Does anyone else have BPLL? (B-cell prolymphocytic leukemia)

Hi CH2025 and a warm welcome to the Macmillan Community but so sorry to hear about your mum. 

A cancer diagnosis in the family like this can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' support challenges can help you a lot.

The Community is actually divided into dedicated Support Groups (Discussion Rooms) so can I recommend you look to join and post in our…….

Leukaemia

……. support group.

This group is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.

As for the practical and emotional challenges of supporting your mum and indeed yourself you may benefit from joining and posting in our……

Family and Friends

Carers only (if you are her caregiver)

……. support groups where you will connect with a wide range of members navigating the exact same support challenges.

To connect with a group click on the “Bold Italic Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.

When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.

You can copy and paste the text from this post into your new post.

Do get back to me if you need further help navigating the community.

Hi I wanted to respond to you since this diagnosis is so devastating initially and you won't find people with it easily, it will be a lonely diagnosis.  B-PLL is now recently moved under WHO to a placeholder category SBLPN  (splenic b-cell Leukemia lymphoma with prominent nucleoli) because it is so rare, so now info will be harder to find if you don't remember the new category name or acronym. You might instead follow CLL (chronic lymphocytic leukemia) people and discussions for sharing info on latest treatments since there's so few with B-PLL diagnosis and the CLL treatment ideas are similar to what is done for B-PLL. Health Unlocked is another site with CLL  discussion group.   Dr. Google has a very pessimistic median overall survival, don't look at that, it's based on old information and old treatments.  B-PLL is serious rare and aggressive yes.  I wasted 3 years crying over google info on survival. I started diagnosed in 2017 with over 400K WBC and had almost 10 blood transfusions to go with my initial  hospitalization  I'm still here nearly 8 years later, there's always a new medication or drug trial you can try.  Most important is find out if  your mom has TP53 marker, and if so don't do traditional chemo which will fail and make her hair fall out.  With TP53 marker make sure your doctor starts with imbruvica or venclexta or any of the other new oral pills. Keep your 2nd and 3rd treatment options in mind, you always want to have what's next in your long range treatment plan for when something doesn't work anymore. I started chemo with fludarabine (failed due to TP53 marker), then went on Imbruvica ( worked nice until it failed in 2019 resulting in hospitalization again) then went on venclexta, then added rituximab infusions 2020,  as of 2022 I test in normal range for WBC and RBC and holding steady.  I plan to try venclexta again if ever I need to start treatment again.  Your mom will be fatigued if she is treating cancer, she can only have plently of rest, the fatigue is not going away.  I wish your mom all the best in her treatment journey and many years  healthy life after treatment.