April 2011 chemo

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    Happy dance for windlass! You will make it. The next three weeks will fly by and you will be on your way to wellness. Big smile here!

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    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.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2011

    Hi Merilee, summer is a bit hit and miss here..  Best times are spring and autumn

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Mexico would be heavenly.

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    Windlass! How are you? When will you start rads? What will be your schedule for the trial? What will it entail?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    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.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2011

    Windlass, sorry to hear you are having to go through all of this.  the only advice i can give is go with your feelings - what seems right to you.  

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

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

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    LOL! Okay, I guess that question was way too complicated when I re-read it. I am not sure anyone even got what I was asking! Sorry for the chemo-brain.

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  • YaYa5
    YaYa5 Member Posts: 667
    edited November 2011

    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!

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    Windlass, your brain seems pretty good all things considered. You are really thinking about what is the best of options. You have planned a very aggressive  smack down  to your cancer so far, I would be shocked if any cancer cell still lives within you. The next thing is Rads, which my rad doc said he has a 90% success rate, which I thought was pretty good. The Herceptin and the TDN1 will be like the wind blowing away any residue or dust that tries to settle on you. You have come a long way sister, from when you first started posting. You have survived the worst if your treatments, which speaks to your strength and ability to put on your mean and tough hat when you needed it.

    What are you thinking you will do about the  herceptin vs TDM1?

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    Morning Windlass, how ya doing?

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  • profbee
    profbee Member Posts: 858
    edited November 2011

    Yeah, sorry, Windlass.  I have no idea what I'd do in your case.  You seem to believe that the TDM1 is way better than Herceptin though.  Is that right?  So, if it's so much better, maybe you want to go the way that gets you the most of that?  I'd talk it over with my doc though...2 months  off does seem like a lot. Man, I've HATED all the decisions through this whole thing...why can't the experts just make them for us?!  :)

    Thinking of  you! 

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  • Sudzinvermont
    Sudzinvermont Member Posts: 70
    edited November 2011

    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.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Thanks for all of your advice.

    I just found a clinical trial tht is examining exactly this question - whether it's safe to forego Herceptin during rads. Too bad it's in progress now and there are no results out yet. (At least not publicly available results that I can find.) I need to ask the clinical trial nurse and my oncologist to see if they can get more data on this.

    http://clinicaltrials.gov/ct2/show/NCT00769379

    Radiation Therapy With or Without Trastuzumab in Treating Women With Ductal Carcinoma In Situ Who Have Undergone Lumpectomy
    This study is currently recruiting participants.
    Verified on November 2011 by National Cancer Institute (NCI)

    First Received on October 8, 2008.   Last Updated on November 10, 2011
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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

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

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    Windlass, you are doing so well with all of this. Keep that chin up!

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  • scc218
    scc218 Member Posts: 163
    edited November 2011

    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.

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2011

    Thinking of you all today

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    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.

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    My hair is growing back well but it is at a stage where it wants to stick up in the back. I feel like it is perfect for Thanks giving , as it has moved from looking like a poodles butt to now looking like a turkey's ass. Anyone find a good way to slick hair down with out using toxic stuff?

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  • profbee
    profbee Member Posts: 858
    edited November 2011

    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!  :)

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  • profbee
    profbee Member Posts: 858
    edited November 2011

    Suzy....just stumbled on this on another thread:

    Established in 2003, the Chronic Disease Fund ensures that underinsured patients have access to the new, breakthrough medications and treatments that help patients live longer, happier, more productive lives.Chronic Disease Fund quickly became the largest copay organization in the country. In 2009, it helped more then 60,000 people get the medications they needed.http://www.gooddaysfromcdf.org/patients/process
    Other sources:
    http://www.patientresource.net/Financial_Resources.aspx
    * Co-Pay Relief Program www.copays.org, 866-512-3861
    * Health Insurance Assistance Service www.cancer.org, 800-227-2345
    * NeedyMeds (links to assistance programs) www.needymeds.org
    * Patient Services Inc. www.uneedpsi.org, 800-366-7741
    * Patient Advocate Foundation www.patientadvocate.org, 800-532 -5274
    Patient Advocate Foundation (http://www.patientadvocate.org) which provides mediation and arbitration services to patients to remove obstacles to health care, including medical debt crisis, insurance access issues and employment issues for patients with chronic, debilitating and life-threatening illnesses.CancerCare (http://www.cancercare.org) whose programs include counseling and support groups, education, financial assistance and the CancerCare Co-Payment Assistance Foundation.
    Additional Sources of Information* American Cancer Society: www.cancer.org/MLT_1x_Medical_Insurance_and_Financial_Assistance_for_the_Ca ncer_Patient.asp
    * American Society of Clinical Oncology patient Web site: www.cancer.net/patient/All +About+Cancer/Managing+the+Cost+of+Cancer +Care/Getting+Organized
    * Centers for Medicare and Medicaid Services: www.cms.hhs.gov/

    * Kaiser Family Foundation: www.kff.org/consumerguide/7350.cfm 

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  • scc218
    scc218 Member Posts: 163
    edited November 2011

    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!

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  • Sudzinvermont
    Sudzinvermont Member Posts: 70
    edited November 2011

    Hello Ladies,

    Hugs all around.....

    I thought I'd share this with you, I know I'm putting the Boob scarf on my Christmas list. Let's see if Santa can provide.

    XOX

    Sue

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  • Sarah246
    Sarah246 Member Posts: 53
    edited November 2011

    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.Smile 

    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.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited November 2011

    Hi, Sarah - glad to hear from you again - so sorry the rads were hard. I got tattoed today and "mapped" for rads. I start next week.

    I'm still insane from the Taxotere, unfortunately. Taxotere is like a designer drug specifically created to ruin my brain and trash everything I care about.

     Hugs to all.

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  • KiwiMum
    KiwiMum Member Posts: 704
    edited November 2011

    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).

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  • BernieEllen
    BernieEllen Member Posts: 2,445
    edited November 2011

    Hi everyone, i did burn quite badly from the rads but it's healing really well and all the pain has gone.  Thinking of you all.

    Maybe the few glasses of wine helped with the pain. lol 

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  • Merilee
    Merilee Member Posts: 3,047
    edited November 2011

    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

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