Back to the same ol'...bi-weekly blood checks that always turn into blood transfusions. At least I know the drill now! Not only that, I'm becoming quite familiar with the nurses and receptionists at the clinic and they with me. It's nice to at least not feel like a number. I'm also becoming familiar with my friend Tim who helps me with admitting at the hospital (I have to go to GW for the transfusions...it's just a block from the cancer clinic). He's helped me every time. I asked him this last time if there's a rewards system I can take advantage of.
So, I was good on Monday the 15th, just a few days after ending my last does of chemo. As expected. Friday morning (the 19th), I noticed bruises and little red dots popping up on my legs. Bummer. I knew that meant I'd at least need platelets after my appointment that afternoon. Sure enough, all my counts had dropped. I was officially neutropenic again, meaning I'm prone to infection with no immune system to speak of. And, I did require platelets. Over to the hospital it was for the inevitable wait it is to get a transfusion. I finished up about 9:45 that night. The next morning I woke up with this crazy low back pain. Actually, it was so low it wasn't really my back; more like my sacrum. I was told to contact my doctor with low back pain after a transfusion, and I kept debating if I should. I decided to at least email him. Within a few minutes of sending the email, he called me and wanted me to go to the ER for a CAT scan to make sure it wasn't an abscess (that can happen, though rarely, in leukemia patients). After 4 hours at the ER, the CAT scan came back clear and I went home...though still in a lot of pain. Sometimes it would shoot up into my sternum. I realized it might be due to a shot I'd had that Monday to boost my white blood cell count. One of the side effects was bone pain as your bone marrow kicks into high gear to produce more white blood cells. I couldn't have this shot after the first round of chemo because the tumor, which originated outside the bone marrow, was composed of white blood cells. This round, since the tumor was gone, I could have it. This was a good thing because it would prevent me from being neutropenic for so long.
Sure enough, this past Monday (the 22nd) at my blood check my white blood cell count had shot up from the Friday check (at which point it was basically non-existent). Hoorah! The shot worked, and it was indeed the cause of the pain. This meant I could eat fresh foods again, stop taking all my anti's (antibiotic, antifungal, antiviral), and I had an immune system. I did require a blood transfusion and spent the rest of the day and evening at the hospital taking care of that.
As of today, Saturday the 27th, my numbers (platelets, hemoglobin, white blood) are recovering and I am done with transfusions. After about 42 hours of chemo, 3 MRI's, 2 PET scans, several CT scans, and 6 blood transfusions, I get to have my PICC line pulled next week! As for the next month or so, I'll meet with the radiation oncologist to make a plan for my radiation treatments (which I'll schedule for the end of May/first of June), as well as with a doctor at Johns Hopkins to discuss the possible role of a bone marrow transplant. Again, this is still not certain. This doctor is my oncologist's mentor and, as such, Dr. El-
Shami thinks it beneficial to meet with him. Dr. El-Shami himself doesn't feel, at this point for my case, that the benefits of a bone marrow transplant outweigh the risks. But, he does respect the opinion of his mentors at Johns Hopkins and wants us to have all the information for all parties to make the best decision.
Saturday, April 27, 2013
Wednesday, April 17, 2013
1,000 Paper Cranes
Friday, April 12, 2013
Finished with Chemo - Update
It's been a while and we thought we should post some news on how Janna is doing. The good news of recent (really, some of the best news we could have received), was that Janna's cancer is now in remission. The induction chemo she went through in March was a success. But, we still have a long road ahead. It is an enormous blessing that the cancer is now in remission, and it's another great blessing that she only had to go through one more week of treatments (just finished up this afternoon) instead of 4 more weeks over the next 4 months, which is what we previously thought she had to go through. As of this afternoon, she is done with chemo! She still has a round of radiation therapy to go through in late May/early June, but from what we understand, this will be a piece of cake compared to the side effects of chemo (easy for me to say since I'm the one that doesn't have to go through it).
There are still a few things up in the air. Bone marrow transplants are typical with most types of leukemia. Before seeing the results of the induction chemo, the doctor was preparing us for the possibility of going through a transplant. After seeing the results, he is leaning towards it not being needed, but he's consulting with his peers and mentor at Johns Hopkins to get their take. It sounds like it's a split decision, with a few believing that Janna does not need a transplant, but others believing that she should have one. Bone marrow transplants have many possible side effects, none of them easy to go through. You are essentially destroying your immune system and transplanting someone else's immune system into your body. It's a process that usually takes anywhere from 2 weeks to 2 months in the hospital, then many more months (sometimes years) of pretty intense care before you can return to normal activities. But, a transplant is often the only way someone with leukemia can survive, so the benefits often outweigh the risks. In Janna's case, her doctor (Dr. El-Shami) believes that the risks outweigh the potential benefits, since he believes the results from her current treatments show enough proof that she can and will beat it without the need of a transplant. Either way, nothing is certain, and it sounds like this is a decision that we will ultimately have to make in the coming months.
The next couple of weeks will be the same as the past couple of weeks - doctor appointments every few days to test her blood levels, with a high probability of needing transfusions to get her through the side effects of chemo. Typically, white blood cells, hemoglobin and platelets, along with a few other things in your blood that I know nothing about, go way down, leaving you susceptible to sickness and a lot of other issues. Her blood levels should start to return to normal levels sometime toward the end of April, so she should be able to have a few "normal" weeks before she has to go back in for radiation therapy. After that, we expect to have a thorough discussion on whether or not she needs to have a bone marrow transplant.
With or without a bone marrow transplant, Janna will have to go back to the oncologist once a month for the first year, then every couple of months until the end of the 3rd year. She will have MRI's once a quarter for the first year, then a couple of times a year after that. She will be considered "cured" of cancer after 3 years of not having any sign of leukemia. So while the cancer is now considered to be in remission, she is not yet cured. Dr. El-Shami told us a while ago that without the consolidation chemo (what she went through this week), there was a 100% chance of it coming back. Hopefully now that she has gone through this treatment, we can bring that down to 0%.
I'll end by sincerely thanking everyone who has kept us in their thoughts and prayers - we've been truly blessed because of them. We have friends and family of many faiths who have offered many prayers in our behalf and done many acts of service for our family (from Mormon to Catholic to Muslim to Jewish to every Christian denomination under the sun to agnostic and atheist - it's all been a blessing - and if I left anyone out, please let me know and I'll give you a shout out in another post :) ). We thank God everyday for the friends we have and the family we've been blessed with. Our ask of you is to keep the thoughts and prayers up - they're obviously working and we're nowhere near not needing them!
There are still a few things up in the air. Bone marrow transplants are typical with most types of leukemia. Before seeing the results of the induction chemo, the doctor was preparing us for the possibility of going through a transplant. After seeing the results, he is leaning towards it not being needed, but he's consulting with his peers and mentor at Johns Hopkins to get their take. It sounds like it's a split decision, with a few believing that Janna does not need a transplant, but others believing that she should have one. Bone marrow transplants have many possible side effects, none of them easy to go through. You are essentially destroying your immune system and transplanting someone else's immune system into your body. It's a process that usually takes anywhere from 2 weeks to 2 months in the hospital, then many more months (sometimes years) of pretty intense care before you can return to normal activities. But, a transplant is often the only way someone with leukemia can survive, so the benefits often outweigh the risks. In Janna's case, her doctor (Dr. El-Shami) believes that the risks outweigh the potential benefits, since he believes the results from her current treatments show enough proof that she can and will beat it without the need of a transplant. Either way, nothing is certain, and it sounds like this is a decision that we will ultimately have to make in the coming months.
The next couple of weeks will be the same as the past couple of weeks - doctor appointments every few days to test her blood levels, with a high probability of needing transfusions to get her through the side effects of chemo. Typically, white blood cells, hemoglobin and platelets, along with a few other things in your blood that I know nothing about, go way down, leaving you susceptible to sickness and a lot of other issues. Her blood levels should start to return to normal levels sometime toward the end of April, so she should be able to have a few "normal" weeks before she has to go back in for radiation therapy. After that, we expect to have a thorough discussion on whether or not she needs to have a bone marrow transplant.
With or without a bone marrow transplant, Janna will have to go back to the oncologist once a month for the first year, then every couple of months until the end of the 3rd year. She will have MRI's once a quarter for the first year, then a couple of times a year after that. She will be considered "cured" of cancer after 3 years of not having any sign of leukemia. So while the cancer is now considered to be in remission, she is not yet cured. Dr. El-Shami told us a while ago that without the consolidation chemo (what she went through this week), there was a 100% chance of it coming back. Hopefully now that she has gone through this treatment, we can bring that down to 0%.
I'll end by sincerely thanking everyone who has kept us in their thoughts and prayers - we've been truly blessed because of them. We have friends and family of many faiths who have offered many prayers in our behalf and done many acts of service for our family (from Mormon to Catholic to Muslim to Jewish to every Christian denomination under the sun to agnostic and atheist - it's all been a blessing - and if I left anyone out, please let me know and I'll give you a shout out in another post :) ). We thank God everyday for the friends we have and the family we've been blessed with. Our ask of you is to keep the thoughts and prayers up - they're obviously working and we're nowhere near not needing them!
Monday, April 1, 2013
Great News
The goal of induction chemo is to put leukemia into remission immediately. We are very grateful to say: Goal Accomplished! We met with Dr. El-Shami today and, after reviewing my PET scans and MRI from last week, he was happy to tell us there are no signs of the tumor. The cancer is in remission. We are so grateful for all the prayers that have been answered. I was supposed to do my next round of chemo this week, but he postponed it until next week as my white blood cell count still hasn't totally recovered. But, while it is still low, it is not low enough for me to be neutropenic. This means I can eat fresh fruits and vegetables and I don't have to take my prophylactic meds (antibiotic, antifungal, antiviral) for this week! We'll start it all again next week, but for this week I can feel pretty darn normal. Hoorah!
As far as future treatments, there will be radiation in May. Based on the good response to the chemo, he doesn't think I will require a bone marrow transplant. But, he does want to discuss it with his colleagues at Johns Hopkins. For now, we're thrilled with the good news and thank everyone for your service and prayers in our behalf.
As far as future treatments, there will be radiation in May. Based on the good response to the chemo, he doesn't think I will require a bone marrow transplant. But, he does want to discuss it with his colleagues at Johns Hopkins. For now, we're thrilled with the good news and thank everyone for your service and prayers in our behalf.
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