Hi,
I’m a newbie.
Last year, I was diagnosed with Lymphoplasmacytic lymphoma, stage 3B.
I recieved 5 cycles of R-CVP. I was unable to complete the 6th because i developed a wound from an infected boil that wouldn’t heal.
In September last year, i was told i was in remission.
Just after Christmas, i discovered a lump in each breast, and a swollen lymph node in my right armpit.
After the usual biopsy and Pet Ct scan, i was diagnosed with transformed Diffuse large B cell lymphoma.
I’ve just recieved my first cycle of R-CHOP, and after my second cycle I’m due to have a 2nd Pet-Ct scan to check whether i am responding to treatment.
If i am, after the chemo treatment, I’ll undergo a autologous stem cell transplant.
I wondered whether anyone has had a similar experience, either with transformed lymphoma, or a stem cell transplant?
I’m trying very hard to be positive about my prognosis.
If anyone has anything they can help me with, with regard to what to expect, i would be very grateful.
Many thanks for taking the time to read this.
Take care everybody.
Hi @Nannan a great big welcome to our forum.
I have a different blood cancer and experiences but I hope others can share their experiences.
However I often find what a lot of us share are the similar fears, thoughts, feelings and practicalities.
I think the waiting and unknow are the worst feelings.
The Blood Cancer UK support line is there for you on 0808 2080 888
Perhaps write a list of questions for your medical team
I look forward to hearing more about you so please do keep posting.
The main thing now is that you really good care of yourself.
Hello @Nannan,
Thank you for posting and sharing your experiences on the Forum.
I am sorry to read that after your first chemotherapy regime your lymphoma transformed.
Did you have any extra support through this? It can be a very worrying time. Please do ask your nurse specialist or Haematologist for psychological support around this. They can make a referral for you to see a clinical psychologist, they specialise in counselling people with a cancer diagnosis. Everyone should be offered this, but sadly people aren’t aware of this service. It can be very helpful in processing what you are going through.
I am sure others will add and share some comments to your post about transplants and their experiences, so you feel less alone.
If you are eligible for transplant, you will get chance to speak with the transplant nurses, to discuss it all - they can answer a lot of the questions you might have.
Please know that you can call our support line, at any point in time, if you want to talk anything through: 0808 2080 888.
Take care, and do keep posted about how you’re getting on.
Best wishes, Heidi.
Hi Heidi,
No, i haven’t been offered counselling , but I do have a Maggies centre i can go to.
I haven’t used their services yet, but probably will this time.
I do have a macmillan buddy, who calls me once a week.
I also had a nurse from right by you during my first diagnosis, and she has just contacted me again. She has all sorts of information at her disposal, so she might be able to help.
Thanks for replying.
Take care everybody.
I have LPL - am in remission since treatment 3 years ago - just wanted to wish you all the best with your Stem cell transplant
Aww, thanks CaroleCW,
Means a lot.
So pleased you’re still in remission
Take care
Dawn 
Hi @Nannan,
Sorry to hear your diagnosis change and the additional insecurity it has bought.
As I’ve revealed more than once on this valued forum I am in 40 years remission for Classic Hodgkin and after 10+ years monoclonal gammopathy of unknown significance (MGUS) now 1+ years in remission for Waldenstroms.
The Hodgkins was a clear acute breathless, aneamic, lumps, bumps and sweats. Industrial chemicals and radiotherapy.
But the Waldenström macroglobulinaemia (WM) a different tale. Paraprotein identified IgM. No specific diagnoses other than a low grade B cell proliferation. With my ‘previous’ my GP (a good 'un) put me immediately over to Heamo/Oncology who monitored me through Watch and Wait. No lumps, bumps or sweats just blood numbers. At the start still no specific diagnosis then the casual reference to Multiple Myloma snook in.
10 years on and anemia etc. increased, condition dropped but on the decision to treat I was diagnosed and treated as Waldenstroms macroglobulinemia (Ibrutinib and Rituximab).
I am aware that some BC’s such as LP/Waldenström macroglobulinaemia (WM) can mutate and of that I don’t know what my mind would make of it. Was it an original misdiagnosis or an unfortunate evolement?
As with those replying before me I acknowledge and very much appreciate the support of my Consultant and a great team of Research Specialist Nurses. I hope the same are there for you.
This Forum is also a great source of advice and support.
I hope your med team are on the case and here’s to a great outcome 
Iain
Hi Iain,
Thanks for your input.
I did have classic Waldenström macroglobulinaemia (WM). I had the lgm protein with the night and day sweats, anaemia, for which i had a blood transfusion, and swollen lymph nodes in neck, underarms, groin, spleen and liver.
The R-CVP knocked me for six, with constant nausea, fatigue and fainting episodes.
I lost 6 stone in weight.
It’s been a week since my first R-CHOP, and I’m already getting the nausea and fatigue symptoms, which I’m struggling to cope with.
As happened last time, i tend to feel better in the evenings.
Anybody else struggled with this?
I’m taking anti emetics, but i still can’t face eating until later in the day.
Take care everybody
@Nannan
My deepest sympathy with my understanding 
xx
Hello @Nannan
I am so sorry you are already struggling with with side effects from the R-CHOP.
Please do be brutally honest with your nurse /chemo nurses, on how you are feeling.
There are many different types of anti-sickness, and not all of them suit everyone, so you need one that works for you. Do let them know how bad it is, as they may be able to give you a stronger one prior to your IV infusions and also extra for taking at home.
It’s very important to keep on top of the nausea, as you need to stay hydrated and a stable weight for the next cycles.
Do call the nurses if your symptoms continue more than a few days, they will want to know that your side effects are not improving, so don’t struggle at home and not tell them.
Do take things easy, and call the support line if you want to chat things through.
Take care, Heidi.
Oh @Nannan how absolutely miserable for you and I certainly cannot better @Heidi_BloodCancerUK response.
Please do not suffer in silence and don’t hold back with your medical team on the severity of everything as you have put in your post, your medical team need to know everything
Be kind to yourself and please do keep posting how you get on
Thanks Heidi,
I’ll contact the nurses again, if i don’t start to feel better.
Meanwhile, take care everybody