I've decided to drop my cat off and then drive into a tree

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Chronos,

I was also wondering, since you are so knowledgeable, whether I iced too much and that in itself caused nerve damage. I put ice directly on the wrists and all the fingers inside oven mitts for the entire infusion...so approximately 4 hours with only a ten minute break during Herceptin.

The neurologist (the other day) told me to put fabric between the ice and the skin, take breaks and watch out for signs of frost bite.

If the icing did cause the issue, or if it's simply carpal tunnel syndrome that coincidentally began this month, maybe I would be reducing the dose for no reason.

Thank you for any information.

Maybe the icing caused some frostbite...typically any time you ice a body part you should have some insulation between yourself and the ice because the ice is too cold for the skin. But if it is chemotherapy induced neuropathy and has resolved in the past and you are almost done, it may just be temporary. I think I would personally go with what the oncologist feels is best. Even if you do end up with some long term neuropathy you still might be able to adapt and play your instruments.

I don't know if the temporary spikes in blood sugar that dexamethasone could cause could contribute to neuropathy. It was just a thought but you can discuss it with your oncologist. Dexamethasone is very important to prevent severe allergic reactions to the chemotherapy.

You can check your blood sugar on the days you have dexamethasone with a glucose meter that diabetics use. You would need the meter, lancets, lance, test strips, testing solution and band aids. It might be easier though to just tell your doctor you would like to know if the dexamethasone increases your blood sugar on the days you take it and they can test your glucose levels on one of those days and keep your carbs and sugar in take low on those days to keep it from rising too high if it is. It would be something to talk to your oncologist about, but hey you are almost done with the chemotherapy, I bet any nerve problems will be temporary, just give it time. I severly pinched a nerve in my hip once and had a numb patch for four months before full sensation finally came back. Things sometimes turn out better than we think they will.

The online forum I liked was at http://www.breastcancer.org.

Fluter, I am so sad that you have so much to deal with. You are very brave to face all the various treatments and each day is a challenge. I don't know myself, but I "walked through" the process with a friend...going to all the treatments, surgeries, etc, etc and it was heartbreaking. That was more than 10 years ago and she is still cancer free. There is hope after cancer. And, we hope, some beautiful flute playing. I hope you keep reaching out to WP community for help.

Cancer free at 7 years, here. You just gotta stay the course.

(hugs)

I'm sorry your chemo treatment isn't going well =(

I know when I was going through it, it probably was more to do with the cancer itself than the chemo, but I was just completely wiped out all of the time, and never felt like playing guitar...even though I had it with me in the hospital the whole time. Plus, they were always drawing blood from my fingertips, I was sure it would just be painful.

Eventually, that all wore off.

I was having trouble with a lot of other medications, as well. I remember the Neupogen, when it started working...I basically just laid on a heating pad until the pain subsided enough to sit in my computer chair for a little while.

They always say that the best thing is to just stay positive.

BeaArthur, congratulations on 7 years!

Also, thank you for that site, I'm going to join it today.

Did you find it hard to communicate with doctors and nurses? I'm a pretty decent communicator these days but my oncologist and I are usually not on the same wavelength so to speak. She gets impatient with my answers and questions and it puts me on edge so conversation is even worse. This has been the case for many, though not all of the other doctors and nurses too. I might change hospitals but I'm worried the same thing will happen at the new hospital. I did go to a different hospital once for a second opinion and felt very calm in the new one, felt it was much easier to communicate and understand what kind of answers they are looking for. Maybe because it was a calmer hospital, but maybe because they wanted to make a good first impression? Do they think about first impressions with new paients, or not really? Anyway, the stress of going to the doctor the rest of my life is adding on to my feeling overwhelmed.

SabbraCadabra, I take Neulasta and the first round was awful because it didn't occur to me to take tylenol. The little pains were coming so fast from every direction on every body part. I couldn't count them. Crazy awful. But I've taken tylenol for the last 2 rounds and it helps so much.

It's important that patients feel comfortable with their doctor and different doctors and facilities will yield different patient experiences. At this point though I would be hesitant to do anything that might delay your chemotherapy schedule so if you are considering transfering to a new doctor or facility I would make sure they can do so without any delays or interruptions in your treatment.

I absolutely found communication hard, but worse with some people than others.

When I was referred out of mammography, I first saw a sadist surgeon. I had to have a painful biopsy procedure done. He refused me any anesthesia/analgesia, but after I insisted (I can be bossy and pissy, and in some cases that's a GOOD thing) he finally wrote a script for ONE hydrocodone which my husband could go downstairs to the pharmacy and fill. Then even with that, I was having some pain during the procedure and said that hurts. "That's good," the doc said. He quickly realized that sounded a little callous, so he then said "I mean, I'm sorry it hurt, but that's how I know I'm doing it right." His manual breast exams were also high-pressure. I have fibromyalgia and costochondritis, and I told him his pressure was awfully heavy. "Well, that's necessary to do a good exam." (Not true - maybe necessary for HIM, but not for all doctors.) He said on the next visit I would get a book by Dr. Susan Love. I already knew I would never go under the knife with this doc, but I went to the next visit anyway, got the book for free, then asked the receptionist on my way out of the clinic to help me get a "second opinion" (but I was really shopping for another doctor). My second opinion included a consult with a surgeon, a radiation oncologist, and a medical oncologist. I hired the surgeon and radiation oncologist, both of them young women, during my second-opinion visit. (It was determined I did not need/want chemotherapy.) Oh and by the way, neither of them needed to cause pain to do a breast exam!

Even at that - I had to argue with the radiation oncologist. I had a small tumor in the nipple area, and did not see the point of whole breast irradiation when localized radiation could probably suffice. I asked about brachytherapy and she kept saying "but whole breast irradiation is the gold standard." I finally observed she didn't seem comfortable performing it and could she refer me to someone with more experience in it? (That turned her around FAST.) I got localized external beam radiation that spared heart and lung. The actual radiation techs did not seem fazed at all about this deviation from that damn gold standard.

The Susan Love "Breast Book" was very helpful in overall orientation, and then of course I researched the hell out of my diagnosis online. Another great thing about breastcancer.org is there are regional and local subforums and you can actually ask other patients what their experience was with Dr. X or Hospital Y. How great is that? I am sure the doctors and hospitals don't like that feature!

The thing is, you don't want to change doctors mid-treatment, if at all possible. In your case, I'd stay with your doctor for now. But maybe there are ways to get more of what you need. You might try talking to the nurse more, or in some cases there is a physician assistant or a nurse navigator that can help you. It's even okay to say to this person "Dr. Blank is usually too busy to discuss at length - can I ask you some questions?"

I will observe that although my specialists sometimes put other things ahead of my optimization, the affiliated professionals were all VERY kind and sympathetic. Radiation techs in particular were very supportive to me, and made each visit almost pleasant. I sometimes think of specialists as responsible for knowledge, and nurses/PAs/technicians as responsible for patient interactions.

You also asked about the different vibe at the second hospital. FOR SURE. My sadist surgeon was a general surgeon at an outpatient surgery place, the second-opinion folks were at a specialized breast center. Mammography techs at the first place were rough and callous, those at the breast center were much more caring and gentle. I absolutely encourage you to look for a change of hospital/doctor at a point in your treatment when that makes sense.

Hope this helps.

I still didn't decide, and today is the day I have to call the doctor.

I just distracted myself for two days instead of thinking. How do I decide?

I'm sorry - decide what?

I have to decide whether to reduce the chemo dose or keep it the same.

I made a list of things and thought through it. I think I've come to a decision, and will think another few minutes then call.

sounds like a plan.

We're thinking good thoughts for you.

Life can seem cruel at times but we can overcome this by keeping the faith that everything happens for a reason. You could one day be helping people overcome their depression and fears. Treasure each day because no-one is guaranteed tomorrow. I'm saying this also so I can remind myself of that. I have drug and alcohol addiction and if I don't get help for it, it'll not think twice about stealing my life from me...literally. There are times I feel hopeless and helpless with it and I hope I can overcome it because it's killing people left and right. Having cancer is not a death sentence, many people recover from it. If you have a higher power you believe in I suggest you thank them everyday you wake up. I need to remind myself of that too