April 2011 chemo

Bernie

Sounds awesome, when is it summer there?

I could also arrange a meet up for our group in Mexico, I am pretty familiar with the Yucatan area.

Mexico would be heavenly.

Merilee - nice to see you this morning with that great exclamation-mark greeting. I needed it! So "hi" back!

I just finished my last Taxotere, and now I have to survive the three weeks it takes for me to stop feeling like an emotional wreck and a total failure who's mad and disappointed in myself and everyone around me. I'm considering going to "an undisclosed location" until this blows over just to save my relationships.

I will meet with my radiation onc on Nov 21. If all goes as planned, I'll start Rads on Dec 5.  That takes me through Christmas and into January, probably with Tamoxifen starting in there somewhere too.

Here's the big question I am struggling with, though. Because I am HER2+, I would normally get 17 doses of Herceptin, two of which would be delivered during Rads. However, because I am on the TDM1 trial, I get 17 doses of the (hopefully magical elixir) TDM1 instead of Herceptin.

But because TDM1 is experimental, they won't give it to me with anything else, like Taxotere or Rads, since they don't know whether it's safe. The only thing they will give me with those treatments is Herceptin, since it's a known quantity and it's the standard of care.

The catch is that every Herceptin dose I receive subtracts one experimental TDM1 dose.

I've already lost 4 of those 17 TDM1s by getting Herceptin instead. Because I chose to do the optional 4 doses of Taxotere chemo (which my onc really felt I needed), I got 4 doses of Herceptin with it... and that' how I used up 4 of my precious TDM1 doses.

Now I have Rads coming up and have a decision to make. Normally I would get two doses of Herceptin during Rads, which is the standard of care. Unfortunately, that would use up two more doses of TDM1. So rather than get a total of 17 TDM1 doses, which I thought was the original plan, I will get 11 doses of TDM1 and six doses of Herceptin, if I go that route.

ALTERNATIVELY... I could opt to skip Herceptin during Rads altogether and save those two doses to get as TDM1 later, but that would mean a two-to-three month gap in receiving any systemic therapy, and no infusions at all during Rads. There are no studies to show whether getting Herceptin with Rads improves outcomes or not (or, more importantly, whether skipping Herceptin during Rads decreases outcomes), I am completely in the dark. But it is the standard of care to get them together.

I know this is a very complicated question, and that I may not have explained it very well, but if you understand what I am saying, I would sure appreciate your initial thoughts on it.

What would you do in my place?  I promise not to hold you to it.

I agree with Bernie, follow your gut, you have done well with that so far.

i understood, windlass, but i think it's still a decision you need to make with your gut.  it's a difficult decision for sure.  frankly, i wouldn't want to go two or three months without any systemic therapy. herceptin is a sure thing for her2+ and you can still get 11 doses of the TDM1.  that feels safer to me, but again, it's what your heart and your gut tell you.  please let us know what you decide.  good luck!

Morning Windlass, how ya doing?

Wow Windlass....that does my head in.

 I had to go straight to Bernie Ellens "red wine pain killer" after reading your post.

Seems to me, like everyone else, that you are pretty intuitive. You've made it this far by trusting yourself so I agree with the ladies...go with your gut.

Onc told me I'm getting the Herceptin. So they decided.

Hang in there, Windlass!  Thinking of you!  And everybody else!

Just finished week 2 of rads -- one third done.  Yay!  So far, so good.  I was extremely tired yesterday, but I think that was more because I was swamped with work this week, and trying to juggle work and the daily rad appointments finally caught up with me.  Feeling good today.  Probably because it's Friday and I have 2 days off from rads and work!  Hope everyone has a good weekend. 

On another note -- and maybe I should post this on another thread -- does anybody know about financial assistance (compassionate need, patient assistance programs, etc) for the drugs I'll have to take for 5 years after rads is over?  I guess I need to do some research.  The 3 drugs that were suggested to me are:  Arimidex, Femara, or Aromasin.  I don't have any RX insurance.  The cheapest one is $110/month and the most expensive $508/month.  I just hate spending that kind of money on drugs.  Never even took any prescription drugs before this DX; hence, no drug insurance.

Hi, Suzy: Thanks for the well wishes. I wish I did know of some assistance, but I am drawing a blank. Private message me if you continue to draw a blank, and I'll try to help you research.

Great pic, Merilee!  I know my hair salon has all natural products they sell.  Maybe a salon nearby has some hair wax stuff that's all natural.

Suzy---I don't know of assistance, but you can try calling The American Cancer Society.  I think they can help.  

Windlass--glad you're hanging in there!  

Love the picture, Merilee!  What a riot!  Wish I had some hair advice for you.  Mine is still just patchy fuzz.  Not ready to give up the bandanas and headgear yet.  Sometimes I feel like I'll be wearing a bandana forever.

Profbee -- thank you so much for that info!  I appreciate it and will check it out.  I did find a local pharmacy over the weekend that is much more reasonable than the big chains, but it will still add up to a lot over the years, so I'm going to check out the stuff you sent for sure.  Thanks!

Hi all.

Have not been around for awhile. Finished Radiation on Friday. The pain from the burning for me has been terrible. Too bad I can't have some of the red wine BernieEllen. 

Congratulation Geocachelinda, and BernieEllen and to all of you who just finished your radiation.

Sorry Scc218, don't know anything about financial assistance. Thanks for the links Profbee.

Tomorrow is herceptin day. Hope everyone has a wonderful Thanksgiving.

I feel your pain Sarah!  I had rads #21 today. Only four to go and I am in pain.  I'm red and sore.

Next Tuesday marks the day that I am done.  No more surgery, no more chemo, no more rads. 100% done (apart from recon but that's for next year).  I will do a happy dance.

So happy for you Windlass that you are done with chemo.  Compared to chemo rads is a walk in the park (despite the burn).

Windlass! You made it, I am so thrilled even though we have never met. Funny how that works on here. You will begin to have some recovery from the taxatere while doing the rads, the worst is over. Big hug for you. You must be  one of the strongest beasts ever! I admire you for sticking with it!

SCC- will you please post what you learn from the web site that help with co-pays once you have looked. My best friend is a transplant recipient and is having trouble paying for the meds that keep the transplant from being rejected from her body. She is too sick to really research any of it herself.

For those of you just finisheing up rads, hang in there the healing from that