Thursday, January 19, 2012

Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 
The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.  


But back to treatment … . On the off-weeks, though I haven’t been getting infusions, I do receive Neupogen shots to stimulate my bone marrow and get me back into the safety zone. These are very tough on my body – something that is new since transplant. It's been explained to me that the medicine may cause more pain now because my new immune system may be more sensitive to it. The days following these shots have been utterly debilitating! The bone pain is horrendous – from the large bones of my hips and back to the smallest bones in my head and jaw. Dr. Dailey and I are going to try to avoid the shots this week, rather than giving them to try to force the possibility of another treatment next week. The hope is that my counts will recover on their own with a week off and we’ll just be satisfied with that schedule. Unless I drop below 0.5, I’ll escape the injection. Yesterday was my fourth Vinblastine infusion. One more is scheduled for two weeks from yesterday. Then we check in and see whatsa happening.  

A rash flare on my ankle/foot - GVHD?
The Graft vs Host Disease of my mouth continues, as do the steroid rinses, which keep it at bay so that it's really not bothersome, just strange and kinda gross. There has also been a new, exciting development – I've been developing rashes and welts on my skin. A rush visit to my transplant doctor last week revealed it's likely that this is a manifestation of GVHD as well. He did a skin biopsy on which I am awaiting results to find out if it is an auto-immune attack process happening. If it is, then that means it is likely my sister's immune system is also going after the lymphoma and hopefully giving me the desired Graft vs Lymphoma effect, which I went through the whole allo transplant process to achieve. 

Next big marker is a PET/CT Scan on Feb. 10. If it is looking clear then we likely will do nothing - fantastic, fantastic and hopeful news! I will come off my current chemo and we'll let my donor immune system continue to do its work. My doctors and I hope that we've been working the brakes and the gas correctly by balancing immune suppressing/lymphoma eradicating chemotherapy with increased action of my new immune system. The whole idea is to stay ahead of the lymphoma so that my new immune system has the chance to be able to catch up with and go after it.

If there is some disease reduction, but still some lymphoma present, then we may go forward with the Donor Lymphocyte Infusion of some more of my sister's cells. However, we'll have to weigh what the status of my GVHD is at that time as more of her lymphocytes might push me too far into the danger zone of severe or fatal Graft vs Host Disease manifestation.

Severe flare with welts on my hip flexor/stomach area
We are trying to avoid systematic steroid therapy and all of the side effects and long-term damage that can cause, and instead going for more targeted steroid therapy. In addition to the Dexamethasone mouth rinses, I now use a topical steroid cream for when rashes and hives enflame anywhere on my body, which has been happening about once a day now. These are totally manageable and treatable side effects, effects I am grateful to live with, especially knowing these they are likely a sign that I am moving closer to a cure.

Life outside of treatment has been pretty wonderful lately. I think that the dark cloud I was in has moved past. Cancer is really only a small piece of my life right now. I have so much more to write about and look forward to telling stories of my adventures outside of all of this – more entertaining writing to come this week! It can be difficult to rehash the realities, fears and goings on of my current therapies and cancer patient status. This is why much time has lapsed between posts lately. I often want to do anything but talk or write about what I’m going through. But, then I realize the importance of doing so in order to keep a log for myself, for those that love me and worry about me, and for all those other patients out there trying to navigate this crazy cancer world. This is bigger than myself and my own avoidance and laziness. So like it or not, I’ll keep the boring treatment update blogs coming – interspersed with some more fun and (hopefully) insightful posts as well.

13 comments:

  1. so glad you are feeling better but remember that being down in the dumps sometimes is normal even for people not undergoing all that you are! so grumble and bitch here if you need to but I am so happy you are feeling better.

    Karin Diamond

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  2. Thinking about you and I just love that rock climbing photo!! So awesome!

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  3. so glad to read your blog today!!! just your more upbeat tone is more reassuring that you definitely are on the mend. withing you a wonderful year with nothing but good news and recovery.

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  4. You had me worried not hearing from you in 14 days (but whos' counting) and I wasn't the only one. You sound good, I'm so glad. Love the rock climbing pic. looks like fun; got to try that. Sending positive thoughts always.

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  5. so glad to see a positive post! (in terms of things moving forward, not your attitude, which is beyond amazing!!!) praying this works.

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  6. I think your readers agree, no matter your state of mind in dealing with an incredible challenge, we are grateful for your insights, courage and awesome gift for writing - West Hartford reader

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  7. so glad you posted again. I am sure I speak for everyone when I say i would love to read more about your life outside of cancer too. was very worried to not see a post in a few weeks but so glad there have been wonderful diversions for you too.

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  8. Keep kicking butt and climbing. As a fellow Hodger you are inspiring!!!

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  9. "There will be more of these types of adventures to come for me in 2012." Hell, yeah! Keep climbing, girl.

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  10. This may sound weird, but I too feel encouraged by your report of the rashes and welts. You said all along your sis had killer blood cells! Glad to hear your world is opening back up.....

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  11. Glad to hear from you. I understand the welps and hives. I have an immune system disorder, Behcets, and for the last year I have had them daily. At points I want to strip down and rub on the carpet like a dog. I don't know if your drs will let you take it but I've found that Zyrtec or a comparable antihistamine coupled with Zantac 150 helps. I take it twice a day. Hope you get some relief. Hugs!

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  12. so glad to hear you're having a good stretch of days. Those good days are so important! And how awesome that you even tried something new. Reminds us all that life can be not just lived, but maximized! Love!! Tiff

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  13. Karin, thank you for your courage to continue to share your journey with us. I am relieved to hear you are having some better days. I can't wait to read about your California trip! Keep fighting like only you can do! As always, sending positive energy and prays your way.

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