Day 100
Wow! It’s hard to believe it but it is 100 days since Karl’s stem cell transplant. When I think back, at some times it seems like that was half a lifetime ago. Other times it seems like it was only yesterday. Enough of that. You want to know how Karl is!
When people ask me, “How is Karl?”, lately I’ve been saying that he is good. When he got out of hospital back in December he had very little energy. He rarely left the house, and when he did things such as plow the driveway, he usually had to have a nap right after finishing. Thankfully we had very little snow! He also slept a lot back in December and early January. The man who was usually up by 6am was still in bed until after 8am, and he was back there by 8pm, even after having a mid-afternoon nap. Now all that has changed. He is back to his usual sleeping pattern, he rarely has a nap, and he is ‘out and around’. While he isn’t going to fires with the volunteer fire fighters here in Eastport, he goes to all the meetings now and he is back to his role as their training officer. He goes visiting in the mornings having a cup of tea here and a cup of coffee there, and on bad days he goes to work with me so that I won’t have to drive. In other words, he is back to most of his pre-cancer habits. Is his energy level back to pre-cancer levels? No. But by my rating he is at least at 80%, and we are happy with that.
So medically how is he? Since December he has had monthly blood work, he has had a checkup with the transplant team and his family doctor, and he has had an MRI on his kidneys (no result on this yet). Three days ago he went back to his original hemotologist, Dr. Manning. What have we learned? I’m not sure how to explain it all.
I guess I’ll start with the result of the transplant. While we were at the checkup with the transplant team we learned that only 5% of transplant patients actually end up with no Myeloma after the process. We mistakenly thought the number was higher than that. And, unfortunately Karl isn’t in that 5%. When he was first diagnosed, Karl’s monoclonal proteins, which is the main Myeloma marker, was 12.2. Normal is 0. Now Karl’s monoclonal proteins are 2.3. This was labelled by Dr. Manning as a very good partial response. And that is medical jargon for what?
Basically it means that we are now in a ‘wait until it comes back’ mode. Even if his monoclonal proteins were 0 now, that’s the place we would be because it always come back. Always. The stem cell transplant wasn’t a cure because right now there is no cure, only methods of management. So the first phase in the management is chemo to drive the Myeloma levels down. If that works and you are a candidate medically the second phase is the stem cell transplant. The next phase is maintenance, which is where Karl is. On Monday he is going back on maintenance chemo, a lower dose of Revlimid, which he will take daily. He will also take his ‘normal’ meds, which are Lovenox (blood thinner), acyclovir (anti shingles), sulfatrim (antibiotic to help prevent pneumonia), and a monthly iv for zometa (a bone builder). Added to this will be monthly blood work, and a CT scan sometime soon to check on his lungs and the lesion on his vertebrae. How long will this be Karl’s routine? We don’t know. If his Myeloma markers stablize, they will likely change the monthly blood work to bi-monthly at some point. He will stop taking sulfatrim next December, when he has his new immune system for a year. He will get the monthly zometa via iv for 1 to 2 years, depending on bone scans, levels of calcium in his blood, and kidney function. He will stay on some sort of blood thinner for as long as he takes Revlimid, although down the road he may be taken off the Lovenox injections and switched to a blood thinner that can be taken orally. We don’t know how long he will be on Revlimid. That will depend on how well he tolerates the drug, and how long it is effective. A lot of unknowns.
But there are some really great positives. All of his other blood levels are within the normal range, including his light chains (another Myeloma marker), hemoglobin, platelets, white blood cells including neutrophils, and creatinine. His liver function is normal, his kidney function is normal, and his calcium levels are normal. All good news.
When we saw Dr. Manning we asked how we would know when we have to move to the next phase. Is there a magic number for the monoclonal proteins? The answer was that there is no magic number. The next phase will occur when the Myeloma markers go up but other things happen too, like raised calcium levels, which indicates more lesions, or lowered hemoglobin, or higher light chains, or secondary cancers. And what will the next phase be? We don’t know. It could be more chemo. It could be another stem cell transplant, or it could be a treatment that is not being used currently. We have to wait and see. And, most importantly we have to live for the moment. That is the greatest lesson learned through this journey.
I don’t plan to update this blog again until something changes, so please pray and send positive vibes that you won’t see a new post in many years. Thanks to all of you for the support you have shown by reading, emailing, messaging, phoning, visiting, and stopping us in the street to ask and give a hug. It all helped!
When people ask me, “How is Karl?”, lately I’ve been saying that he is good. When he got out of hospital back in December he had very little energy. He rarely left the house, and when he did things such as plow the driveway, he usually had to have a nap right after finishing. Thankfully we had very little snow! He also slept a lot back in December and early January. The man who was usually up by 6am was still in bed until after 8am, and he was back there by 8pm, even after having a mid-afternoon nap. Now all that has changed. He is back to his usual sleeping pattern, he rarely has a nap, and he is ‘out and around’. While he isn’t going to fires with the volunteer fire fighters here in Eastport, he goes to all the meetings now and he is back to his role as their training officer. He goes visiting in the mornings having a cup of tea here and a cup of coffee there, and on bad days he goes to work with me so that I won’t have to drive. In other words, he is back to most of his pre-cancer habits. Is his energy level back to pre-cancer levels? No. But by my rating he is at least at 80%, and we are happy with that.
So medically how is he? Since December he has had monthly blood work, he has had a checkup with the transplant team and his family doctor, and he has had an MRI on his kidneys (no result on this yet). Three days ago he went back to his original hemotologist, Dr. Manning. What have we learned? I’m not sure how to explain it all.
I guess I’ll start with the result of the transplant. While we were at the checkup with the transplant team we learned that only 5% of transplant patients actually end up with no Myeloma after the process. We mistakenly thought the number was higher than that. And, unfortunately Karl isn’t in that 5%. When he was first diagnosed, Karl’s monoclonal proteins, which is the main Myeloma marker, was 12.2. Normal is 0. Now Karl’s monoclonal proteins are 2.3. This was labelled by Dr. Manning as a very good partial response. And that is medical jargon for what?
Basically it means that we are now in a ‘wait until it comes back’ mode. Even if his monoclonal proteins were 0 now, that’s the place we would be because it always come back. Always. The stem cell transplant wasn’t a cure because right now there is no cure, only methods of management. So the first phase in the management is chemo to drive the Myeloma levels down. If that works and you are a candidate medically the second phase is the stem cell transplant. The next phase is maintenance, which is where Karl is. On Monday he is going back on maintenance chemo, a lower dose of Revlimid, which he will take daily. He will also take his ‘normal’ meds, which are Lovenox (blood thinner), acyclovir (anti shingles), sulfatrim (antibiotic to help prevent pneumonia), and a monthly iv for zometa (a bone builder). Added to this will be monthly blood work, and a CT scan sometime soon to check on his lungs and the lesion on his vertebrae. How long will this be Karl’s routine? We don’t know. If his Myeloma markers stablize, they will likely change the monthly blood work to bi-monthly at some point. He will stop taking sulfatrim next December, when he has his new immune system for a year. He will get the monthly zometa via iv for 1 to 2 years, depending on bone scans, levels of calcium in his blood, and kidney function. He will stay on some sort of blood thinner for as long as he takes Revlimid, although down the road he may be taken off the Lovenox injections and switched to a blood thinner that can be taken orally. We don’t know how long he will be on Revlimid. That will depend on how well he tolerates the drug, and how long it is effective. A lot of unknowns.
But there are some really great positives. All of his other blood levels are within the normal range, including his light chains (another Myeloma marker), hemoglobin, platelets, white blood cells including neutrophils, and creatinine. His liver function is normal, his kidney function is normal, and his calcium levels are normal. All good news.
When we saw Dr. Manning we asked how we would know when we have to move to the next phase. Is there a magic number for the monoclonal proteins? The answer was that there is no magic number. The next phase will occur when the Myeloma markers go up but other things happen too, like raised calcium levels, which indicates more lesions, or lowered hemoglobin, or higher light chains, or secondary cancers. And what will the next phase be? We don’t know. It could be more chemo. It could be another stem cell transplant, or it could be a treatment that is not being used currently. We have to wait and see. And, most importantly we have to live for the moment. That is the greatest lesson learned through this journey.
I don’t plan to update this blog again until something changes, so please pray and send positive vibes that you won’t see a new post in many years. Thanks to all of you for the support you have shown by reading, emailing, messaging, phoning, visiting, and stopping us in the street to ask and give a hug. It all helped!
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