Monday, November 9, 2009

Oncology Appointment

The technical term for what was contained in my pathology report, according to my oncologist, is:

"Your breast was a mess."

I guess I'll need to get my medical dictionary out for that one.

He said he'd never seen anybody with my pathology who didn't have lymph node or vascular invasion before, and that I'd gotten very, very lucky. "Somebody is looking out for you, that's for sure."

No dictionary needed for that one. I really should go play the lottery.

My chemo regimen is going to be grueling. It's TCH: Taxotere, Carboplatin and Herceptin. I'll have six rounds, every three weeks, of Taxotere and Carboplatin. Every week for an entire year, I go in for Herceptin. Then, I'm semi-free; I'll take Tamoxifen every day for five years. That though, is a pill I can take at home.

Wow. I'll be treating this cancer for seven years.

Dr. Blair gave me the choice of starting before Thanksgiving or after. I chose after - my stepdaughter is coming to cook for us, and I don't want to be in bed - I want to eat turkey with my family. So, my first chemo infusion is December 2nd, first herceptin is December 9th, 2nd herceptin is December 16, and the 2nd chemo is December 23rd.

(Note to self: start shopping now and forget the after thanksgiving deals.)

(Note to family: it may be a meager gift year. Consider my continued breathing as your main gift.)

I'll lose my hair about ten days after my first infusion, so warm hats for Christmas is a gift idea I never would have suggested before. :)

During chemo, I'll be taking a steroid to prevent fluid retention, and compazine and ativan for nausea, and possibly neulasta to get my white count up. Any other side effects that pop up will be dealt with at the time.

My main concern, which I brought up but wasn't really addressed to my satisfaction, is what happens if I get migraines because of these medications? If it happens in the infusion room, they'll give me demerol. But, if it's something that happens after, I got the distinct impression that I'm on my own.

I don't think I can possibly get across to these medical professionals how much these migraines have affected my life. The only ones who understand it are neurologists.

Maybe I can get a neurologist to treat me for the side effects of chemotherapy?

I can live with nerve pain. I can life with fatigue. I can live with bone pain. I can live with nausea, diarrhea, bloating. I can live with hair loss. What I can't live with is migraines -- not a year's worth.

How to describe it to somebody who hasn't had one? It'd be like giving birth every day of your life. And, not an easy childbirth either. For you men, it'd be like having somebody kick you in the balls every hour - forever.

Let's just hope that I'm not one of the people who get week-long headaches from herceptin. Maybe I shouldn't get ahead of myself. Maybe my cancer luck will hold.

Because of my focus on migraines, I completely forgot to ask Dr. Blair about getting a port. I think having a port surgically implanted is pretty standard for people who have to have a year of infusions. I'd rather not - it's ugly and leaves a scar that you can't hide, but I have small veins and since mastectomy they can only use one arm for sticks. An IV in one small-veined arm every week for a year might be a challenge.

I guess this will ruin my chances of ever being an IV drug user too.

Darn. Cancer takes away so much.



  1. Get a port. A scar is better than having the veins in your arm ruined as a result of chemo. You can ask them to put it over to the side more to help make the scar less prominent.

  2. Definitely get the port. There are 3 possible sites you can have it placed - chest is most common, then there is upper/inner arm, and then mid forearm. Mine is in my chest and it even though it was annoying at first I don't notice it anymore except when getting changed and see the scar. But scars fade. With the # of infusions you'll be having, you won't want to ruin your veins and that can happen very early on in the process since chemo can weaken the veins temporarily. It's worth having a port. I wasn't excited about it either - and didn't want it in my chest but once it was there I realized that was the best most out of the way place for me. Upper/inner arm would have drove me nuts rubbing against my body as I moved and forearm would have been more bulgy since there's less depth there in my opinion. Also, scars can be corrected if you don't think it fades enough after a while. My friend just had her port scar corrected and it looks great - barely noticeable at all now.

  3. Hi Ann - glad to you are up and ready to tackle the next cancer challenge. I am now 4 down out of 8 chemos - I will be starting Tax a week before you. I have lots of hats but the Baker Boy is my favourite - more fashionable than that Kojak look - which is so last season dah...ling ...

  4. Thanks all. The onc's nurse called me yesterday - forgot to get my height. And, I asked about the port. They said no, that they would try without unless they can't find veins. I'm okay with that. I know Andriamycin is so toxic it burns the skin so they always do a port for that, but maybe with TCH it's not always done. Anyway, I would like to try without. The fewer invasive things I have to do the better I'll like it! My decision from the get-go was do the least possible to treat this cancer, which is why I kept my left breast.

  5. I did TCH last year. Finished the Herceptin in May of this year. I chose not to have a port. No troubles with my veins and they are fine now. After the chemo, I was able to go every 3 weeks for the Herceptin. I don't suffer from migraines. I never had the Herceptin headache either. The Herceptin was a piece of cake compared to the chemo.

  6. Hey Ann,
    I had my first consult with an oncologist today. I'm still pre-surgery but wanted a big picture, as I recently found out that I am ER+/PR-/HER-2+. She is recommending the 6 cycles of TCH and subsequently herceptin for a year, followed by tamoxifen! Sounds like your same regimen. I have the chance to do this pre-surgery as part of a clinical trial and am thinking about that ...

    Best of luck with your migranes, hope you don't get any!! And keep posting!

  7. Hey Sue, we are sisters! There aren't a lot of us ER+/PR- women out there!

    I might have done it pre-surgery given the option. I really wanted lumpectomy and was hoping they would do neoadjuvent therapy to shrink it down and give me that chance. That's the entire reason I had the MRI. However, as it turns out,that wouldn't have worked anyway, there was just too much cancer. It's kind of scary how little showed up on sonogram and MRI. (Enough to get me the right treatment though)

    My only concern with neo-adjuvent would be if it masked any lymphatic invasion. I would want to know that. Can you have an SNB first to see?

  8. Hey Ann,

    good insight you have - yes they are doing the SNB first so that I can be accurately staged. There is a good possibility the neo-adjuvant treatment would wipe out cancer in nodes, and they don't want to understage me by sampling those after treatment.

    Even if my tumor, which isn't that big on MRI (2.2cM) shrinks - I'm doing mastectomy. Nothing shows up on mammogram for me, and MRI did indicate some other "questionable" spots - so - off with it! Freaks me out but for my breast composition I think it's the right thing.

  9. I'm not sure why I just now am reading this, but let me tell you...I got horrible, horrible butt kicking migraines. Just awful. Would last two or three days sometime. I breezed through chemo like nobody's business. I had exactly one migraine, and it was a response to the neulasta shot. That one knocked me for a loop. It was a 3 shot of morphine headache. It was so awful that I said to the oncologist, "We need to figure out something to do about this because if it is going to be like this all through chemo, I'd just as soon be dead." She switched me to neupogen, and it was a pain because I had to go in there every single day for a shot, but I did not have another migraine. In fact, I was just reading about someone's migraines on another blog, and it occurs to me that I have not had a migraine for almost a year. That never happened to me before in my life.

  10. Do you suppose cancer is a cure for migraines?


  11. Emma's going to 'knit' you a hat... woo hoo! That'll look stylin'! Thanks for all the updates. I know it sounds crazy to say it, but I absolutely love your blog - I feel connected to you. Love, Cuz...

  12. Oh, and btw, yes I do know how awful the migraine thing is - get those <@**&!> doctors to put their heads together and make sure you don't have to suffer migraines on top of this!!!!! Hope they can figure something out for you!

  13. Hey, I'd love a hat from Emma! That would be amazing.

    Many women who suffer with migraines find them gone after menopause. Even if they get them all month long. So, maybe the fact that chemo throws you into menopause helps the migraines? One can only hope. It might make cancer all worth it, honestly, if I never had another migraine.

    And, they run in families Daryl - Aunt Pat had them bad.

    I think they said if my counts are low I'll get neulasta myself - I'll have to see if that does it to me and then request neupogen. I am saving my imitrex right now - I am not taking it early on in a migraine because I want to save it for chemo.

    I'm not convinced that morphine doesn't give me migraines too - sure had them in the hospital, and they came after every shot. But, I had an anti-nausea med with each morphine shot, so who knows what caused it?


Thank you for commenting. If the post is over 14 days old, the comment will be moderated and will approved later. This is a spam prevention technique - but I love to hear from you!