lymphoproliferative disorder

Hi again Alicia, in my time on the site I have not seen anyone with your type of NHL but lets see if anyone has come across it. Dr Google is not a great place to get encouragement so try and get as much information from your team so you have a clear understanding what this has for you.

Highlander ((hugs))

Hi, I agree with Mike that you need to discuss this further with your team and get them to explain in a way you understand and ask is it linked to your suppressed immune system. I have come across it as a small number of stem cell transplant patients have experienced it, but I don't sufficient to offer advice, incase elements are incorrect.

The blood journal or lymphoma.org may be good sites to start once you have that chat and if you want to find out more.

John 

Hi Alicia!

Just wanted to share my experience. I was diagnosed with lymphoproliferative disorder in Jan 2020. I had & have no symptoms so am on watch & wait. I was told that because it’s CD5 negative it’s likely to be marginal zone lymphoma but I won’t know until they take biopsies that they have no immediate plans to do. My bloods are stable. My iron levels are low likely linked to being a vegan. My lymphocyte count is 15.9 but that doesn’t mean much to me (normal is 1-4). its all so scary! 

I am also on watch & wait for a brain lesion or brain tumour since spring 2019 - another incidental find with no symptoms.

having both has affected my mood & what with shielding I’ve decided to have some counselling.

Have they told you what type of lymphoma you have? I found my 2nd telephone consultation (the first I was in shock) better as I had a list of questions to ask.

Its tough coping with something you have no control over & finding a way to mentally adjust is huge. I’m hopeful I will one day soon Find away to adjust.

Look after yourself & I’ll share anything new I hear or understand.

Jx

Sorry to hear of all this. There are lymphoproliferative disorders which are not malignant. However, they are still a concern. I do wonder though, if doctor suspects it to be a lymphoma, why not biopsy and know with surety? How may one plan for the future if the present is unknown? Another question which comes to mind is: Have they ruled out autoimmune hemolytic anemia? Just wondering. 

THANKYOU for your thoughts - I’ll look into this. You seem knowledgeable. I’ve been waking up on a morning & I thought I was having heart palpitations/flutters, but I’m thinking it’s more of a vibration sensation in my chest mainly but I can affect my arms. I notice it more in sidelying - it fluctuates I don’t get it at other times of the day - I’ve explained it to consultants I’m hoping they are not thinking I’m odd & no one has answers? Any idea what it may be? 

You are very kind. I am an originally unwilling participant in the malignancy game. As to your current symptoms, It can very well be a product of worry and anxiety over the totality of the situation - of not knowing the enemy and further, which enemy it is. Much comfort, amazingly enough, is found in identifying the source - either good or bad. Threats and worries normally come from without. It is entirely different when the enemy is within. Consultant and doctor may do as they wish, but one of their goals should be to place you at ease, knowing what precisely you are fighting.

As to nerve and nerve pain, spinal column pain, chiropractic has never had the best of reputations. However, for some years - even decades - now I have seen a trusted chiropractor and she has been of inestimable help in relieving nerve, back and neck pain. Yet, it can still be stress causing all of this, or some other cause as yet unexplained. It is good that you know when and where it occurs. The lying down bit made me think that it might be spine related.

We hate to be the squeaky wheel, as we all want to avoid the label of chronic complainer or hypochondriac, but something is causing these symptoms. Chances are that it is something minor, but again, how to know unless it is looked for?    

It’s amazing considering what you’ve been through that you are so positive. Phew! I can’t imagine for one moment what your experiences could feel like or live through. You’re certainly a survivor & one whose willing to support others. I hope I’ll find your strength when needed.

i don’t think my ‘vibration’ symptoms are bone related - it’s internal & a strange sensation - it’s likely to be anxiety. I understand people with MS experience it.  I’ve also had vibrant dreams that I remember - a rarity for me.

I fully understand your reflection on Presenting as a hypochondriac; it’s strange adjusting from being relatively healthy person to having a ticking bombs that could go off at any moment.  The key to the door, taking me into a new way of living in the now, is just ajar & I’m just getting glimpses of needing to stay positive and just to be and just to enjoy!

Gin had a part to play in this for a few weeks.
For the first time in my life I’ve been drinking on an evening alone - a few & it  certainly helped take the edge off of life. I’m over that now & generally feel better without alcohol.

I found my first counselling session where I talked & cried for an hour cathartic & I feel slightly less anxious. The first time I’ve been able to talk from my heart without burdening those I love.  I’ve yet to tell my son & family as I don’t want them worrying. That’s for another day! A few close friends/partner know. 

Best wishes 

Jazabelle