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Is anyone involved in clinical trials for ET, specifically for CALR?
Blood Cancers & Disorders | Last Active: 1 day ago | Replies (86)Comment receiving replies
@loribmt update week 2 and early week 3.
Week 2 not much more than the increase in fatigue / lack of energy. I guess to be expected due to the huge engery burden that the immune system requires. Would walk in the hospital corridor from one end and back (1/4) and was tired.
This morning had 3rd dose. A big early to really tell, but had to rest on my corridor walk this evening. As well as a much slower pace. But it has been the day after that is the worst. Unless something strange happens remainder treatments in clinic every 3 weeks for up to 5 years.
Hoping fatigue will end at some point. Is a beautiful backpacking loop in the San Juan's (most beautiful part of CO) that I want to do again. But I think Everest is out of the picture š¤£ (not that it ever really was)
Replies to "@loribmt update week 2 and early week 3. Week 2 not much more than the increase..."
@drbart86 Undergoing any type of therapy for blood cancers/conditions can be a huge energy drain on the immune system and our bodiesā¦similar to the cancer itself, I suppose. What I remember most was the debilitating level of fatigue. Reading through your comments again about the type of treatment youāre having, since it isnāt expected to impact your RBC this may be fatigue from your immune systemās initial response. If thatās the case, I would think it will level out eventually and your energy will recover. Have you discussed this with the trial team doctors/NPs?
Iām sure backpacking in the San Juanās in CO feels like a pipe dream right now. But donāt give up on those dreams. I have to share a story of my friend and fellow bone marrow transplant member here in Connect @g4c. Greg just recently celebrated his āre-birthdayā (April) after having had a allogeneic bone marrow transplant (BMT) for AML, 3 years ago. While in recovery, his goal was to be able to resume hiking some of the high peaks in Colorado. Mount Bierstadt, if I remember correctly, was the first on the bucket list. During the time of recovery, that felt like a lofty and distant goal.
Well, last summer, at 2 years post transplant, he hiked to the summit of the 14,000 ft + mountainā¦but didnāt stop there! Heās since taken on numerous other mountains and personal fitness challenges/goals!
These are amazing feats for anyone, let alone someone recovering from an aggressive form of blood cancer and a BMT. So, while you may not be able to tackle Mt Everest quite yetā¦donāt give up the dream. āŗļø Though I know right now, your goal is dodging Mack trucks on the proverbial Trial Drug highway, keep your backpack handy!
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@drbart86 We each have our own Everest! You don't need to go all the way around the world to find yours. A back-packing trip in the San Juans is a good goal.
Ginger