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Stopping the Ibrance, and a platelet transfusion today

Friday, July 17, 2015

It's been a long day today, but at the moment, I'm glad to be back in the comfort of my own home and in my pajamas.

My blood counts yesterday were not good. The hemoglobin was fine, it went up to 11.5 after the transfusion, but my platelets actually went down some more, down to 10. When I went to the cancer center for my Halotestin injection, I had to get a platelet transfusion. It wasn't bad; not much different than getting a blood transfusion, but it takes much less time, only about a half hour. And I was surprised that they were not red, like blood, but yellow, kind of the color of chicken broth.

If you've read my recent blogs, you know my feelings about the current treatment I am on, the Ibrance. I feel very strongly that I do NOT want to continue with it, even after the 7 day break. I wasn't able to talk to my oncologist today, but I asked to talk to the nurse practitioner/patient advocate. Her name is Sunday (and I was told she does not work on Mondays), but anyway, she was so nice, and so easy to talk to. I told her about my problems with the Ibrance, my misgivings about continuing with it, and the fact that my cancer has been metastatic for 8 years now and I've been on several different treatments, so this is not a decision I made lightly or out of desperation. Well, she is totally on board with whatever I want to do, and she assured me my oncologist would not be upset with me if I no longer want to do it. She said that they (meaning everyone including the medical staff) don't want any patient to feel they are being forced to do anything or do continue with a treatment they are not comfortable with. She is also going to talk to my oncologist, and that makes me feel better, because when I do see him again next month, I don't have to feel shy about broaching the subject.

I'm kind of a shy person, and not one that feels comfortable at times voicing my opinions, but I am so glad that I did today, and I feel so much better about things going forward. I did some crying while I was there too, but it felt good to feel free enough to be able to do so.

I told her I had no problem with staying on the Halotestin, as it was (before I started the Ibrance anyway) helping with my blood counts. I just feel when it comes to the Ibrance, it's not worth it to add just possibly a few more months to my life, when it's making me feel too crappy to enjoy life. It's not a cure; it's a just drug that is suppose to slow down the progression of the cancer. To me, quality of life is more important than quantity.

The social worker also wanted to talk to me, I've talked to her before and she is an awesome person also. She is going to make some calls, and I might be able to get free help with transportation for medical related things when my friends are not able to do it. She also thinks I might be able to have a home nurse come and draw my blood for my lab work every week also. But she said it takes time to get those things going, so it will probably be awhile before I hear back. But at least something can be set in place before my health gets worse.

Except for the pain issues, most of my problems right now are not from the cancer itself, but the side effects of treatments, both current ones and cumulative effects (like those with the bone marrow, which is why I'm on the Halotestin to help with the blood counts.)

My cousin took me to the cancer center today, and after that, grocery shopping. And I was a good girl and wore a mask into the store because of the low white blood count (it was .59 before the transfusion, and only went up to .61 yesterday.) I was told anything under 1.00 that I have to be very careful about germs and being around people.

But now I am glad this hard day; this hard week, actually, is behind me. Now I can just stay home until I get my CBC done again on Monday.
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Member Comments About This Blog Post
  • LADYCALICO
    Bless you. Ultimately we have to make our own decisions about what is right for us, and only you are walking in your shoes. Sending along my best wishes and prayers.
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    1815 days ago
  • JANET552
    I am so sorry you had such a hard week and I hope you can have a restful day today. I am glad you had good conversations with some people on your medical team and I hope that things can get stabilized for you.
    1815 days ago
  • no profile photo CD4212235
    I am so sorry you had such a hard week. Praying things start to work out for you. I am glad the social worker is helping you get much needed help with transportation and even having help at home instead of having to go out for your labs. Praying they get it done quickly.

    Hope you have a restful weekend.

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    1816 days ago
  • GABY1948
    We still pray here for you always....I sometimes just do not know WHAT to say. emoticon
    1816 days ago
  • BECKYANNE1
    A tough decision, but I'm glad you were able to speak up about what you want. I find many times I will rehearse what I want to say to the Dr beforehand only to keep quiet when I actually see him. Quality of life is important.
    1817 days ago
  • JANIEWWJD
    It's good that you spoke up! I pray for you everyday, my friend! May our Lord and your angels stay with you today and everyday!!!
    1817 days ago
  • BETHGILLIGAN
    I'm so glad you had the courage to speak up. Your medical team sounds great! You must be happy to be part of such a caring group of professionals. I love that they listen to you and try to follow your lead. Have a good weekend!
    1817 days ago
  • CRUISEGAL55
    Shari, I'm glad you spoke up & got some answers. I got a chuckle about the PA named Sunday & she doesn't work on Monday.
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    Try and rest up over the weekend. I'm sure you have plenty of books. Weather permitting, get out in the sunshine.
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    1817 days ago
  • LUCYCAN7
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    1817 days ago
  • PHOENIX1949
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    1817 days ago
  • CELLOPLAYER1
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    1817 days ago
  • JUDITH316
    Shari, I'm so proud of you for standing up and sharing your feelings about not wanting to continue on with the Ibrance, I agree with you about having quality to your life rather than quantity...I do hope these last 2 transfusions will help you...Have a good rest this weekend and enjoy your PJ time, Happy to hear the Nurse/Practitioner is going to talk with your Oncologist, that surely will take a lot of the weight off so when you see him next it will be easier for you to talk with him, both your Nurse/Practitioner and Counselor sound like they are so Kind and Supportive to the decisions you are wanting to make, happy they are getting things moving with having the Lab come in your home for the Blood work and getting a Volunteer driver for you when your friend's and family are not able to get you to your appointments. Sounds like things are in the works and are about to get a little easier for you my dear friend...My prayers continue for you, here's hoping you will begin to feel stronger soon and your Blood Counts come back up to more of a normal level...

    Sending you heaps of Love, Hugs & Prayers... emoticon emoticon emoticon
    1817 days ago
  • PIMPINELLAN50
    I am glad that you spoke up about your concerns about the Ibrance and that the staff you spoke to was compassionate and understanding.Hopefully you can get your blood drawn at home soon for the lab work. emoticon

    1817 days ago
  • ICECUB
    I AM SORRY YOU ARE HAVING SUCH A HARD TIME. I AM GLAD YOU TALK TO THE PATIENT ADVOCATE EXPRESSING YOUR FEELINGS. AND IT IS VERY GOOD THAT THEY LISTEN AND RESPECT YOU.
    1817 days ago
  • PICKIE98
    I think you did the right thing Shari. It is your life, your health, your body. It took courage to talk since I know you are a quiet,shy person and you DID it!

    Yes, the platelets are like egg whites in a bag,,Only 250cc so they go fast. (a unit of blood is 1,000cc) The great thing about them is, donors can give them much more often than whole blood, since they are extracted and the remainder of the person's blood is returned into their body! I learned this at the blood bank when I could still donate.(I am a proud registered bone marrow donor,yet to give and an almost 11 gallon blood donor)..I had to quit a few years back due to health issues.

    I am praying that the freebies go through the system quickly for you!! That is a true blessing.
    1817 days ago
  • MEWHENRYSMAMA
    Oh my dear friend,
    I wish I was there to hug you and just be with you for some tea and comfort!
    I can totally understand your not wanting to go back on the Ibrance...as quality
    of life is so important! I am so glad the PA/Advocate was so nice and supportive!
    What a difference that can make! I so wish people understood the power they can have over a persons day and outlook, especially in this type of a position!
    I am so glad that you spoke up, which is sometimes so hard to do! And I am glad the Social Worker was also so helpful! I think the things she suggested, especially when winter rolls around again, will be a great help!
    I will of course keep you in my thoughts and prayers, Shari!
    I hope you can relax and enjoy your weekend after accomplishing all you did today!
    Much Love and Many Hugs,
    Mary
    1817 days ago

    Comment edited on: 7/17/2015 5:52:44 PM
  • FRABBIT
    Wow! Good job standing up for yourself! Wishing you a peaceful weekend!
    1817 days ago
  • SLIMMERJESSE
    I wonder how drugs like these pass the clinical trials and make it to the public. So glad you asserted your opinion on this, Shari.
    1817 days ago
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