Experiences with

Immunodeficiencies and defective immune system

hey. I’m nearly 2 months post laparoscopy + official diagnosis; have had the hormonal coil fitted during my op and my skin and hormones have been mental. I’ve been having random nights where I just cannot sleep, no matter how tired I am, or seemingly not very anxious, I just can’t sleep. I just lie

Hi guys! I would really appreciate some advice. I gave birth in January 2024. I know he’s my last baby so I wanted to get on a form of contraception that is long lasting that I do not have to think about. I was going back and forth between the hormonal coil and the copper coil. I had read that the copper

hey ! I had the merina coil put in during my Endo laparoscopy 6 weeks ago. I'm about to start my second period, like clockwork, since the op. The pain is so bad ! I need a little hope and reassurance that this will slowly stop ? I thought the hormonal coil was meant to stop the pain, but it’s just like

Hello ! I had my surgery + diagnosis just over two weeks ago now. I had the hormonal coil put in during my surgery as a ‘helpful measure of controlling the endo’ as obvs no cure yet. I was due on my period today, but wasn’t actually expecting it to start ? Is this normal for the hormonal coil ? I

I've got a long and varied CLL history. Long story made short for those not familiar, I was diagnosed in 2013 in my own lab when I was working as a NHS healthcare scientist in Haematology. I am. 11q del and rapidly enlarging nodes meant I started treatment with Ibrutinib in October 2015. Six years

this is the email i Got, what do you think Hello, Thank you for your interest in Biostar’s stem cell therapy for Parkinson’s disease. The treatment is recommended for patients with early to mild stages. The cell dose for treatment will be determined on the patient’s stage of the disease. This will

will be needed a stem cell transplant after my third round for Flagida Chemotherapy. Has anyone had similar?

Hey all. I don't know if I'm asking a question or just venting so bare with me.Brief history- 31yr old female. Diagnosed Jak2+ ET start of this year but going by bloodwork, I have had it since 2019. Had a BMB in the summer which showed "mild fibrosis" and "hypercellular marrow" but diagnosis remained

Hello! This is my first post. Since my teen years, I know I've had some repetitive movements of my fingers, ticks/twitches of my eyebrows and face, and counting even and odd numbers, often imagining doing so on my front teeth (sounds a bit odd, but that's what it is!) It was manageable and possibly annoying

I just wanted to let everyone know that I made my decision and I’m going through with a SCT. I have been seeing a transplant doctor at Dana Farber in Boston for about a year and he feels I’m strong enough now to have one. Now we have to find a donor and I have to start making preparations. We are shooting

Late April prior to treatment September after 4 cycles This is an update to my Diagnosed with Richters post a month or so back. I now go to MDA every 28 days and every third visit is a PET/CT scan and bone marrow along with

I have not posted in a while. About 5 years ago my blood pressure went up (180/110). I was put on over 10 different blood pressure meds. Nothing took it down. Last November I was diagnosed, via kidney biopsy, with something called MGRS (monoclonal gammopathy of renal significance). The illness

This is day +67 for me since by Bone Marrow Transplant. Happy Labor Day here in the USA. I had been cruising along with a few seemingly minor issues. GI tract at times has been an issue especially with bowel movements. As I was weened off the steroid Prednisone I have recently been put on the steroid

Hi everyone. 9+ years on (take a peek at my bio.) Stage IV pca. I'm still hormone sensitive with undetectable PSA. Living life and enjoying my time with friends and family. In November I will enter year 2 of multiple myeloma DX. Have been through induction but not needing a stem cell transplant

We've had a few members post about Richter's recently so I thought it might be time for a bit of an update on new treatments. In these reports there is not a lot of information about clonality and which mutations the patients have. Extensive pretesting for these variables as well as the clinical ones

I’ve been wanting to update my Stem Cell Transplant journey with good news and today I was going to post that, instead I’ve been told that a lot of my lymph nodes are enlarged again. It’s so disappointing to say the least, not what I was expecting as I feel quite well and most of the GVHD issues have

Hi all, just to give you an update on my journey towards my *Allogenic Stem cell Transplant. Last tests @ Addenbrookes yesterday, was a very early start as Lung function testing was @ 8.30am and it’s about 2 hour journey. Wife and I were up about 3-4am ( to be fair, couldn’t sleep anyway ) The drive

Hello Everyone, I have almost taken Rux for more than 7 years. and added interferon during the time. Actually my platelets are already very low now because of prolonged suppression of signaling pathways and the use of interferon. China site only available Rux in the markets. and I also have the ASXL1

I’ve had the Bone Marrow Transplant!!! That was actually the easiest part. 5 hours of fluids leading up to the BMT and the previous 5 days of chemo infusions (day5 was the worst) were much harder. Chemo: Fladarabine -6 thru-2 with addition of Melphalan on day-2. When you start treatment (chemo) for

Last weekend I finally had my laparoscopy on the NHS and received my diagnosis and treatment, I couldn’t have been happier. Please read my story here and get in touch if you want any advice: https://www.instagram.com/p/CzUKTp4tkwb/?igshid=anZzcWtpdjNuZmN3 But now I have been left feeling lost, my