Herceptin and Carboplatin

I had Carboplaitin, Taxotere and Herceptin.  I was very fatigued, but was able to cook, bath, and drive myself to and from treatments. Day three was always the worst.  I had metal mouth and some mouth sores, but i don't know which chemo caused that.  Just drink plenty of water and ginger ale or ginger tea, use plastic eating utensils.  It is doable.  I was alone, but did have people come and check on me. I am 64,

I am doing the TCH also, but it has been considerably worse than expected, and has caused me serious kidney failure (carboplatin is hard on the kidneys), and severe gastointestinal symptoms, GERD, prolonged nausea, intense cramping abdominal pain, diarrhea, constant nosebleeds, etc. I am losing weight uncontrollably, my liver enzymes are elevated, white cells down, and my blood pressure has been doing wild swings.

After hearing all the "it's doable" type of comments that proliferate on this and some other message boards, I had felt reassured that doing chemo was not going to be too terrible, and decided to go for it on that basis. In fact, it has been debilitating for me. I have been unable to take care of myself (my severely disabled life partner just died last December, so I live alone, which is difficult), and even at the age of 53 the chemotherapy has been a huge blow to my health. I am only two treatments into the course of six prescribed, and have no idea how I will be able to complete the entire course. I have even been too sick and weak to make it in for doctors appointments and supportive care, that is how poorly this has gone for me.

I think it is prudent that people hear all sides of the reactions to chemotherapy, because it is an unpleasant shock when it turns out to be much harder than expected. Not everyone does well on it, can work through it, etc. No matter which protocol people are on, there are significant risks and side effects to be taken into consideration.

For whatever it is worth, this is a cautionary note. Each person is an individual when it comes to response to chemotherapy. As a very fit, health conscious individual, neither I nor my doctors would have predicted how poorly I would be doing with this chemotherapy, it was a rude shock.

As rescue07 said, not all of us follow the "rules" or expectations for side effects.  I was surprised by how horrible Taxol was when AC wasn't as bad -- I was expecting taxol to be a breeze.  

I take herceptin and carboplatin with a lower dense taxol (3 weeks on, one off), and it still sucks, mostly due to the taxol.  I do find the lower dose less bad than the dose dense, but not a picnic. Herceptin alone was OK when I did that.  My onc said Carbo is less toxic than other drugs and women into their 80s have tolerated it well.  Again, it all depends on the person. 

Since Herceptin and Carbo are "gentler", hopefully it will go well for you NCIF.  No doubt I don't need to say, but I will anyway, if you have any issues with pain and mobility, tell your onc -- and keep telling your onc until you feel as comfortable as possible.

Rescue07 -- I hope your onc is searching for something to help with your side effects. I'm so sorry about the loss of your life partner, you have had to cope with so much.  I'm so sorry.  And I appreciated your very eloquent post -- we all need reminders that not everyone has a good, or bad, time according to what one is told to expect.

Hi Ellen

Thanks so much for your good wishes.

I discussed lower dose with my oncologist and he has now been able to justify lowering the carboplatin dose to his supervising physician. I asked for and was granted a change of the Herceptin from high dose with the TC every three weeks, to weekly low dose, which is how Herceptin was dosed in the original clinical trials (so there is evidence based precedent for them to base this choice on). I asked that we may need to consider a change of treatment protocol if the kidney failure continues, even at the reduced carboplatin dose, but TCH is now considered to be the treatment of choice for my tumor type, so it is worth fighting for.

I would prefer to try a reduced dose TCH every two weeks, but there have been no studies that used that delivery, so insurance will not pay for a reduced dose, higher frequency treatment.

What insurance will pay for really limits how flexible doctors can be with straying from standard protocols, in addition to their fears of liability if they do anything out of the ordinary. Many really are very timid and self protective, and it is difficult to reassure them. One of the supervising oncologists kept answering me with, "None of that will matter when you are suing me later" and try as I might, there was no reassuring her of her safety with my case. These folks get very traumatized when they are sued, it affects them for their entire career, and it permanently changes how they conduct their practice. They don't want to go out on a limb with treatment variations, and have to fight with insurance companies to get paid, if they are also afraid of malpractice suits in the end for straying from evidence based practice. It's too much stress for them.

NCIF:  I think the majority of people receive few to moderate side effects.  I'm one of those unlucky ones (probably in the 10% range) that get ALL the side effects.  It's funny because before I start a chemo, I refuse to read all the SEs in the pamphlet just in case it's the "power of suggestion".  Doesn't matter, I'm just more sensitive.

As for prior health.  Being a healthy person pre-cancer actually "did me in".  I had regular visits with my family doctor but because all my tests were so good (I had the blood pressure of an athlete, and my bone density is that of an 18 year old - I'm in my 40s, I also had no history of cancer in my family), so they didn't check as closely as they should have.  No mammagram because of my young age.  By the time I was diagnosed I was at stage IIIB.  I haven't changed my eating habits much since diagnosis and during treatment because I was eating well beforehand.

Bottom line, if I hadn't had chemo initially (I was at a more advanced stage), I can tell you I probably wouldn't be alive today.  That's a real sellling factor for me.  My kids appreciate it too.

I think it's just the luck of the draw, environmental isses and heredity.  Kinda scary when you think too much about it but your advice is good - "this too shall pass".