My mum has just been diagnosed with nodal marginal zone lymphoma. I know this is a rare non Hodgkins but if there is anyone out there with the same diagnosis I would like to get in touch.
I can see you've found a discussion on our forum and got in touch with other members who have also been diagnosed with this lymphoma which is great to see but I just wanted to let you know about a website called lymphoma association. It's a very informative site and has a section where you can find out how to get in touch with support groups in your area and has a forum just like ours where you can connect with others as well.
I hope this helps and wish your mum all the best with her treatment.
I was diagnosed with this Lymphona type a couple of months ago and have just had a second round of chemo. Its a 'rare' Lymphoma according to what I have found on the web and I can only speak to my own experience, your mothers may vary I guess depending on the stage/ progress of this lymphoma for her.
I think I mentioned some of this in my introduction to the forum so apols if I am repeating. I am a 57 year old man who was admitted to hospital with shortness of breath and fatique which and were caused by chronic anemia (low hemoglobin blood count). I didnt have any of the other symptoms which are often mentioned regarding lymphomas such as weight loss, fevers and night sweats.
As part of the diagnosis I had a CT then a PET-CT scan and a bone marrow biopsy as well as a biopsy on one of the lymph nodes which was done under general anesthetic.
In my case the lymph nodes werent/arent very notably enlarged or sore- indeed after the CT scan the doctor told me they couldnt see any problems with the lymph nodes on the scan but were referring to a more senior doctor who,fortunately, did see something!
My lymphoma is stage four as it has spread to another part of the body- in this case my bone marrow - and this is what is preventing proper production of hemoglobin /red blood cells, It hasnt affected my spleen which I understand sometimes happens.
My treatment is six rounds of monthly chemo spread over two days. I'm given Rituximab and Bendamustine infusions on day one then more Bendamustine on day two. Also I'm having regular 'topups' of blood to deal with the low blood level, there are a couple of blood tests scheduled between chemos to check on this plus if I feel my level is low the hospital are very good about seeing me the same or next day for a further test and more blood if needed.
As you may have gathered from the forum the reaction to chemo in terms of side effects varies from person to person. In my case I dont get on very well with the Rituximab and it has to be given slowly but I am fine (touch wood) with the Bendamustine. I'm also given half a dozen or so different tablets to take between and during chemos. Some are for preventing sickness/nausea which I think the Bendamustine can cause but I've been lucky with this side-effect so far which hasnt been too much of an issue.
I will have another PET-CT scan some time after my third round of chemo to see how things are progressing, also my blood levels should start going up as treatment continues so thats another measure of progress.
So for me very generally I'm tired and a bit achy a few days after chemo, then fine apart from the if blood levels get low which the hospital toping me up helps. Its unfortunatley to early to say how treatment is really progressing but hopefuly will know more by the new year.
I appreciate this may raise more questions so please, please dont hesitate to ask on the forum or more directly if you prefer. I'd of course be very interested to know more about your mums condition and how her treatment goes, I've not met anyone else in the clinic/hospital or online with this type of Lymphoma.
Thankyou for sharing your experiences so far in your journey.
I have this type of rare cancer and I am 54 ,it is in my spleen and under my arm ..currently no treatment just watch and wait . How long did it take for your cancer to become aggresive or were you unaware you had it until you got so ill ?
I have read your treatment and see that we are similar ages and so perhaps my possible future please keep me informed and good luck with your continued treatments ..
Apols for slow response for some reason I'm not being emailed when I get messages/post replies on this forum.
I was totally unaware I had this cancer until it caused anemia, I didnt have other symptoms! so dont know how long this had been present
Good news is that from the latest blood test this week I have higher red blood level than before and didnt need blood - so it seems that treatment is working after two cycles. I do generally feel better than for a long time and - although I have to take things easier than normal still I have more energy to do things now - just as well considering the season. My white blood is low but I was told thats due to the chemo and was given some injections to help with that. I'll post on here with progress but from what I gather treatment for this type of lymphoma is normally pretty sucessful.
Having said that I hope your watch and wait doesnt become more than that, thanks for the hug as well!
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