Lymphoplasmacytic Lymphoma / Waldenstrom's Macroglobulinemia

FormerMember
FormerMember

This summer, I was diagnosed with Stage 4B Lymphoplasmacytic Lymphoma or Waldenström's Macroglobulinemia in my blood and bone marrow with multiple lymphomas in the body and in the blood and bone marrow which were found to be aggressive and required treatment right away. This was after a year challenging NHS doctors; going back and forth between GPs and ENT specialists - all who missed it, the original GP commenting that I should 'keep an eye on the lump in my neck', weight loss and the constant fatigue I was feeling, but nothing more, after all, he had them too!

In the early part of the this year I took a job where I was fortunate enough to have private healthcare and it is through private appointments that I was able to discover what I later found out to be cancer. 

The lump in my neck continued to grow and I became increasingly worried. I was referred to an ENT professor in London who immediately sent for a very comprehensive group of blood tests where one highlighted that something was wrong, giving an exceptionally high reading. Then he sent me for an FNAC - fine needle aspiration cytology test (I had already had one of these through the NHS, except that this one was also sent to Haematology for more testing). That raised a suspected low grade b-cell lymphoma which needed more investigation.

I then had a CT scan and a lumpectomy to remove the lymph nodes in my neck so the tumour could be biopsied for analysis and diagnosis. It was narrowed down to 2 cancers from a possible six. Then I had a PET scan followed by a bone marrow test and more blood tests. All in all, this confirmed my cancer diagnosis of LL and since it is aggressive, I was put on a course of chemo-immunotherapy (Rituximab and Bendamustine) which gives me the most awful nausea but thankfully my Haematologist understands that I have a phobia of being sick, and is giving me enough anti-emetics to prevent this. There have been other side effects to, like headaches, pain in my legs, extreme fatigue, constipation and hair thinning. There are days when I don't recognise myself which I find quite traumatic. I just want my life back, to be normal, and do normal things.

Knowing that my cancer is treatable but incurable is tough to take and my emotions ebb and flow at times but telling my teenage son was probably the hardest thing because I am a single parent and since his father left us when he was a baby, I have raised him completely on my own, all these years. I lost the rock who was my mother to secondary metastasis of the breast 6 years ago so this was another blow to me and my son and while I know children are meant to be resilient, I think my son internalises things despite my open approach with him. He asked me straight away and very directly, if it is terminal so I explained. I hope that I have reached him. I'm told that people with LL live for many years; I am 43 and apparently 'young' relatively speaking to have contracted this type of cancer.

I have just completed my third cycle of chemo-immunotherapy treatments. While I feel absolutely lousy and sick with terrible nausea, I am quietly confident that I am beating the evil that is invading my body and affecting my life, at least I hope I am.

I recently had another CT scan which showed there is some change in my situation. The results came back: my body is responding to the chemo-immunotherapy; I  don't have the multiple lymphomas in my body any longer, including my head. It's a huge relief. I'm told I just have to have one further cycle.

I also had more blood tests, including the paraprotein test which determines whether there is cancer present. What I don't know is what the parameters are for this blood test. I am still waiting to hear back from my doctor. In the mean time, does anyone know? Please do let me know. Many thanks in advance.

  • Hi and welcome, sorry you have joined us, the are a hand full of WM patients who post here and a couple on the lymphoma ass. web site so hopefully they will see this post and respond so you can link up with others who have the same type of lymphoma. The side effects are normal and some people on B&R don't lose all their hair. Sadly your experience is similar to about 50% of those diagnosed with lymphoma and a fine needle biopsy is of no use, the chances of hitting the right spot to get a disease sample can be slim. For sickness have they given you apprepetant? its one of the best around as it blocks the receptor that triggers being sick. 

    you may find the info you are looking for on the lymphoma ass. site or if you google the blood journal and search the range may be there, or one of the WM folk may explain hopefully

    John

    we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
  • FormerMember
    FormerMember in reply to johnr

    Thank you John. Very helpful and much appreciated.

    Yes, I was given Aprepitant at the start of my treatment after my first cycle to take home (Emend) and then for each cycle (over 2 days) I am given it intravenously. For normal day to day anti-emetic use, I have Domperidone topped up with Levopromazine when it's really bad which makes my head fuzzy, so I only take it when I really can't bear it anymore...


    Yours,

    Finding my way in the dark

  • Hi


    Sorry to hear you have joined the very special club of WMers, best to join wmuk.org.uk as very knowledgeable people on the forum.


    With WM please don't get hung up on the numbers it really doesn't work like that, some people walk around with no issues with very high igm.


    If the igm goes down and the haemoglobin goes up this is good, but again WM is not a numbers led cancer...if you did not have symptoms they would not have started treatment.


    Your experience of getting to know you have WM is very normal as its so rare, plus your age and the fact you are female.


    Sitting down with your son and telling him what you know is great and making sure he knows he can ask questions.


    Yes you will feel a bit rubbish for most of each month but that will end, get as much help as you can and don't try to carry on as before.


    The international Waldenstroms Macroglobulinemia Foundation had a conference a few months back, some great YouTube presentations if you wish to become knowledgeable (which i have found with all the people on wmuk.org.uk) Roger is the man and Dr Shirley D'Sa at UCLH


    Chris


    Hope that helps




  • Hi FormerMember and a second welcome to the Macmillan Community but as always never great to have new members. I have seen you on one of our other threads but see this as an official welcome.

    John has given you some good advice and it does look that you are well down the treatment road. Your questions is very specific and as we are not medically trained it only our cancer experience that we can use and in this case your question is way over my head ;) but it is a very good question to have in your note book of questions that you can ask your Medical Team.

    It is great to hear folk say that their treatment is doing the stuff and lets all hope that once your final treatment is completed that you will be clear.

    Always around for questions and a Highlander ((hug))

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

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  • Hi SimLuc2725

    I am currently on Bendamustine/Rituximab regime for Waldenstrom’s,I am due my 4th cycle on Mon/Tue next week. I was diagnosed 2 years ago and it is only in my bone marrow. I haven't really experience any symptoms but as my IgM paraprotein rose to 49 and I had a 60% involvement in my bone marrow it was deemed necessary to start treatment as high paraprotein levels bring with it thicker blood and the complications that can bring. I do have cold agglutinin disease, cold hands and feet which go blue.

    So you see although we share a diagnoses of WM it is affecting us very differently, it's a funny old thing no 2 are the same.

    As Rituximab gives a rise/ flare in paraprotein levels it is not given until those levels are below 40. I don't know why but the hospital I am treated at don't give it until it is below 20. Because of this I have yet to have Rituximab, although I am due to start any day as my paraprotein is now at 15.

    I have not experienced the same level of side effects that you have, maybe it's because I have been having B only.

    I think some of the side effects are from the other stuff they give you to counteract the side efffects of B&R. Antisickness can cause constipation.

    You don't say if you have had a bone marrow biopsy? I’m not sure but think this is the only way you can say if it's in the bone marrow.

    I myself don't know what the parameters are for IgM paraprotein I assume the lower the better.

    There is a sort of guide which determines response , good , partial etc. I found a very good guideline to Waldenstrom’s on the nccn.org site under patient guidelines for WM.

    Chris has also mentioned the WMUK site but there is also the IWMF site which is the international site, it has very good information mostly from the US, but very good.

    I have learned that the full effects of B&R are not known until some months after treatment has finished so you may find that things continue to improve after completion. I will have another bone marrow biopsy to see how much of the cancer remains. 

    It is true that they don't  just go by numbers but they obviously act as some indication of how things are.

    It also appears that each consultant has a different approach although there are guidelines as to when treatment should start.

    I feel happier with gaining as much knowledge as I can and always have a discussion with my consultant as to the best way to go. But it is an individual thing, others don't want to know the details.

    I hope this has been of some use to you.

    Best of luck

    Ann



  • FormerMember
    FormerMember

    Hi,

    Just read your post and wanted to reply.

    I was diagnosed with WM back in 2012 after over a year of tests and investigations. I have had Rituximab and Bendamustine back in 2012/2013, so know of some of the side effects you have been through although my hair didn’t noticeably change. 

    I also had pamidronate for a while 18 months just to strengthen my bones although bones were generally ok. In April 2013 I was told that paraprotein levels were so small they were not measurable. So far 4.5 years on and still not needing further treatment. So you are being given the good stuff to give yourself a good chance of recovery.

    What I would say is listen to your body and rest when needed which could be often with the fatigue from the condition and the treatment.

    There is life after treatment and as long as you are careful you should be able to have a normal life. I know that at some point I may need treatment again but you just deal with that when it happens and not let it weigh on your mind.

    Keep going and by all means contact us here as talking to others either in same position or who have been there can help when things seem difficult. Hang on in there, you can and will beat this!!

  • Hi, I've joined this group because I want to be in contact with other people who understand what it's like to have WM. From what I've read it's a very rare form of non-Hodgkin's Lymphoma and, since I'm female, even more rare.  I live on my own and, although I have a few friends who've had cancer themselves and they're sympathetic, it's not easy for them to understand - especially since most have had breast cancer and one has had ovarian cancer, which are totally different from what I have so I can't really discuss it with anyone.

    I was diagnosed with low-grade WM on 19th January this year.  I was experiencing a collection of weird, but very vague symptoms which I put down to the stress of moving house in the hot summer last year. However, when the weather became cooler and I still got hot flushes (I'm 67 so too old for them!) I knew there was something wrong because I usually feel the cold badly so I decided to go to my doctor, who sent me for blood tests.  When I went back to him for the results he told me that there was an "elevated level" of protein in my blood and he was referring me to the haematologist. She arranged a CT scan and a bone marrow biopsy, which I had just before Christmas, and an appointment to see her in January when she told me that the scan was clear but the biopsy had revealed that I've got WM.  I'd never heard of it. She gave me a booklet published by the Lymphoma Association and I googled it when I returned home. Sure enough, it listed the symptoms I've been having: hot flushes (though I'm not sweating in this cold weather, just going scarlet-faced and extremely hot all over), chronic fatigue, bleeding gums (my dentist scolded me because of that when I went for my appointment last September and told me I wasn't brushing my teeth properly), burning mouth and tongue, pins and needles all over my body, itching, breathlessness, sore lymph nodes (especially armpits and under my jaw) and - the worst thing for me - mental confusion. 

    I've just been reading the posts in this thread and that one of the contributors has said that they feel as though they're inventing it when they tell other people. That's how I feel. It's not quite "real" and, as I said earlier in this post, it's especially evident when I talk to friends who've had other and more obvious types of cancer. It doesn't help my case that I'm not breaking down in floods of tears or running around screaming "oh my God, I've got cancer!" or "why me?" as many people seem to expect me to do.  I don't see that will do any good and will make me feel worse. I think that the best thing for me is to learn as much as possible about it, so I've volunteered for a clinical trial and if I'm accepted will be part of the South Coast Observational Study of sufferers from various types of non-Hodgkin's Lymphoma which is due to start in a couple of months.

    I'm currently on a "wait and see" regime so I'm going for blood tests every 3 months to monitor my condition, but nothing else unless and until it gets worse. 

    I look forward to being part of this group. From what I've read you all seem to be very nice people.

  • Hi  and welcome to the Online Community but sorry you need to find support.

    I do like your last line of your post 'From what I've read you all seem to be very nice people' :) 

    As you will have seen a few folks on this forum have WM and you will see some great information and encouraging stories. I have another type of rare NHL and yes lost of folks, even those who have cancers like Breast and Prostrate can at times think that Blood Cancer is not that bad and have been told me a few times 'Ahh, if you are going to get cancer then Lymphona is the best one to get'!!!! 

    But what they don't appreciate is rare blood cancers don't have the money and time given to research the way forward for folks who find themselves in this position.

    Being on Watch and Wait takes some time to get your head round but your team are seeing this as the best way forward for you at this time and when and if required they can use some of the treatments available.

    I am sure that some of the WM folks will be along to say welcome. Keep posting and asking your questions as we are arround to help each other on our journeys.

    When you get a minute it would be good to put some info into your profile as it does help other who come onto the site but don't feel in a position to ask questions.

    Mike - Thehighlander

    It always seems impossible until its done - Nelson Mandela

    Community Champion Badge

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  • Hi Sunflowers3

    I'm a fellow WMer, going through treatment at the moment.

    If you may have seen a post from me further up the page. I will get back to you later on but in the meantime check out the IWMF website.

    there is loads of information on there. Look through the menu on the right.

    They do have a forum site which you will find is mostly WMers form the US and Canada but they do respondand their newssheet is really informative.

    If you go onto the Lymphoma Association forum and look under Waldenstrom’s then Newcomer not all bad news, you will see the posts that I have been sharing with Lynnetheking who is currently having treatment and who also lives on her own.

    I promise I will get back today.


    All best Ann


    Bye the way what is your IgM paraprotein?

  • Hi Sunflower


    Yes my dentist used to do the same! As you have looked at the threads i hope you have picked up wmuk.org.uk as a great support and information.


    Also the International Waldenstroms Macroglobulinemia Foundation in the U.S. is a fantastic source of information, the last conference 2017 is on YouTube and very informative.


    I am treated in Surrey but also see Dr S D'Sa at UCLH, she has a Waldenstroms Macroglobulinemia clinic and i would encourage your consultant to make the UCLH part of your medical team. Its based at the University College Hospital Macmillan Cancer Centre near Euston.


    I suppose to the people who think you have a fake kind of cancer, i would say it's incurable, wait and worry :-) is even worse! and i have to see Heamatologist as my cancer is very complex and doesn't effect a few areas, its my whole body.


    As a orphan cancer funding and our treatment options are often under threat, which adds to the worry.


    The good news it's a indolent cancer and the way it behaves means you shouldn't get any last minute shocks. 


    My symptoms included, eyesight, hearing, night sweats, nose bleeds, fatigue and confusion.


    I finished treatment in March 2017 having found out in August 2016 that i had signed up to the WM club.


    Chris