A little update….

 

I know an update has been in order but I haven’t been well enough to write. After 2 pretty good weeks in September, things started to crash again and I have pretty much spent the last 6 weeks in bed dealing with all kinds of pains, discomfort, and complete lack of energy. About one week ago, I had a draining tube inserted into my abdomen to be able to drain the ascites (fluid from liver) more often. This has been really good as I don’t have to wait to get it drained, I can do it from home and no more of the painful needles every time! So far, I have been draining 1 liter/day which sounds like a lot but my MD is not too worried. I had once again underestimated the recovery from the procedure but I am feeling a bit better now, except for this “on and off” fever which we will treat with antibiotics and make sure that there is no infection…

In my last blog post, I explained how I was after a combo of 2 drugs that had shown very promising results. I had then been put on a waitlist for a site in Denver. The last time I followed-up with them, I was told that they may lose their contrat. The research coordinator told me he would keep my name on the waitlist but he encouraged me to contact other sites as well. By that time, it was getting to be pretty obvious that I was not well enough to travel for a trial. I then asked my local oncologist if we could try to obtain the 2 drugs “off label” as they are already approved by the FDA and more and more people were successful going through that route. My doctor agreed and sent the paperwork to my insurance company. We were of course expecting a denial at first but I thought there was enough evidence to appeal the decision. However, after the initial denial, my doctor backed out. He gave me reasons like he was the chief of the oncology department and his cancer center had just bought another local cancer center and he felt like he didn’t want to put his license on the line by prescribing something outside of his scope of expertise. I offered to sign any document exonerating him if anything happened to me and even that was not an option. What really bothered me is that he has nothing else to offer me… He suggested asking my GI oncologist at Shands who is both a clinician and researcher and works within a institution that conducts research and has its own IRB. I was shocked to hear that his answer was no as well! His rationale was that with him not being part of the clinical trial, he would not have guidelines to deal with the side effects and all. After being interviewed by STAT news on how to choose clinical trials (https://www.statnews.com/2016/10/06/immunotherapy-cancer-clinical-trials/), I made some really good connections with incredible people in the pharm industry who tried to help me navigate this system. However, as the days and weeks went by, I was not getting any better and after doing a little more research, I found 8 people on my boards who had all been unsuccessful on the combo and many even had liver toxicity and with everything going on with my liver now, more stress on my liver is the last thing I need and so I had to made the difficult decision to not pursue trying the combo…

My next step is to meet with a palliative doctor to see how we could come up with a good medication regimen to help keep me more comfortable.

We have once again been very lucky to have “live-in” help. Many are asking how they can help and as of now there isn’t anything really… I am always happy to get cards but gifts/flowers make me uncomfortable. The best thing you can do is send me prayers, love, good vibes, strength & courage and all that good stuff! I don’t pick up my phone, I answer texts when I can and I haven’t looked at my FB inbox in a while… please understand if you don’t hear from me… I am also not up for visitors for now and appreciate your understanding.

Thank you for all the love and support – xox

 

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13 thoughts on “A little update….

  1. Feeling the miles between us every day. Every moment I think of you, I try to put myself in your position to attempt to understand the complexity of your situation. I can’t comprehend it and I realize that none of us can even come close. My heart is broken and I hate the feeling that I can’t do a damn thing to help you. I hate that you are in pain physically and emotionally. But please, when you get a moment, please reflect on our friendship from day 1 til today!
    We have some pretty special moments. Some serious, but most often we were just building our relationship as we shared experiences through our kids. I often wonder why we met, but I think it was just a gift. I don’t have ANY friends like you. I mean it!! You have been dealing with cancer since we met, but miraculously you have given more back to me than anybody else EVER has. Your friendship is so incredibly genuine. Thank you for trusting me with your boys when I was a complete stranger. Strangers no more…..you are a friend forever! Thank you for being ….YOU!

  2. I am praying for you and your family Rachel. Praying that a viable option opens up to provide you with what you need to actually be healed of this. Love to you and family, Rachel!

  3. When I think courage. I think Rachel. When I think of a fighter I think Rachel. You my friend are my hope. I think of you as cancers enemy! I know up close the fight. I also know up close how much strength it takes to fight. It is impossible if you can’t manage the pain or are too tired and weak. Pallative care is important. Pallative care gave us 8 months with my DH. It probably would have given us a lot longer if we had not gotten the sepsis which took everything….including his fight! Rest, prayers that you get pain relief and you are able to rise up and FIGHT again. I am a text, message or phone call away. If I could help at all. Maybe cook the family a meal… o4 hold your hand and pray.

  4. Hi Rachel, I am a medical editor at Sarah Cannon Development Innovations in Nashville, TN, a contract research organization that runs Phase I and II clinical trials for oncology drugs. I just read your story on STAT news and was so moved by your bravery. I want you to know that I think of you, and patients like you, every day while working on study protocols and informed consent forms. Thank you for sharing your story with the world. I wish you peace, love, and healing.

  5. I think of you and send you love everyday from Montreal. I wish there were good words, magic words. The only thing I want you to know is that, from near and far, you are loved. Know that I am with you. I am with you.
    I wish you peace my dear friend. I will think of you and your beauties everyday.
    With all my heart,
    Tanya

  6. I didn’t know Rachel, but felt compelled to read her blog from seeing her obituary. She certainly was a fighter and a warm and generous person. I’m so sorry for your loss and the world’s loss of such a fine person. Sue Ritchie

  7. Im not sure if rachel is alive, it sounds like we have the same oncologist at Shands…
    mcrc, mss, wild kras
    anybody out there?

  8. I found Rachel’s story while searching for answers for my friend who seems to be rowing in the same boat. I was very moved by Rachel’s persistence and determination when it must have been so difficult to hang on. My prayers are for her husband and sons: May you all feel the love of God surround you and bring you the peace that surpasses all understanding as you walk this difficult road without this wonderful lady. May you take comfort in knowing that she has and will continue to touch lives through the legacy of her journey that has now brought her a great reward.

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