Wednesday, November 16, 2011

it is what it is (and what it is is ok)

Herceptin makes me feel lousy. Or maybe it's the Demerol they give me from flopping around like a fish with a fever. Either way, after every treatment I feel achy and hungover for a couple of days.

It's a not nearly as bad as when I also have chemo (and I bounce back more quickly) but I'm still really dragging my butt around, when I bother to get up at all. I'll go for a walk later but it will take every ounce of the meager willpower I possess to get myself dressed and out the door.

I saw the cardio-oncologist again on Monday and that appointment went as well as could possibly be imagined. My heart was slightly damaged by the Adriamycin but has remained just below normal, since being on the Herceptin. The verdict: I can continue with Herceptin. I don't need to have heart scans every three months, as I have been. I don't even need to be followed by a cardio-oncologist unless my ejection fraction dips below 45 (it's currently around 49) or I experience symptoms of heart failure (um, yeah).

It appears that this whole heart scare was a tempest in a teapot - a reminder that when it comes to treatment of women living with metastasis, doctors are just making stuff up as they go along. They really don't know the long term effects of the drugs that keep us alive because our being alive and in remission is still so unusual. It's a bit unnerving but, given the alternative, I'm happy to serve as a human guinea pig.

Cross-posted to Mothers With Cancer

11 comments:

Ann said...

Keep on in there with the goodish news!

laurie said...

Thanks Ann!

CancerCultureChronicles said...

You are so right Laurie about the doctors level of knowledge at the metastatic stage. One of my doctors openly admitted that the giving of chemotherapy is "more art than science" at this point. A very comforting thought. As for side effects, particularly of the cardio-thoracic kind, I've found there is quite a reticence to actually admit they're caused by chemo or other cancer treatment. Something needs to change.......

laurie said...

I agree. My docs have been good about admitting possibilities but I worry that their super cautious approach to my treatment is actually costing me in the long run...

Ann said...

The good news is - there is a long run ;) Ax

Joanna Moore said...

Hi Laurie,

Are you a Herceptin veteran or is this new to you? I am suspecting you are an old hand at this. I just wanted to leave a word of support that Herceptin used to give me the blahs for about 3 or 4 days, and now my body is so used to it that I just get slightly sleepy the first day I have the infusion. I hope you get to this point.

I am not fresh off the circuit from having Adriamycin like you are. I suspect as you heal from that, everything will get better. Or at least I hope so....

P.S. I have had Herceptin continuously (every three weeks) for three and a half years). I have learned a few tricks, the most important one being to get exercise the first day. It is as if sweating it out negates all the side effects. Lately, I go to water aerobics right after treatment and the results have really been miraculous. I hope this could be a help to you, but I know that our treatment circumstances are different so this may not apply in your case.

laurie said...

Joanne! Thanks for the advice! I'm very interested in hearing others' longer term experiences with herceptin. I've been on herceptin for five years but all by itself (no chemo) for about 8 months. Adriamycin was more than 5 years ago but it seems to have done some permanent damage. I will try sweating a bit more next time around - the Demerol makes that bit challenging...
And Ann- good point.

Joanna said...

Laurie,

I had Herceptin yesterday as I do every third Wednesday and I have had Tykerb with it for about 18 months of that time. I had hardly any reaction this time but every so often, it gives me a headache and general malaise for a few days. I would love to figure out the reason why sometimes it is better than other times.

Keep in touch. I often use the phrase "it is what it is" to describe my life...

Allie said...

Joining the "it is what it is" chorus line. I thought my 5 years out (from stg 4 diagnosis) would be a huge celebration and never expected the ambiguity I would feel. The health problems are adding up now though - related to zero estrogen, auto immune challenges caused by a steady diet of NSAID's or perhaps zometa infusions, yadda, yadda. Most days I shake my head at least once....who is this person?
It helps to remind myself that somehow for my child and my husband I am still who they need me to be. Plus I've learned a ton about what makes a well lived life (nothing like stage 4 to fast track those insights) and even some about living with dignity in the face of some nasty uncertainties. So lets party on shall we!

laurie said...

Joanna - I hear you. I have spent years trying to figure out why some rounds are better than others. Yes, please do stay in touch.

Allie- Except for the details of the drugs, I could have written your comment. I appreciate your ongoing comments so much - I wish neither of us lived with mets but I'm so glad we are both alive to live with it.

Beth L. Gainer said...

Laurie,

I'm sorry about all you are going through. I know the news is kind of good, so that's great. I will keep healing thoughts going your way.