does gardening, and mows the lawn on a regular basis. We know that everyone is different, but adding one more example of neuropathy gone may give you reason to look forward to improvement.

May yours also improve and be less of a concern for you.

Wishing you all the best,

Barbara