Blastic Plasmacytoid Dendritic Cell Neoplasm

Transplant buddies indeed, I was diagnosed in May, so very similar, buddies everywhere lol, I have been keeping ok I suppose, tiredness, exhausting, and infections have been my problems, I took a HLH infection after my transplant, it killed the donor marrow completely, but for some unexplained medical reason, a bit of my own bone marrow survived the chemo, and it took over again, but my bone marrow was damaged and not working properly, ive been on boosters to keep my numbers up since, but the numbers are starting to creep up now since January, and ime slowly coming off them now, HLH is linked to iron levels, I think, the iron marker is around 400, mine was at 19,000 when they discovered it, it took them 5 weeks to find it because its not normally linked after the transplant, I have been a very complicated, unusual case, according to my consultant lol, if there was anything going to get, I got it, his words, not mine lol ime hoping now this will be the proper start to my recovery, have you been keeping well in your recovery ?? No ive had no vaccines yet as my numbers have been too low and i havent been strong enough to get them, ive a bone marrow biopsy to look forward to now in a few weeks time, that will tell how my bone marrow is working, my platletts have been between 0 and 5, I was getting transfusions twice a week, sometimes daily when in the hospital,  but thyre starting to climb now, 16 last week, so here's hoping. I me glad to hear your recovery generally gone well, and good to talk to you.

Oh gosh what a journey!! They'll be writing articles about you! I hope they continue to climb and you've turned the corner  how crazy that your own bone marrow actually survived and took over!

I hope you dont struggle too much with the bone marrow biopsy. I hate them, find them very traumatic 

It def has been a journey, that's the short version of it lol I would be here typing all night if i told you everything lol your not the first one to say about writing articles about me  it was absolutely crazy about my bone marrow, a medical mystery, I can actually manage the biopsy's ok thank god, but thyre not nice at all, iv'e only had one bad experience with them, I think this is number 4 or 5 if i remember rightly, ime hoping ime hoping iv'e turned the corner as well  iv'e my weekly clinic appointment tomorrow,  so all's crossed for tomorrow again, but then again, every visit is almost like that.

Hi all. Am still going strong(ish). I have been off meds now for 10 months and so far so good. Am still very tired but severe COPD is hugely responsible for that. My consultant says that I am an exception - I have been called far worse in my life. I still set little goals to achieve that are time framed   eg birthdays, family holidays etc. Wish you all the best .....

Hi John, i have just been reading your comments and story of your journey and its so refreshing to see a positive outcome despite the challenges which prop up along the way, but your the first person I’ve come across that’s now off meds so that’s huge. Any advice on how you got through this mentally would be really helpful. Are you able to live a somewhat ‘normal’ life now and go abroad on holidays and so forth or do you have barriers in the way? 

Hey Coolie, 

I'm now 21 months in remission, 20 months post transplant. Not on any meds and live a normal life. I am still suffering with fatigue and joint aches as i think many of us do but otherwise I'm doing really well. I'm off to a festival with family next month and have been on UK holidays twice this year so far. A positive mindset, eating well especially protein and moving are super important. Protein allows the body to rebuild and movement lessens side effects. And as the saying goes you can achieve anything you put your mind to

Hey Becki, that is so great to hear! I have just finished my first round of chemo, very intense period what was meant to be a week in hospital and day visits turned into 6weeks in hospital, infection after infection from liver to lung to fungal but on a short break between rounds now. It’s been so traumatic and I feel so helpless and want to get off this rollercoaster. I think I’m going to go ahead with round 2 but I just don’t know whether I want to go forward with the SCT if I get to that stage, I’ve heard so many horror stories and although some of which like yourself are positive I just don’t know if the risk of going through with it and having severe life limiting, changing complications versus not doing it and enjoying life for what it is before the cancer takes over again. The unknown especially with a cancer than needs SCT is just unruly, any advice you have would be great. People really don’t realise how intense and scary and lonely having cancer is until you have it yourself.

Hi Coolie oh there are certainly many bumps on this road….. as you may know I have a completely different type of very rare blood cancer…… infect at the time of my 2 Allo (donor) SCTs I had 2 rare types of Non Hodgkins Lymphomas….. one was 8 in a million and the other 4 in a million.

I talk with many people who go through SCT especially on a Lymphoma specific support platform where I help out with SCT focused zoom groups as well as being a SCT buddy……. and I would say that a good 90% of the people admit that the SCT process (both Auto and Allo) was actually not as bad as it had been made out to be by their consultants, all the literature that is out there and indeed some online forums.

Yes there will always be bumpy stories… but they are in the minority rather than the majority.

My story is rather complicated (See my story) due to having 2 type of Lymphomas……….. back in late 2013 when everything kicked off I was told that ‘the plan’ had to work as there were no other routes available apart from palliative care……… and basically I would not be helping out on this community now……

But I am coming up to 9 years out from my second Allo SCT…… I turn 69 in Nov and I doing great and living as good a life as any other 69 year old for person.

The other great encouragement for me (and often in many blood cancer) is that over the past 9 years a few new treatments have been developed for my type of blood cancer so I now have a fall back route if I ever need one.

I can relate. My journey to sct had various infections, liver reactions and sepsis which landed me in ICU with kidney failure. I was supposed to be in for 4 weeks with chemo and ended up being in for 6.5 weeks because of a fungal lung infection. It was truly a traumatic experience. I recommend counselling as you're going through things it makes such a difference to managing things. I had immunotherapy and 2 different types of chemo because 2 of them failed before we found what worked. 

There were definitely moments i wanted to give up too. But you have to take it one day at a time and it's ok to fall apart and not want to do it. The next day you get up and plow on. Giving up meant death and I've got 2 kids reliant on me. 

Recovery is individual. You just don't know how it will go. I had a very smooth recovery. I'm not as energetic as previously but i can't imagine not being here. The first year was really tough. 

It really is a lonely place. Especially when you have a rare case because you don't fit in the regular community. And you really don't know what you its like until you go through it.

There's lots of people understand the fear of going through a sct. I had 6 weeks between chemo and sct and really didnt want to go back to feeling rough. However I'm so glad i did. I'm so glad i get to do things with my kids. You have to focus on the good, the things you'll get to see and do. I wrote a massive long living list which gave me things to focus on for when i got better. And I booked a holiday for 6 months post. 

Hey Becki, if you don’t mind me asking how are you doing? How have the past few months been on your recovery journey? It seems like it’s pretty common for us all to experience bumps in the road, my first cycle was meant to be 4weeks, ended up being 7weeks due to a fungal infection like yourself, my second round was going so well I had 2 sessions left, the end was near and then I developed sepsis, a trip to ICU for a week, Drs surprised I’m still here, 3weeks in hosp and now finally home. Awaiting my latest bone marrow biopsy result and next steps. They’ve found a great SCT match I really hope i get there and it works out. How did your transplant work did you have a donor? Any tips or advice on how to go approach my next steps please share. Thanks