those of you that know me know that I do my best not to worry about tomorrow. However this is happening today and is making me a bit anxious about what it might mean
The last four blood tests that included blasts recorded them as 12%, 5%,13%and this week at 14%. I have had a low white cell count since I was diagnosed with ET way back in 1994. This low count has been the cause of many hospital admissions this year as repeated fevers made me a risk for neutropenic sepsis. However, this last result had my white cell count at 6 rather than its normal hovering around 2. Obviously 6 is well within normal limits but it is quite abnormal for me! My haematologist is quite laid back about it all at the moment but my fear is that MF is now progressing. I’m beginning to understand the stress that watch and wait can cause people. I’ve been on one treatment or another since 1994 so have never personally encountered this before. The positive side of my personality is telling me that watch and wait is good here as the haematology team are not jumping up and down although the registrar I spoke to today said she did understand where I was coming from!
Maybe the really knowledgeable folk on here could weigh in and help calm my nerves or suggest any questions I should be asking
Best wishes to all
Jan
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beetle
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I am not a hematologist and thus far have no experience with blasts so I would never want to give advice on this condition.
I did read some articles on mpn progression on MPN-HUB.com/ just this week. I think one of them was dated Oct 5, 2022 and it mentioned blasts. I think the information on mpn-hub.com is reviewed and pretty reliable as far as I know. If you are so inclined you could check out the articles on their website.
I suspect the best information would come from a true mpn specialist.
thanks meatloaf. I think I have done with Dr Google for a while again. I’ve just discovered ‘left shift neutrophils’ 😲. Who’d have thought! Apparently they are a sign of infection and lo and behold I’ve got them! No obvious sign of any infection at the moment though( touching wood here!). Blood is very fascinating but I think I’ll concentrate on Christmas gifts for grandchildren instead!😂
There are too many different factors for us to try to weigh in on what the blasts means for you. This is a very reasonable concern for you to discuss in detail with a MPN Specialist. This issue is actually in two parts. 1. The facts of what your blood cell numbers mean for you. 2. How to best deal with the uncertainty and stress. While we can't help you with #1, perhaps we can help with #2.
We each have to come up with our own coping strategies. I had to work on this issue myself in the last several years with the progression of my MPN from ET to PV, and four surgeries, including heart and brain surgery (brain tumor caused by another condition - NF1). There was a time period where I did not handle the stress well. I decided to never let that happen again. Here is my list.
1. Support from my family, friends, and faith community.
2. The forums I participate in (my MPN and NF Friends/Families)
3. Maintain your sense of humor and find ways to have fun no matter what.
4. Surround yourself with things that are positive and lift you up.
5. Mindfulness practices - I practice Qigong.
6. Say the Serenity Prayer every day and take it to heart!
7. Educate yourself about your condition(s). Knowledge is power.
8. Create a high-quality treatment team who you trust.
9. Advocate for yourself. Assertive patients receive higher quality care. Passive patients do not. Remember that you are in charge of your care. It is your goals, priorities and preferences that must drive your treatment. Empower yourself to deal with the condition.
I have led a long rich life and plan to continue to do so despite what happens with the MPN/NF1. Sure, there have been some challenges with the MPN/NF1 and the other related and unrelated medical issues I face. Sometimes you do, as the military folks say, have to "Embrace the Suck" or just "Suck It Up Buttercup!” However, it is not all "Suck." There is plenty of good in life to enjoy and embrace. As the prayer says, I seek the serenity to accept what I cannot change, courage to change what I can, and wisdom to know the difference.
More than anything else at this point, know that you can manage this. There are ever-more treatment options and very real hope for treatment improving in the foreseeable future. Have confidence that you will be one of many who do manages the conditions(s) successfully.
I had to copy this to a document so that I have it to assist me as I structure my life to take into account having PV. I have realized that I can still continue to have a blessed life, despite the challenges. You have been so helpful. Thank you!
so sensible as always Hunter. Positive mental attitude has got me this far and I’m relying on it to keep me going. It’s hard not to have the occasional wobble though. I have a lot to live for and concentrate on to keep the focus of my mind off me. Thanks for all your suggestions
hahaha! My boys used to play with weebles. The original ones were a slightly different design and the boys loved playing with them in the bath. They used to fill up with water which was a nightmare to get back out!! Happy memories! Yes, I’m happy to be a weeble!😊
Not always easy to be positive but Hunter gives very sound advice. If you could get more information from your consultant that might ease your worry there is nothing worse than going over things again and again. I know I am an expert at it but nothing is actually achieved. Maybe if your doctor isn’t too concerned that is a good thing
Warmest Best wishes with it all we do not travel an easy road Margo
hi. I know what you are going through. I was diagnosed in 2004 with ET and it has now progressed to MF. I don’t focus on this. Never have. I take each day as a journey. Stay positive. Best wishes xxx
I’ve googled blasts as you have most probably done but really don’t know the significance. When is your next blood test/ appointment ? Are you in treatment at the moment ? Only the haematologist can really answer your questions. Try and keep relaxed. Sending hugs
thank you. I’ve given up googling blasts as I didn’t like what it said! I’ve concluded that if my haematologist is laid back then so should I be! If they are still showing high in my next blood test in 2 weeks I will send my results to Claire Harrison who I see/speak to on an ongoing basis. In the meantime it’s the old saying “keep calm and carry on”😊😊
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