Had a follow up with my Oncologist last week, He suggested starting treatment in 3 months as Hemoglobin is 104, palettes count 150 WBC 137 lymphocytes 134, increased from 124 back in October.
My questions are:
1- how to boost my hemoglobin? If I reach 110 there will be no need to urge for treatment. I am planning a big trip in July so if treatment is soon I might not be able to travel. Tickets and reservations already done.
2- as I am 53 years old, Venetoclax is not covered for me, (10 000 cad/month) did anybody else in Ontario had this challenge? I know trillium drugs can help, top limit 2 000/month.
Appreciate a lot your advices
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Sunny-planet
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I’m in my second month of V + O. This is my second line treatment. It is going very well. In both of my treatments, for various reasons, I started a bit later than I would have liked. In the case of V + O my hemoglobin was 9.0 or 9.2, somewhere around there. In any event, the downside of starting late is your body can struggle to generate sufficient blood cells ( hemoglobin, platelets, etc. ) because treatment puts pressure on your bone marrow while it is eradicating the cancer cells. In my most recent treatment last month, I needed two units of blood before my bone marrow kicked in and started making sufficient blood cells. I think my hemoglobin dropped to 6.9 or 7.0 before it started to recover. It was at 10.9 last week and has followed a gradual upward trend since bottoming.
I appreciate the pain of having to rearrange your vacation plans but I’d start treatment as soon as my doctor told me to. Can you start with Ibrutinib or better yet Acalabrutinib? That would be a perfectly acceptable choice. Finally, it usually is impossible for a CLL patient to improve his/her hemoglobin as the cause is typically cancer cells in the bone marrow causing the problem and that situation doesn’t improve on its own.
I’m sorry to give you this advice but I’ve been through hemoglobin falling at the time of treatment twice and I don’t want you to go through this. Maybe it is possible to travel on a BTKi inhibitor? Perhaps you can start a little earlier than waiting 3-months and you may recover in time to go on your trip? Obviously, these are questions for your doctor.
I totally agree with Mark. I had the same issue. I also needed two blood transfusions when I started with O+V and it was not fun to go through the first two months of the treatment. The only thing that will probably work on your haemaglobin now is to clear your bone marrow I'm afraid. You might feel OK at the moment but things can change quite quickly even with CLL. I hope you follow your doctor's advice.
Once my hemoglobin started dropping, it went fast. I went from 10.5 to dropping under 7 in less than three months. I got a blood transfusion before starting acalabrutinib. Once I started treatment though my hemoglobin went up fast. I got up to 12 within three months.
While the question is worth asking, it's unlikely Erythropoietin will be of much use if CLL is causing the anaemia. Like Mark, healthunlocked.com/cllsuppo... Poodle2 and Alex830 have shared earlier, my haemoglobin dropped in the first month or so of starting treatment and I needed a couple of packed red blood cell transfusions to assist me on my way. My treatment start was delayed by a couple of months. Once your CLL bone marrow infiltration gets very high, all of your blood counts are all at risk of rapid collapse. My platelets bottomed out just under 30.
Sunny-Planet, I'm sorry to inform you that this is not a good state to travel in, if your bone marrow infiltration is very high, particularly if you are travelling to a different country. I actually travelled overseas just before starting treatment and I was struggling during the last part of the trip. Any over-exertion (like carrying luggage up stairs) could make ill. Your oncologist should be able to tell if your bone marrow is beginning to struggle by checking trends. My haemoglobin was between 109 and 119 in the month before I started treatment.
You can certainly ask about the value of having a bone marrow biopsy, explaining your trip plans. In your situation, I wouldn't feel confident about travelling far from home without knowing the reserve capacity of your bone marrow. I don't know how you would go without paying for it privately in Canada, though your oncologist might be able to arrange it through Medicare.
Your oncologist might have a feel for your bone marrow reserve capacity by looking at trends in your red blood cell, haemoglobin, platelet and neutrophil counts, particularly if he has seen enough CLL patients to gain that experience of how trends and final counts prior to starting treatment correspond to the need for red blood cell and platelet transfusions during treatment. It's one of the advantages of seeing a CLL specialist if at all possible, as they gain that experience.
You will be at a very high risk for infections depending on travel destinations and who's going to care for you on vacation?? JOE DOCTOR . Not good idea. Just my 2 pennies..
I take Acalabrutinib which has reduced my white count from 250 to a normal level and my red cells are also considered normal. The changes started almost immediately, I have now in my second year of treatment with thankfully no nasty side effects. Apart from taking care due to lack of immunity, I live a reasonably normal life.
I started ven & obin last August. My hemoglobin had dropped to dangerously low levels (<7) and I had about 10 transfusions in those early months. I'm not aware there's another way.
My non-doctor advice is don't start treatment too soon as it may shorten intervals between treatments, but don't wait too long as it can be a long trip back. I am on V&O and my platelets and etc. have recovered very nicely without need for transfusions. When my doctor says go, I go. Blessings.
There are lots of replies by others way better qualified than me about starting treatment & the questions to ask. I would simply add, I am also in Ontario and have just booked travel insurance. I went with Manulife because they are meant to be the better insurer if you have pre-existing conditions. What I did discover is that any condition has to have been stable within the last 3 months. If you do decide to travel, I'd strongly recommend that you confirm with your insurer, that if the worst comes to the worst that you will be covered for any medical emergencies. Sorry to be a Debbie Downer ☹️
I'm certainly not an expert in this respect, but several weeks ago, NIH told me my LDH has jumped up to 319 and that I should not be surprised if my hematologist starts me on a new treatment regimin of ventoclax along with continuing with ibrutinib after my next appointment in March. My wbc also recently jumped up from 12,000 in September 2022 to 29,000 a couple weeks ago. Fortunately for me, cost is not an issue inasmuch as I am a disabled U.S. veteran. I pray that there will be a program in Canada that will pick up more of the cost for your ventoclax treatment and that your treatment will go well for you.
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