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Case Studies: the Patient Tales: scroll down for more!
We'd like more stories to add to these on the website and to have for our 'patient tales' wall . If you can help the project, simply email us.
If you are newly diagnosed or not yet treated, please note that these are mainly complex, long term Patient Tales, so do not get unduly worried or treat them as typical!
Roger's Story- Salvage by Autologous Stem Cell Transplant
I was diagnosed at 53 (9 years ago) getting breathless learning to tap dance. My wife Alison noticed night sweats, tiredness more dimwittedness than usual and thought it might be MS. I then came down with shingles and pleurisy. My doctor said I was depressed and prescribed happy pills, but a blood test produced the diagnosis of WM at a local leukaemia centre. 5 years was quoted as survival time! This necessitated a strong cup of tea in a nearby cafe.
The breathlessness was due to thick blood due to excess IgM at 50 and viscosity of 5.4- some 4 times normal, and explained the lack of brain power. The tiredness being put down to anaemia with a haemoglobin of 9. Luckily I had none of the eye damage that sometimes accompanies hyperviscosity.
Initial treatment was plasmapheresis to lower the IgM - some 12, 2.5 hr sessions in all at 3-5 week intervals at the Bristol Blood Transfusion Centre which provided instant relief. I was also prescribed a course of Chlorambucil, a well-tried alkylating agent which I followed for a week.
The Second Opinion -With the help of the IWMF website and friends working for Cancer Research UK we sought a second opinion (everyone is entitled to one on the NHS) and found the Myeloma and WM clinics run at University College Hospital, London. Although 2 hour travel was a pain, it was worth it to talk to specialists who had seen dozens of patients, seemed to have a long term plan and actually contributed to research in WM.
New Treatment- was 2 cycles of 2CdA (Cladribine, similar action to Fludabarine) intraveniously as a day patient at monthly intervals. This gave me a partial remission for 2 years, but then relapsed as my blood counts went south and IgM rose.
The Next chemo was 6 cycles of R-CHP, a mixture of Rituximab and conventionall chemo (not CHOP, as I had considerable peripheral neuropathy in my feet) at monthly intervals in the chemo bay at UCH, which I found more psychologically challenging than physical. During this time I also sorted problems caused by sinus infections and acid stomach reflux. The counts all slowly recovered, and I had a good partial remission for another 5 years. During this time we attended the excellent IWMF Educational Forums in the USA, International Forums in Stockholm and Venice and the London Support Group meetings. All through the treatments we kept a spreadsheet of blood tests and treatment so I could compare symptoms with the test results. I continued to work and visited places such as Antarctica as a travel photographer, with no problems.
In Autumn 2010 red and white cell counts declined again and tiredness took over. In January 2011 we decided to go for an autologous stem cell transplant. The first step was to have a PICC line inserted in my Arm (Peripherally Inserted Central Catheter). This was used to infuse the chemo and also if I needed intravenious antibiotics. Chemo consisted of two bouts of R-ESHAP chemotherapy to reduce the disease in the Ambulatory Care unit at UCH (you have chemo in the mornings for 4 days and stay in a nearby hotel with the hospital on call). Once recovered, the next step was removal of my own stem cells, which proved to be a challenge at 61. I had two sessions with two varieties of treatment which encourage the stem cells to migrate into the bloodstream where they are centrifuged out. I just managed to produce the required 2 million cells per litre, which were then frozen.
We put aside most of August 2011 for the transplant. You are treated with a very high dose LEAM or BEAM chemotherapy which destroys the bone marrow, and your own stem cells are put back in time to rescue you ('engraft') before you peg out. You start in Ambulatory Care, but then admitted to a specialist ward with positive pressure rooms to avoid infection. I was lucky and caught nothing serious and was out in 12 days after having my cells back - some three weeks in total, and am now back at work feeling very good with normal blood counts. For more graphic details, have a look at Phil Manning's blog linked to this site. Hopefully this treatment will give me a decent remission until something better comes along. My next appointment will see me having a bone marrow sample taken in 6 months to see if the disease is still present. The last effect to disappear (in time for Christmas) was that all red wine tasted like vinegar. My IgM is 1.5
Remains of the hair come off post-transplant!
Sheila's Tale : Rescued by Velcade
I was diagnosed in 1995 from having pneumonia. WM confirmed by bone marrow biopsy. On Watch and Wait until 2004 when I became anaemic and started to lose weight.
First Treatment- oral Chlorambucil.This was effective until 2006 and I then had a second course. This was effective for a short time only. I didn’t suffer many side effects except fatigue.
I started on Fludarabine early in 2007. I immediately had Shingles. This was controlled with massive doses of Aciclovir. I had 6 cycles of Fludarabine. Very quickly my haemoglobin level dropped on a sustained and regular basis which meant constant blood transfusions. I reacted badly to transfusions, frequently going into toxic shock. This was because I produced antibodies so the blood that had been matched no longer matched. Sometimes it took three days to get matched blood from the rare blood unit at Sheffield. Eventually, the consultant said I should have washed blood as this meant there was little to which to react. This worked for a while so long as I was transfused very slowly. Before each transfusion I was given ‘cover’ to minimise rejection.
In April 2008 I had 4 cycles of Rituximab, plus transfusion and to aid my haemoglobin count and to try to cut down on transfusions, early in 2009 I was started on Erythropoetin which I injected into my stomach (Eprex). This helped a bit but I still had to have regular transfusions and by May 2009 I was reacting even to washed blood. In 2010, because nothing seemed to be working and the transfusion situation was dire, I was started on large doses of steroids. (Prednisolone). By mid 2010 I started to haemolyse (breaking down red cells) in my own blood. Eprex was increased and the steroids kept at a high level. This didn’t do much so a month later, very jaundiced, as I was still haemolysing at a great rate, I was given Cyclosporin (Neoral), which is an anti-rejection drug given to liver transplant patient was, along with steroids and Eprex. By November 2010 it was clear nothing was working. Everything I was taking was having little effect and my Hb level dropped on a daily basis.
In January 2011 it was decided I should have the RCVP regime. (Rituximab, Cyclophosaphamide, Vincristine and Prednisolone). It had heavy side effects. The Vincristine not only meant hair loss, but it paralysed my bowel which was a nightmare and I was hospitalised in case I needed surgery. Fortunately not! Vincristine had to be omitted for the 2nd cycle and reduced for the rest. After scan and bone marrow biopsy the consultant told me nothing had worked. The prognosis was poor. I was told that there was a multiple myeloma drug Bortezomib (Velcade) that had been tested for WM in Canada, and for someone who fitted the criteria it could be available on a specially funded NHS programme if I was accepted. The main criteria was that nothing else had worked and it was ‘last chance saloon’.
Bortezomib (Velcade). I have had 5 cycles of this and it’s working a treat at the moment. (Jan 2012). Blood count staying stable and lymph nodes in abdomen and chest reduced in size. Bone marrow holding up well. I can have 8 cycles of Velcade but no more as it’s so toxic. For sheer excellence in absolutely every way, the Medical Day Unit (Oncology) at Southport and Formby Hospital, in my view, must rate among the best.
I worked as a conveyancing assistant until I started Velcade in 2011(I am now 68), but because of the time the cycles take up I had to stop. However, I keep in touch and hope to get back to work. I live in hope!!! I also sing with Rainford Ladies Choir, practising once and sometimes twice a week. We sing every type of song and do concerts. It's great fun, but hard work as we learn new songs all the time and sometimes its four part. I'm an Anglican and write scripts for a number of things at Christmas and during the year - and for the church magazine. It's very interesting as sometimes I interview people. To keep in touch with the world generally most days I go into St Helens on the bus - and the small bus I catch is like a travelling club as we all use it most days. If anyone's missing for a day or two there is a big inquest when the wanderer returns. A full explanation is required and is given in the half hour bus journey. Because I get a lot of fatigue and peripheral neuropathy problems the bus is a good way of getting about as it stops almost outside my door. Also, my bus companions are mostly the halt and the lame, like me, so I know someone will pick me up if I keel over!
Ulrike's Journey: A Rituximab Success Story
Diagnosis: My WM story began in early January 2009 when, at the age of 67, I discovered a lump under my arm. Why hadn't I noticed it before? A phone call to the surgery and "the doctor will see you this afternoon" was the reply. The GP felt the lump and said there was another, larger one, in the other armpit. I was sent for blood tests and a week later got the results. Apparently my blood counts were completely haywire so I was referred to the Haematology Dept at Hemel Hempstead Hospital. The consultant was pretty sure it was a lymphoma and he arranged a biopsy of the lump, a CT scan and a bone marrow test, all within the space of two weeks. When the results were in he confirmed it was non-Hodgkin, and at the beginning of Feb 2009 the final diagnosis of WM was made. I was put on 'watch and wait' for a few weeks, my chief symptoms being night sweats, itching, nose bleeds, weight loss and fatigue.
Chlorambucil then Fludarabine: At the end of March it was decided I should try Chlorambucil which I took for 9 months. This approach was to no avail, as my blood counts stayed the same as did my other symptoms. I was then given a few months' rest before the next line of treatment in Sept 2010. This was Fludarabine which was stopped after three cycles as I wasn't tolerating the side effects very well and it was having no measurable effect on the disease.
Rituximab Success: In May 2011 treatment was begun with Rituximab (DRC), although it took three applications for funding to get this treatment approved. I am grateful that my doctors were persistent! Six sessions (and some unpleasant side effects) did the trick. Blood counts improved, secondary symptoms faded, energy came back and weight was regained. I was declared to be in remission in Nov 2011, and am now on 3-monthly check-ups.
Along the Way: Those are the bare bones of my journey. During treatments I had one trip to A & E with a temperature above 38 (a urinary infection), a couple of visits to Moorfields for a haemorrhage in my eye and a 3-week stay in hospital with a chylothorax. This last condition is an accumulation of lymphatic fluid in the pleural cavity. I was well looked after by the thoracic surgery team at Harefield Hospital, where the treatment included total parenteral nutrition (no food at all for 2 weeks, not even a drink of water!). During my stay in hospital my haemoglobin dropped to below 8, requiring a blood transfusion and my weight dropped even further.
During Rituximab treatment I had to learn to inject myself to stimulate the white blood cells, which was a new skill for me. Also I didn't tolerate the drugs very well so had to go slow on infusion days. I was usually first in at 9 am and last out at 6 pm which gave me plenty of time to get to know the excellent nurses in the Helen Donald unit at Watford Hospital. Alongside all this, my other ailment, which I have had for many years, skin cancer (basal cell carcinoma), seemed to go into overdrive and I was constantly at the Dermatology Clinic having cancerous bits removed. I don't know if this is linked to the lymphoma, but researching on the Internet, I rather think it is.
I now feel in a good state of health, and am keen to make up for lost time. I am grateful for the Rituximab treatment which really seemed to be the one that made the difference. The doctors and nurses at Hemel Hempstead were unfailingly brilliant, and I have complete confidence in them. And just as important were the love, prayers and support of my family and friends, which kept me positive throughout.
Val’s Tale : WM always surprises!
I live in Worcestershire, am 67 and I want to tell you how lucky I am.
Diagnosis: On the 4th March 2008 I went to my GP with a leak from my LEFT nipple, she prescribed antibiotics. I had another leak and my GP sent me to the local breast clinic for a mammogram and was told I had cancer in my RIGHT breast, an incidental finding! I said I wanted to go to the Royal Marsden for my treatment. I had a lumpectomy and cancer was found to have spread to my sentinel node. Further investigations revealed W.M. Another incidental finding! At my local hospital I had been told the lymph nodes would not be removed because the cancer was small so if I hadn’t gone to the Marsden I would be dead by now. For the breast cancer I had radiotherapy. The WM required separate chemotherapy. In Worcestershire there is no Radiotherapy unit so patients have to go to another county which for me meant a whole day for two minutes treatment. I suffered from a radiotherapy rash and very painful lymph fluid retention in my breast, which required aspiration (about 5 times).
First WM Treatment: For my later chemotherapy at the Marsden, I was given F.C.R. (Fludarabine,Cyclophosphamide, Rituximab) and other chemo related drugs. The hospital stopped the chemotherapy after three and a half sessions, my body couldn’t cope with it but I continued the Rituximab. Later I had to be admitted to my local hospital at least 3 times with infections, my temperature kept shooting up and there were lots of nose bleeds, so after x-rays, water and blood tests and when stabilised later at home I had Pegfilgrastim injections. I was constantly ill with upper and lower respiratory infections and lived on antibiotics. My neutrophils were down to .3 and it was decided that I should have a course of IVIG, (intravenous immunoglobulin). This took place in April, May & June 2010. I reacted very badly to the infusions and had to be hospitalised each time so it could be dripped in over 24 hours. It worked and my infection rate and visits to G.P for antibiotics has decreased but when I‘m ill it takes at least 2 weeks of antibiotics to clear the infection.
Is it the WM? A problem I think we may all suffer from is when ill and our bodies tell us something is wrong we and the Drs. automatically think, “ is it the W.M?” I spent 2 horrendous weeks in our local hospital really ill but with no diagnosis despite numerous tests, sigmuidoscophy, x-rays etc. but the Drs thought it was WM related. I discharged myself, saw another Dr. two days later who diagnosed gall stones! My gall bladder was duly removed and the consultant said he’d taken some pictures of my liver and did I know I had cirrhosis! I then saw a hepatalogist who did some tests and informed me it was not cirrhosis but fibrosis and that my liver was damaged (7/12 on the fibro scan), and chemotherapy was deemed to be the culprit. After regular check-ups I was told my liver was repairing itself.
Foot and Hand Problems! My next main problem was my feet. They would swell, my toes were bright red and the whole foot and ankle extremely painful, there were other weird things going on as well so the Marsden referred me to a neurologist at UCHL. After waiting a long time for tests, (lumbar puncture, MRI with enhancement dye and electrical conductivity tests), my feet were no longer the main problem. Now hands and wrists became swollen with bright red fingers. In the morning my left hand in particular would be immobilised; immersing them in warm water and massage got them working again but the pins and needles were very painful. UCHL diagnosed carpal tunnel syndrome and advised surgery on my left hand but as to my feet had no ideas. This was a particularly low point for me so I saw my GP and said I thought it was arthritis and the wrist swelling was pressing on the nerve to my hand, he agreed, gave me steroids and the problem disappeared! I still have flare ups but at least I now know what it is. But what’s next? WM is always full of surprises!
Eryl, Llanidloes, Mid-Wales, aged 61- Treat, Watch, Wait & Walk!
I am a retired doctor (GP and then Old Age Psychiatry), married with two sons and two grandchildren. Before treatment I had ambitions to do more long distance walking and travelling once we had retired but I started treatment only a few weeks after my retirement in 2009. Fortunately I have always been a keen birdwatcher and during the annus horribilis of treatment this and my family sustained me (as well as boxed sets of 'The Wire' and macabrely 'Six Feet Under'!). Even from my hospital bed I was able to see a peregrine falcon and a small flock of pied wagtails living on the warm flat roof of the hospital building opposite mine.
Diagnosed: at the age of 48 in 1999 by chance following blood tests for an acute episode of hip pain brought on by mountain walking through deep snow the previous week. My ESR ( a measure of 'inflammation' in the body) was found to be raised and a subsequent blood test showed a raised IgM paraprotein at 24 g/l. The diagnosis was confirmed following a bone marrow biopsy and I was referred to the Royal Shrewsbury Hospital where I have had all further treatments and most investigations. After discussion and deciding against plasmapheresis and Fludarabine, I opted for 'watch and wait' and remained really very well for the next 10 years.
2009 first symptoms and Treatment: These included fatigue, abnormal bruising following minor injuries and mild peripheral neuropathy mainly affecting my hands but which had previously been investigated and was thought to be due to arthritis in my neck. My IgM was now over 30 and my haemoglobin had fallen to 11g/dl. Chlorambucil x 3 produced no response.
R-CHOP x 3: from February to the end of March 2010 produced no response and about 5 weeks after the last treatment my IgM was 57.9 g/dl but haemoglobin was 'well maintained' at 11.1g /dl. (in Birmingham where I had been referred for possible Autologous bone marrow transplant).
A Second Opinion: with Professor Lister at Barts and the London in April 2010 lead to: R-Fludarabine x 2 and Cladribine x 2 . October 2010 showed that my haemoglobin had risen to 13g/dl and my IgM fallen to 24. This was considered a poor response however and my increasing tiredness and peripheral neuropathy was attributed to my W.M. rather than treatment side effects.
DHAP: (dexamethasone, cytarabine and cisplatin) was given as an in-patient in Shrewsbury an experience which I am not keen to repeat and was followed by another admission with fever for which I was given intravenous antibiotics. Needless to say by this time I was feeling less than perky and rather dispirited. The aim of the DHAP was to prepare me for an auto transplant but by November 2010 my IgM had only fallen to 21 and my haemoglobin was down to 9.8 g/dl. Bloods were taken for tissue matching in Birmingham and mutterings of a donor stem cell transplant were made. The prospect looked grim. However over the next year or more my IgM has continued to fall and my haemoglobin to rise and by October 2011 they were 15 and 12.8 respectively.
Late January 2012. I am currently feeling really very well although with some fatigue and unfortunately increasing peripheral neuropathy affecting my hands and feet and associated with muscle pains and generalized aches. However I am able to keep going all day most days and walk up to 8 miles occasionally and shorter distances several times a week and am generally enjoying life once more. My next review is at the beginning of March in Shrewsbury (I have been seen several times over the past year with the outcome of more 'watch and wait').
So I am not sure what happens next. More 'watch and wait' I hope and then perhaps more effective treatments may become available?
Gil’s Story: From Bad to Worse to Good
2011 was the worst and best year of my life: In January my Waldenström’s was found to have transformed into the dreaded Richter’s Syndrome. There were tumours throughout my lymph system. The internet prognosis was five months of life.
One year on, I feel better than for five years. It has been quite a journey.
Diagnosis: Autumn 2009. For two years before this my blood had tested strangely. Symptoms included severe pain when walking, poor circulation, angina requiring a Stent in an artery, a bout of double vision, a troubled digestive system and anaemia. Scores of tests followed. Heart doctors, gastric and vascular specialists, opthalmologists; I saw them all. The WM diagnosis curiously was a relief. At last there was some kind of explanation for all that had gone wrong. In 2010 things got worse. On holiday in France I developed an acute kidney infection and was in hospital for a week.
Back home my IGM was steadily moving upwards and I was referred to UCLH. A course of Rituximab was planned, but before that could start I contracted shingles which meant another stay in the local hospital. I had acute stomach pains as well as the shingles pain and my digestive system stopped working. I was allowed home on Christmas Eve but all festivities were cancelled. Christmas dinner was three Brussels sprouts.
R-Chop Inpatient Treatment: 2011 started even worse. In mid January feeling very unwell I was called back to UCLH for more blood tests. I was admitted to the Leukaemia and Lymphoma Unit. I was in T.16 for four weeks. A scan showed that the WM had transformed into full blown aggressive cancer. There were tumours in my neck, lungs, kidneys and throughout the lymph system. The doctors said they could almost see the tumours growing. Despite neutrophils of near-zero, the team went ahead with R-Chop chemotherapy. I won’t dwell on the dreadful mouth infection, exhaustion, weight loss and the rest. All seemed so bleak that UCLH put us in touch with Marie Curie Cancer Care and their wonderful support centre in Hampstead. I had five more rounds of R-chop and two further Rituximab top ups as an outpatient.
Incredibly, the next Petscan showed the tumours were gone. The doctors said I had experienced a complete metabolic response.
At the last count my IGM was down from its peak of nearly 40 (4000) to just 2. I can now walk almost normally. My digestion and general health seem normal. My energy levels are good and I feel strong. 2011. Bad and good. Now 2012!
I am 69. My working life was as a teacher and deputy head of a large comprehensive school in Newcastle and have lived for the past sixteen years with my husband Philip Aris in Crouch End, North London.
I have two grown up children and two stepdaughters and a stepson. We are all very close. Between them they have provided us with eight grandchildren aged from nearly 21 down to less than 12 months.
My passions are making ceramics which was my early training, gardening and travel.
I have had wonderful support from Philip, my family and close friends. Relationships have deepened and strengthened as the result of the whole experience.
If there is one thing WM has taught me it is to enjoy every second of every day to the max - And I do!
Raphael’s Tale: WM, Masses & CNS Involvement
Diagnosis: My diagnosis was accidental. In 2006 I went to my GP with an unusual back pain. For some reason he suspected something and sent me for a blood test. The test suggested the possibility of a lymphoma, and a bone marrow biopsy confirmed a diagnosis of LPL/WM.
First Treatment: Fortunately, part of the basic workup at my clinic included a CT scan. (NB- that should always be the case.) The scan revealed the source of my back pain - an agglomerated mass of LPL/WM cells inside the spinal column. It was thought that I needed urgent treatment, so started intensive chemotherapy immediately which kept me in hospital for much of the next 5 months. That was all pretty awful but I did achieve a very good response.
Second Treatment: Three years later, I experienced a similar pain, and on investigation found that I had another mass, in a similar location, but at least outside the spine rather than inside this time. Transplant was considered but I rejected it. Instead I had more chemo, followed by radiotherapy. The planned 6 sessions of chemo were interrupted because after 4 sessions a CT scan showed no decrease in the size of the mass. However, months later, the mass had reduced - it just took longer than expected to show results. It is worth noting that CT scanning only shows 'quantity' of mass rather than 'quality' - that is to say, even if the mass has become sterile, its ‘shape’ still shows up on CT scan.
Abnormal Masses: The kind of masses that I have had can develop just about anywhere in the body. Because so few patients have these masses developing though, many questions about them remain unanswered. For example, do they develop exclusively in the lymphatic system (lympadenopathy) or not? Are they cancerous cells which migrate and then congregate together? Does a single cell migrate, lodge in a suitable micro-environment and then proliferate?
Low IgM: Another unusual feature of my disease is that I have relatively low IgM - enough to 'qualify' as WM, but actually only just outside the normal range, mostly. My case underlines the observation that low IgM is not always a reliable indicator of absence of disease.
Watch and Wait: Since then, I have been on watch and wait, my condition being described as 'stable disease'. Scans reveal some very small masses, which have not (for now) been growing or producing troublesome symptoms.
Iron overload: Blood transfusions resulted in excessive iron. Just 20 units of red cells raised my serum ferritin count to over 1,000 (normal range 20-300). For several years this was left alone. More recently, however, it was thought to be time to reduce this because it can affect the internal organs. I have been undergoing venesection (blood letting), and am nearly down to normal now. So serum ferritin is something worth having tested after receiving blood products.
Fatigue: I find the worst part of the disease now the attendant fatigue. It produces a sort of low grade malaise that comes and goes in waves. At first it was frustrating to feel robbed of one’s former energy. However, I have come to accept this and to let go of useless feelings of loss over this. What makes it easier is managing and measuring my energy levels - carefully pacing myself. Not over extending, not going too long without rest and recovery. If I do that then I can enjoy the time that I am active, more. If I don't, I suffer exhaustion, further malaise, and possibly illness.
My study: I have studied my disease for 3 reasons. 1. My natural curiosity. 2. Proactive study gave me a sense of having some handle on what was happening; which I found psychologically helpful. 3. Given the rarity of LPL/WM, with masses, I felt I might have more of a role than usual in managing my care together with my doctors; and there have indeed been occasions on which I have usefully brought things to the attention of my medical team that they had not been aware of.
Sheila's Story: neuropathy is the clue!
Neuropathy: In August 2002 I became aware of a strange sensation in my right foot – when standing I felt there was a ridge under my heel, but there was nothing to see. By January 2003 both feet were affected, numb in parts to touch but painful to stand or walk far.
By this time my hands were also troubling me – the tips of the fingers were numb/tingling. During the spring of 2003 I had tests with a rheumatologist and two neurologists, one of whom did nerve conduction tests. The other prescribed a low dose of Amitriptyline, subsequently changed to a low dose of Neurontin (a pain blocker). All this time the pain was becoming worse with more areas in my feet affected.
In October I was advised, and had, an operation to release a “trapped nerve” in my right foot – needless to say - no improvement!! Together with physiotherapy I went down the “alternative” route. Homeopathy, osteopathy, reflexology, acupuncture. By the summer of 2004 I was really down, the pain was increasing and no-one was taking me seriously, some people thinking “It’s all in her head”! The only answer from the medical world – Peripheral Neuropathy - live with it! But something must be is causing it?
By chance I was talking to a retired medical friend, mentioned my problem and he said he would have a word with a neurologist he knew. 1st December 2004 saw my ‘pain filled’ life begin to improve – an appointment with neurologist Dr. Tim Lynch, taken seriously at last, and in January ‘05 went into the Mater Private Hospital in Dublin for extensive tests.
Finally Diagnosed: Two weeks later when my haematologist, Dr. Patrick Thornton, said that they had finally diagnosed WM, that it was a rare non-Hogkins lymphoma and they wanted to give me chemotherapathy (but my hair wouldn’t fall out!) My para-protein was comparatively low at 16gr but a bone marrow biopsy together with the appropriate blood test confirmed the diagnosis. The neuropathy was, and remains, my only symptom. I was so relieved that there was a reason for the pain I didn’t much care that it was cancer.
First Treatment: And so began a very steep learning curve. They started me on Chlorambucil and Rituximab but after two monthly sessions changed the former to Fludara (Fludarabine) as the para-protein was not coming down. I had the usual nauseous and lethargic side affects, but being basically very healthy managed to carry on with my life fairly normally.
Neuropathy remains my only symptom: After a total of seven chemo sessions my para-protein had reduced to almost nil! So, success for the medics, BUT the nerves in my hands and feet are irretrievably dead or damaged and the resulting pain has to be ‘managed’ with the help of a combination of a medium to high dose of Neurontin and a low dose of Amitriptyline. I have learned to live with the almost continual pain in my feet and numbness in the tips of my fingers. There are good and bad days, with the ambient weather temperature playing an important part – the feet don’t like too cold or too hot!
I see Dr. Thornton every six months and the para-protein levels have gone up a little but are stable, no other symptoms of WM have emerged.
When newly diagnosed I really needed to talk to someone else with WM, to compare notes. Eventually, with the help of Lymphoma Support Ireland, I went to the Stockholm Forum, met another Irish WMer, became involved in the IWMF and helped start our Irish WM Support group of which I am currently the leader.
Irish Support Group- Please email firstname.lastname@example.org for contact details
We'd like more stories to add to these on the website and to have for our 'patient tales' wall . If you can help the project, simply email us.