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Welcome to the Forum! A thread to introduce your self and ask questions
Hello!
I am Liam, the Patients and Families Manager for Patient Services. Welcome! Thank you for joining.
This thread is in aid of anyone new to forum to introduce themselves or ask any questions you may have not been able to find the answer to.
We realise that the forum can be a little daunting to navigate when you first arrive so our Online Community Champions will be on hand to either answer that question or find a relevant thread that may contain the answer.
If you aren't new to the forum, that's OK, you are still more than welcome to post so we can get to know you!
All the best
Comments
Thanks for allowing me to join the group! I'm 69 & have ALCL ALK- . 1st time in 2018 it showed up on my skin of my thigh with mets to groin lymph nodes, & had 6 rounds CHOP chemo with remission. Showed up again in 2020 just as covid pandemic began. Mets to groin again but had radiation to back of thigh & rt groin with remission again. Had a large mass pop up in rt neck, CT showed enlarged nodes in mediastinum also. Have had 3 BV treatments, oncologist thinks I'm in remission & wants me to have a SCT consult. I'm in the US & this would be at Ochsner in New Orleans. Would like to hear any SCT pt or caregiver stories. I have 25 rescue cats & dogs & am worried about finding help to take care of them & a caregiver for myself.
Hello my daughter was diagnosed with AML halloween 2023. She is 12 years old and will be having a baby cord SCT in a week. I'd love to chat with others who are or have gone through this. My names Emily my daughter is Esmée...hi xx.
Good afternoon, Thank you for accepting me into this group. My husband's cancer has transformed from Follicular Lymphoma to high grade Diffuse large B cell lymphoma. He was diagnosed during Covid, started on RCHOP for 6 cycles, then 2 years of ritiximub maintenance which finished in January 2023, it then took a year for his immune system to recover in which time we had been isolating and shielding. Move forward to now and he has just had 1 cycle of R-GDP, expecting to have 2 more and then stem cell transplant using his own cells. We haven't been told much about the process of stem cell as we were just taking on board the news of his Cancer again. He has an appt in Birmingham May 20th, but we have no idea what happens and what the time frame is?
Hi there SJC and welcome to the forum. I'm Steve, one of the online community champions here, and had a stem cell transplant in 2013 for Acute Lymphoblastic Leukaemia. I'm sorry to hear about your husbands diagnosis after all he's been through so far.
In my case I had cells from an unrelated donor, located by Anthony Nolan. In your husbands case if he is having his own cells harvested and transplanted back he will be having what's called an Autologous transplant. There is information on the Anthony Nolan website at the link below which will give you an insight into the process.
https://www.anthonynolan.org/patients-and-families/understanding-stem-cell-transplants/what-autologous-stem-cell-transplant
Each patient is unique so it's difficult to say what the timeframe will be but the transplant team that you see on the 20th May should hopefully be able to give you an idea of the plan leading up to his transplant. The big unknown will be the time it takes to recover afterwards, some of which will be similar to the recovery he's already gone through. Everyone recovers differently, some quicker than others.
The best advice I can give is to read through the information on the website and write down a list of questions that arise to take with you to his appointment. Some of the questions will be answered as the team talk you through the process, but check your list and make sure that you ask any questions that haven't been answered.
I hope this helps, but please do use the forum to ask questions. We're here to support everyone going through transplants and everyone here understands what you're going through as we've all either been there, or are going through the process ourselves.
Best wishes,
Steve
Thank you for your support in what is a very anxious time for our family
Hi! I’ve just been recently diagnosed with Aplastic Anemia. I’m in the non-severe category at the minute but my bloods keep dropping which is scaring me. I just want to talk to someone who is going or has gone through this. Thanks :)
Welcome to the forum e_n_26, I'm one of the online community champions here on the forum.
I'm sorry to hear that you've been diagnosed with Aplastic Anemia. It's not something that I have experience of myself as I had a transplant for Acute Lymphoblastic Leukaemia.
There are a few threads relating to your condition in the forum and some people who have gone through transplants to address the condition. The easiest way to find them is to search the forum using the search box at the top of the forum page. Some of the threads go back some time so the forum members may not be so active on the forum now.
There is some information on the Anthony Nolan website on the link below, which has links to other useful information.
https://www.anthonynolan.org/patients-and-families/blood-cancers-and-blood-disorders/what-a-blood-disorder/aplastic-anaemia
Have your medical team established a treatment plan for you yet? I don't know much about the condition but it looks like some people have had transplants, though that may not be necessary in all cases and medication or transfusions might help in the short term.
I hope this helps,
Steve
Hello,
I was diagnosed with AML in December 2023 and had 2 in patient stays for chemotherapy in early 2024. It was then decided that I need a transplant and this is planned for October 2024 albeit I have not yet got a confirmed date.
I consider myself very lucky as I have not suffered much at all so far on my journey and I have a wonderful loving family supporting me. My faith also helps enormously as I have no fear over the future regardless of what happens.
My heart goes out to those poor individuals who are facing this disease alone and without support at home.
Thank you and best wishes.
Richard
I have had CLL since 2019 - had to start treatment 6 months after being diagnosed. It is very aggressive (TP53 and 17p mutations) and I have had 6 different treatment in that time including R CHOP when they thought it had transformed into Richters. It has now been diagnosed as Pro lymphocytic leukaemia and I was told this week that an allogeneic stem cell transplant is the only thing left for me to try. I have been through so much, on two occasions told that I only had months left, but I am still here and fighting! They are going through suitable donors & said transplant would be early next year. I am a pretty tough and cheerful person but this terrifies me! I really want to read other people’s experiences. Thank you.
hello everyone. My husband, 47 was diagnosed with ALL last June and after chemotherapy, had a team cell transplant. We are now at about day 130 - the first 100 days were good but the last 30 have been the toughest. He has secondary graft failure and is so tired and still can’t eat properly. A few infections along the way haven’t helped. Anyone else found the 3-6month period more difficult??
Hi there and welcome to the forum. I'm one of the online community champions and had a transplant for ALL myself 12 years ago when I was 46, so very similar to your husband. I also struggled with fatigue and appetite quite a way beyond day 100, though I can't truly remember how long. In your husbands case the infections have probably knocked him back slightly.
I don't think we realise just how long it can take to recover from a transplant, and I know I certainly didn't. There is quite a bit of emphasis on day 100 and we possibly fall into the misconception that we will be getting a lot better by then. In fact for some it is a very long path to recovery and in my case it wasn't until I started with GvHD and was prescribed steroids that my appetite came back which in turn helped me regain some energy.
In the end the GvHD slowed my recovery down due to ongoing treatments but from the start of the steroids I don't think I went backwards.
Hopefully your husbands appetite will come back and when he starts eating properly his body will rebuild it's strength. It's a case of taking it slowly and steadily, building on small steps. He will get there eventually but it does take longer for us to recover than we probably think. A transplant takes a heavy toll on the body which is a hard thing for it to recover from so it just needs time.
I hope your husband does keep moving upwards and forwards with his recovery and that his appetite returns which should help. Please keep us posted on his progress and we will support you however we can.
All the best,
Steve
Thank you Steve so much!!
I think maybe speaking to someone on the phone may be helpful. is there a counselling service do you know of at all which champions like yourself??
Hi Nec77
We offer a Telephone Emotional Support Service (TESS), which we can refer you to if you call 0303 303 0303 and choose option 3 to speak to our Helpline team here at Anthony Nolan.
All the best
Liam
Thanks Liam