Posted by: Mary Crocco | August 1, 2013

The Roundtable Conclusions

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In case you are interested, this is an informative website about CML.
http://www.cmleukemia.com/index.html

August 1, 2013

My task for July was to call my oncologist to see if my body was lacking magnesium, (to explain my leg aches.)The nurse assured me that levels for magnesium were checked regularly, but to come in to double check and she would add other things to the lab order, as we were still trying to figure out what was causing my stomach problems.
To make a long story short, magnesium levels were normal, along with everything else. The conclusion for my stomach aches – long term usage of Gleevec, my daily oral chemo drug. The doctor and his nurse practitioner reminded me that I am a pioneer of Gleevec. There is no long term data and I’ve been taking it since 2003. The doctor’s other CML patient has been taking the same drug as long as me, and lately he has been experiencing three days out of the month with projectile vomiting. So as data is collected, it looks like stomach problems may be the result of long term use of Gleevec. In other words, Living with CML.
So what do I do? If I try a different drug, or lower my dosage, I’m not willing to suffer the dire consequences – reverting to before I reached total molecular response. I could revert to another phase of CML, taking a big risk, with a bone marrow transplant lingering in the horizon. No, I am not willing to take the risk. I will live with my stomach problem, emphasis on ‘live’.
In my roundtable research, I also went back to my gastroenterologist. He agreed that I could have my endoscopy follow-up a couple of weeks early, (to see if the medication was healing my gastritis/esophagitis). The results are in on Aug. 9th. He continues to believe the cause for my stomach problem is Gleevec.
The last doctor I added to my roundtable was my primary doctor. She thinks the gastritis/esophagitis does affect my stomach. She can’t rule out Gleevec, as there is no data, but between the two, she says it’s no surprise I have stomach problems.
During my visit, the doctor could see my back/hip was still bothering me. I can’t sit or stand for long. She examined me again, this time ordering a bone density test, (it’s been years) and a hip CT scan. Results: osteoporosis of the spine and borderline hip! OMG. She suggested I’m a perfect candidate for an IV infusion (Reclast), due to my gastritis/esophagitis. It’s better than taking more pills, and she told me to check with my oncologist. She also ordered physical therapy for my back/hip.
Result: I have an IV infusion scheduled for August 2nd. Everyone agreed.
I also started p/t. The first place I went was horrible. Incompetence and apathy as I sat in the room, waiting, as the therapist was in and out dealing with other patients. It was ridiculous. As I had time to read posters and flyers in the office, I saw there was one location with a pool. I jumped right on that, having her fax my paperwork over and making an appointment.
It was a good decision. One p/t gave me his undivided attention, a back/hip massage, (which is what my doctor ordered, but the other place didn’t agree with). After that, I was sent to the pool where another p/t demonstrated appropriate exercises. This is going to work, my back already feels better, and it is proving that my own exercises I do at the athletic club were all wrong. I feel confident I will be painless soon. What a great feeling!
Before I started the p/t, I was attending writing classes on Saturday mornings. The pain from sitting and from the hard chair was unbearable. I took a pain pill before class last week to avoid pain, and I kept falling asleep in class. I’m hopeful the p/t will keep me from pain without a pill this Saturday.
Sadly, the p/t called today and said the pool heater broke. She isn’t sure when it will be up and running. I’m thinking I may go to the athletic pool and do the exercises she taught me in the meantime. Why not, right? I’ll miss the massage before hitting the water, but it’s better than not going.
A friend invited my son and me to her musician daughter’s one woman show, at her home. We planned to go, and were looking forward to it. I didn’t make it. It was the day after my endoscopy and my stomach was upset.
At least I’m managing to get through the writing classes. Only three more left.
I registered for two night classes, but only made one. They were just one night classes, but one was better than none.
So, for August, it’s an IV infusion, lots of physical therapy, results from my endoscopy, a mammogram, a pap test, and a visit to my ENT doctor. The last three days I’ve been getting dizzy. He had no openings on this side of town, and I don’t want to drive far when I’m experiencing dizziness, so next week I’m being squeezed in at his nearby office. I guess my perforated ear drum just needs to be cleaned again; at least I hope that’s all it is.

This month I will be sending my writing coach the final draft of my book! It’s time for copy editing! Now that’s exciting!

I haven’t read too much this month, but I did read and review a few books and posted on my blogs and other sites for authors.
http://www.mrc-bookreviewer.blogspot.com

My son is excited his second CD will be released on August 10th.
http://bobbymeadermusic.com/

Check out Bobby’s BIO I wrote for his site: http://bobbymeadermusic.com/portfolio/

My grandson is enjoying Gymboree and visiting lakes in Reno, NV. (I miss him)

My son said this weekend they will try camping and taking out their boat for the first time since Alex was born. He was two in June.

Thanks for reading!

Mary

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Responses

  1. Mary, I know this is going to sound insane, but I’m only passing it along because it seems to work. I too was experiencing leg aches as the result of my daily 600 mg of Gleevec dose. For me, the pains were most severe at night. At the suggestion of my hemotologist, I placed a bar of soap between my sheets. Within a few days, no more leg pains. The occasional upset stomach (or “GleevecTummy” as I’ve come to call it) is my only side effect so far.

    BTW.. THanks for the blog (I found it via your comments on Amazon.com about the The Philadelphia Chromosome book.

    Take care!

  2. Hi Chris!

    Thank you for taking the time to read my blog, and a big thanks for leaving a comment. Your suggestion is not silly at all. A while back I tried the bar of soap, but it didn’t help. Due to your reminder, I’ll try it again! I try anything and everything to alleviate the pain of cramps. And you’re right, night time is the worst.
    I’m glad your ‘Gleevec Tummy’ is occasional, and your only side effect so far. I hope it continues that way. 🙂

    Thanks for reading my review of the book, The Philadelphia Chromosone. 🙂
    Keep in touch, Chris, as I wish you well.

    Mary

  3. Mary,
    I just came across this as I was researching CML and Reclast on Google, trying to find if they are contraindicated. I, too, am on Gleevec, and it has saved my life. However, after 4 + years, I am starting to have stomach problems, some nausea, some vomiting, and lots of incidents of dry heaves (weird). I suspect it’s the Gleevec, and so does my oncologist.

    Since I take Actenol weekly for osteoporosis (BAD osteoporosis), I can’t imagine that helps my stomach. So, would you be willing to share how your Reclast session went? I have another appointment in February and am wondering if this is an option for me. I’d like to be informed before I go in. (My primary doctor retired in August, so I am temporarily stranded in that regard.)

    Thanks for any help and/or information. It is appreciated.

    Sandy

    • Hi Sandy,

      Gleevec is definitely keeping us alive, but oh, the side effects. I, too, have Osteoporosis, hence the Reclast. Luckily, Gleevec didn’t have an issue with the infusion. Sure, the next day I felt nauseous and my joints ached, but that was it. As you know, these are also side effects from Gleevec and OA, which I also suffer from, so it wasn’t a surprise.
      The reason my Primary doctor suggested Reclast was to alleviate another daily pill. Taking so many took a toll on my stomach. My oncologist agreed and set up the infusion.
      My opinion is to avoid the need for daily drugs in pill form. I don’t know about you, but I take enough pills, so I was thrilled to be offered a Reclast infusion.
      Not sure if you read my post(s) about the iron pill. Another stomach killer for me.
      Although, it seems my stomach issues are starting up again. I guess we can just expect Gleevec to continue to take a toll on our organs.
      So,my advice would be to have the Reclast infusion. One less daily pill may help. It did not interfere with my blood tests at all, so there was no negative effect.
      Please let me know how things go. You can always email if you choose. M.crocco@yahoo.com

      I hope I’ve helped, Sandy. Let me know if I can add to my reply. And please keep in touch!

      Mary 🙂

      • Thank you so much for your timely reply. This is so interesting. My primary doctor was going to set up a Reclast infusion, but when my blood test came back and I was diagnosed with CML, he changed his mind. I can understand it wouldn’t have been a good idea at that exact time, but I wish he’d mentioned it again. That said, I know it’s important to advocate for myself. I get that. So, when I see my oncologist in Feb, I will mention it.

        I LOVE the idea of one less pill. All these pills make me kinda nuts, and the more I can check some off my list, the better.

        I did read many of your other posts, and my oncologist took me off iron supplements because he felt my anemia was Gleevec induced, and the supplements wouldn’t help. In my case, he was entirely correct.

        Again, thanks for responding so quickly. I certainly didn’t expect to hear from you right away.

        I’ll let you know what I find out.

        Be well,
        Sandy

      • I always respond to a fellow CML’r immediately! We have to help one another, and I’m happy if I can help in any way.

        I always check with my oncologist before I take a new RX. I’m always thinking of ways to avoid a pill! Same as you 🙂 but whenever any of my doctors prescribe an RX, I ask my onc. I also have other docs fax my visit info to him.

        Glad you are off iron supplements! 🙂

        Mary


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