Its taken me a while to put this up, as I’ve been somewhat busy with a toddler, a 10 week old, a house extension and a business. Maybe I’m just being lazy though ;).
Anyway I had the results a week or two ago, and took a little bit of time to digest them. I’m not sure if I’m worrying prematurely, but theres both good and bad news (as the title said) although the bad news isn’t that bad, as yet.
So the good. My white cells are behaving themselves, and being somewhat lazy, which I can get behind. They haven’t increased by much and at this rate things are looking pretty good nearly five years on. Last time they were 28.5 (and you may remember that the usual is 4-11, but then again you may not). Now they are 31.1. The real growth in these is in a subset of the white cells, or the lymphocytes. (These should be between 1-4.8) Last time they were 22.8 and this time, a year on, 25.4.
Now considering the old prof (who has been known to exaggerate to not worry me) said that I might need treatment around 100 or so, then this is pretty good. At this rate I would need treatment in, say 2044. Now this may just be the prof being optimistic and not worrying me, and the treatment level may be lower. Additionally they made it clear that I would only need treatment when I felt rum.
So all good really on that front.
Now the not so good (or potentially bad). I have Thrombocytopenia.
The average platelets are between 150-450. Mine was 176 last year, and is now 143. Since it was 207 three years ago, and has reduced each test I am happy (well obviously not) to assume this is a trend. It is also a symptom of my condition.
For those who don’t know ‘The main function of platelets is to contribute to hemostasis: the process of stopping bleeding at the site of interrupted endothelium. They gather at the site and unless the interruption is physically too large, they plug the hole.’ Read scab.
If you have a low platelet count, you may experience:
- red, purple, or brown bruises, which are called “purpura”
- a rash with small red or purple dots called “petechiae”
- bleeding gums
- bleeding from wounds that lasts for a prolonged period or doesn’t stop on its own
- heavy menstrual bleeding
- bleeding from the rectum
- blood in the stools
- blood in the urine
Now of the list above I would be most concerned with heavy menstrual bleeding, but what do I know.
Joking aside there is nothing to worry about this year, as I am still pretty close to normal, but if the trend continues I can expect to need some form of treatment at some point. They suggest emergency treatment is a platelet count below 50,000 per microliter I would obviously look at a treatment before it became an emergency.
Your doctor may recommend that you take measures to prevent your condition from worsening. This could include:
- avoiding contact sports
- avoiding activities with a high risk of bleeding or bruising
- limiting alcohol consumption
- stopping or switching medications that affect platelets, including aspirin and ibuprofen
If your low platelet count is more severe, you may need medical treatment. This may include:
- blood or platelet transfusions
- changing medications that are causing a low platelet count
- immune globulin
- corticosteroids to block platelet antibodies
- drugs that suppress your immune system
- a splenectomy, or the surgical removal of the spleen
Now the last one is always one the table with my spleen. So its plausible this would be the only treatment, we whip it out and everything comes up roses. That said if thats not the case there are other options above. I could opportune my friends for some of their sweet sweet blood for example :). Any takers?
Other things I can do is the following diet change.
- Some of the best sources of vitamin B12 include beef, chicken liver, salmon, tuna, yogurt and turkey.
So not to worry yet, but if it drops the same again we may be having a different chat :).
In other news its five years in June since I was diagnosed, so actually thats pretty good, as its got a 75% survival rate at that point, so that’s 25% of people outlasted.
Anyway, thanks for listening and hope all is good with you! Raw data table below for the geeks :).
|Lymphocyte Count||White Blood Cell Count||Platelet Count||Red Blood Cell Count||Neurophils|
|Average||1 to 4.8||4 to 11||150-440||4.5 to 6.5||2 to 7.5|
Thank you for keeping us informed of your condition. I have learned more from you than I have from my doctor. I have never been told what is considered “slow” or “rapid” re the blood work. So happy you are hanging in there and enjoying your life, babies, home and family.
Yeah, they don’t get that much time to talk to you about it all to be fair. I did a lot of research in blood magazine and other places. How is it all going for you? What’s the prognosis?
In terms of fast and slow see below:
Splenic MZL can transform (change) into a faster-growing or more aggressive type of lymphoma. Overall, transformation happens in around 1 in 20 to 1 in 10 people with splenic MZL over the course of their disease.
Transformed splenic MZL is treated like a high-grade (fast-growing) non-Hodgkin lymphoma. The most common treatment is the chemo-immunotherapy regimen R-CHOP (rituximab, cyclophosphamide, doxorubicin [or hydroxydaunorubicin], vincristine [Oncovin®] and prednisolone).
You are where I was 5 years ago at diagnosis, platelets were under 100 and going down steady, white cells had been slowly going down for 3yrs opted for Splenectomy and with in 20 minutes after surgery my platelets were increasing, topped out at over 900 and actually caused a blood clot because my bone marrow produced so many cells so quickly. Aside from that one side effect my recovery has been good no further treatment has been required. My immunity is still on the low side so cold and flu stay longer than they should, in Canada it is not recommended to take regular antibiotics as it is in the UK as I understand. My five year mark is in April and SMZL is just a small part of life these days. Love hearing about your family and busy life.
It’s great to hear it’s only a side thing for you. I have had times like that, but sometimes it looms large. It sounds like if I drop below 100, it’s solveable. I always find it great to hear from people who are doing well. Thank you for letting me know about it 🙂
HI! Found your blog earlier this year, but been so busy dealing with this, haven’t had time to do much but visit doctors and deal with treatment. Now done with 4xs over 4 weeks Rituxan at end of Oct and waiting to find out the results at end of Jan.
There’s a smzl facebook group of just us folks!
I’m posting here, and if you want, I imagine you can mention your blog there. We’re such a small %, I want to make sure we all know about each other and our experiences.
Sounds like your numbers are mostly at least kind of holding steady. I had low platletes from the 1st Rituxan. Was given a high dose of steroids for a few days. It climbed after that back to just below normal.
Mine has been indolent looking in symptoms and test results. It’s reacted to Rituxan. However I have p53 at 15%, and c-myc at 70%. C-myc is associated with super aggressive and with Burkitts. So it’s been unclear what to do with my case.
Heya, I am a member already. I’ll share it now. :). Congratulations on finishing your treatment, I hope you get good results in Jan. Always nice to meet others in the club. It can be quite lovely at times otherwise!