Lymphoplasmacytic Lymphoma

Hi Shazbat  and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.

I don’t have Lymphoplasmacytic Lymphoma (LPL) but I was diagnosed way back in 1999 at 43 with another type (rare and incurable but treatable) of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

LPL like my type of NHL is on the rare side but we have had a number of folks come through the community with this so let's look for some of the group members to pick up on your post. You can also look through the various posts (hit the main group name and scroll down) and as always you can hit reply and ask some questions and see if the member is looking in.

You can also do a site word search so do put in Lymphoplasmacytic Lymphoma or LPL into the Search Tool near the top, hit ‘Anywhere’ and this will bring up the older posts and again hot reply to see if the members are still using the site

Always around to help more or just to chat

Hiya! Yes, my husband has the same blood cancer, and is undergoing treatment here where we live in Brittany. He's having chemo and immunotherapy, 2 half days at 3 week intervals, with anti viral tablets daily, antibiotics and an injection of Binocrit every monday, which is administered here at home by the local nurse. He's suffering a bit with nausea, but has some medication that helps a little. He's now developed a rash on both arms, and showed it yesterday to the nurse administering a platelet transfusion. She didn't seem bothered. Also a vein in his hand where a catheter was put in has turned white. But as no one flagged these things yesterday at the transfusion, we are just monitoring. He still suffers from fatigue and heart flutterings, but again the doctors didn't seem too worried. He has had a positive prognosis of being cured, with 4 more of the half days treatments then 6.months monitoring, we are hopeful he can beat it.

Hi BretonBelle! Thanks for sharing your experiences, your husband's treatment sounds more invasive than mine.... hope he's doing OK ...... I had 6 courses of DRC treatment (a combo of Chemo, antibodies & steroids) through an I.V. one 1/2 day treatment every 3 weeks (well it should've been every 3 weeks, but my pre-treatment blood tests kept showing my cell counts were too low, so it kept being deferred) Daily injections of Filgrastim for 5 days after each treatment helped a bit (boosted my white blood cells) I thought I was being brave & told the nurse I could inject myself, took the needle out of the packet at home & couldn't do it, so my partner did it! Also had chemo tablets, anti-sickness tablets, oral drops & a very strong mouthwash (prevents ulcers) I used to get asked a list of health questions before each treatment & am sure rashes was one of them - I didn't get anything like that but did have very dry itchy skin, but then I also have mild eczema! I also had problems with the canulas, the nurses had trouble getting one into a vein on the back of my hand because they were cold - they found applying a heat pack beforehand helped. The constant fatigue is annoying, the best advice I got was listen to your body - I would try & get out for a little walk each day but some days you just can't (I found I would fall asleep a lot in the afternoon/evenings during treatment) I also get the heart flutterings/skips (still do) & it can be scary. Before diagnosis I thought I had a heart problem, but the ECG was clear, was told it's my heart working that little bit extra to get the blood flowing around your body, due to low cell/platelet counts.

Take care & stay strong..... xx️xx️

Hiya Shazbat!

What good timing, had a bad few days, Peter has a very badly tolerated mouth, and sites in his lips. So bad he can't eat. I've been giving him 100mg effervescent Paracetamol, which he says helps. He also is suffering still with the painful canulas, but also the nurse's once a week visit for blood tests and a Binocrit injection he says are more painful each time. He was called in last Wednesday for a platelet transfusion, and has been going downhill since. I didn't know if it's possible to react against platelets. However, his pre arranged chemo and immunotherapy sessions due Thursday morning and Friday afternoon have now been cancelled as yesterday's blood results were not good. The specialist at Morlaix Hospital seemed surprised Peter only had platelets and not blood too. So the Thursday morning treatment has changed to an urgent blood transfusion, and his chemo has been postponed for a week as his bone marrow is too weak to handle the treatment. We've been given Amphothéricine B to help with the severe mouth infection, and Xylocaine 2% gel. I think the gel is an anaesthetic, to help dull the pain. Pete's feeling pretty miserable right now, but we soldier on! Now that's very interesting about the heat packs that helped with the canulas, I will get a heat pad and take it with us, very useful info. And the fatigue really annoys him, he gets frustrated, as he gets the fluttering heart which scares him. We have a 2 acre sloping field and he's gets sad he can't walk round it anymore as we used to go everyday with our 4 cats! Very relieved to hear your ECG was clear, so it really can be the anemia, low cell counts, he was worried he was having a heart attack! Thanks so much for replying, we don't feel so alone now we found this community.xx

Stay strong BretonBelle & Peter, you have got this!! - there is light at the end of the tunnel.... it does eventually get better.... love, Sharon & my Eric (who has been my rock) ...... xxx

Hello Bretonbelle & Peter! Hope you are both doing OK .... I had an appointment with my consultant last week & my blood counts are back to normal.... next appointment in 4 months time.... Still got the fatigue thing going on - but my consultant said I will get my confidence back & he's right, you don't realise how much of yourself you lose fighting this! Stay strong you two & everyone else out there who are fighting ...love Sharon & Eric.... xxxxx 

It's a bit of a roller coaster. Yesterday Peter went for an afternoon session in the French equivalent of outpatients for treatment. Usually the doctor comes and gets me and sees us both together, aI have more of a clear headed understanding of what's going on. But he didn't come out, then 3 hours later Peter wandered out, said nothing was happening and thought they were finished. I then rang e bell for entry and a nurse came running out and gently telling Peter off as they had had to wait for a new drug to be delivered. What a mess. We came away not knowing what he had had and feeling ait unmoored. It could have been a chemo drug, or immunotherapy or even Filgrastim (he's also got a problem with neurtrophiles, think that's called Neutropenia). All further complicated by Peter not eaking French, them obviously not speaking much English, and me who can speak French not being allowed in with him. They gave him this new drug and I still don't know what it was!

Oh dear! I can't imagine how difficult this must be in another country (the NHS have been amazing, I can't really put it into words, I worked for 16+ years without being off sick & then this ) I had the low neutrophil counts, which delayed my chemo treatments - that's when I had the daily Filgrastim self-injections -they boost the white blood cells.... hope this is what Peter has & all goes well.... I also hope that was a "one off situation" & you can go in with him in the future, due to you speaking french....take care....xxxx