Hi
My husband went from going to MG on 2nd February, to diagnosis of WL (after multiple blood tests, a CT scan, bone marrow aspiration and bone marrow biopsy) on 20th February. On 21st he began Chemo and Immunotherapy and blood transfusions. He's just finished the second 1 and a half days treatment on Friday afternoon. He was ok the next day, probably just relief it was over. But he's been very lethargic all day, and is nauseous and has no appetite. He has started taking the nausea drugs, but so far they haven't helped. I've some questions, about how to help him. What can I make/buy/cook that is a good diet for him while he's being treated? We are both long term vegetarian. Oh and forgot to mention we live in Brittany. Any advice would be so helpful. He did manage a short slow walk around our field this morning with our 4 cats, which seemed to cheer him up. And is it ok to leave him alone for a couple of hours to go shopping, and I have to pick up a new prescription for a strong antiviral he's going to have by injection here at home by our local nurse.
Hi BretonBelle 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 Waldenström’s macroglobulinaemia but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade NHL (Mycosis Fungodes) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Fatigue (being lethargic) is a normal side effect of having treatments but bizarrely keeping some simple activity going does actually help over come parts of this….. the less he does the more fatigued he will get and his recovery will take longer so well done him taking some walks
Nausea can also be one of the rotten side effects, I had a significant amount of chemo over my years (see my story in the link below) and on the whole we controlled this by regularly changes to my anti sickness meds….. I was only sick a few times in all my years. It would be worth talking with his clinical team about this as there are lots of different meds.
In the UK patients are assigned a Clinical Nurse Specialist (CNS) normally a Macmillan Funded post..,,, who is the patients and families go to for information but I don’t know the system in France.
Of course it’s ok to leave him, my wife worked all the way through my many treatments. Just have a phone at hand as there are times when he may develop unexpected temperatures and these are signs of Infection so do need to be called in.
I am not a vegetarian so can’t help with this one. The main advise I was given was follow a good balanced diet and the diet had to follow a pregnancy diet as some foods like runny eggs, unpasteurised cheese, shellfish can carry food bugs that a compromised immune system would not be able to fight.
Everything had to be very well cooked, salad had to be ‘very carefully’ washed….. when reheating food it had to be done well and we never had reheated rice,
He my go off food so the main approach is to eat little and often. At one pint I was living on small cups of good homemade soups that had double cream in it….. food in fuel and he needs fuel to produce energy so anything high in protein is the best fuel.
You may want to send the food question to our team in our Ask an Expert section but do allow a few working days for a reply.
Always around to help more or just to chat
Hi Mike
Thanks so much for the reply, it's great to read other people's stories and about their experiences. Yes, you're quite right, Pete survived being at home without me while I did some shopping!
He was worried because we've got 80kph winds here at the moment, so it was a good job the shopping was 'a big one' and weighted the car down!
Peter had Vincristine during the third day of his three day initial hospitalisation, and MabThera. He had no side effects from that, and ate norrmally. However, the session he had all day Thursday and the Friday afternoon in 'Hopital de Jour' (out patients) has made him quite ill. Good advice about rice, as there's some in the fridge which I'll throw out, it was going to be his dinner! And about the soup, as he can only keep small bowls of soup down, so I bought ten packs of green vegetable soup. Also that's interesting about you can change the anti sickness drugs, he's got Métoclopramide, one morning, another noon and one evening. Antibiotic he has one a day, but only Monday, Wednesday, Friday. Anti viral every morning and evening. And others I can't even read the doctor's writing, then have to translate!! Then Binocrit by injection from our local community nurse, who comes every Monday to the house and does a set of blood tests too. She then comes Thursday too, and this week he will be having an injection of Zarzio 30, for 3 days. It's quite a lot to get one's head round.
So glad I found this forum, and your advice is and will be invaluable, thanks so much for 'reaching out'.
Hi again BretonBelle , I pleased that you have found my post helpful.
There is no real instruction books that cover everything that may come along but you may find the information on the Lymphoma Action site very helpful. Lymphoma Action is the UKs only Lymphoma Specific Charity who have lots of information, videos....... unfortunately the support side of the charity is specifically limited to UK residents.
I had Vincristine as part of my initial chemo regimen (R-EPOCH), this had me in hospital for 6 days/5 nights on my 2 IV pumps 24/7 (so 120+ hours) for my 6 cycles and I honestly did ok........ but my chemo was only a stepping stone for going onto further treatment (see my story below).
I am guessing that the antibiotic on Mon/Wed/Fri 'could' be Co-trimoxazole (Septrin) to protect against Pneumonia..... I was on these for a good 4 years. The ant-iviral could be Clarithromycin.....again I was on these for about 4 years.
I was on lots of other drugs during my various treatments - at one point I was talking about 40 tads a day..... but this, like your husbands meds will pass.
I was 'self injecting' G-CSF Injections Growth Factor Injections (Zarzio 30 is just one of the many types available across Europe) for 4-5 days after my 6 cycles of R-EPOCH and daily for 4 months following my second Stem Cell Transplant.
These injections are designed to ‘wake up’ the bone marrow but unfortunately there are side effects like bad bone (my nurse called it bone marrow birthing pains). But I was also prescribed Antihistamines like Piriton or Clarityn by my teams as this bizarrely stopped most of the pain developing but not a lot of hospitals do this.
There are a few group members who have WL or are supporting family with WL so let’s look for the group members to pick up on your post.
You can also click on the main ‘NHL Group’ title and this will bring up all the group posts. Have a look at the posts and as always you can hit reply to any post and connect in with the wider group conversations.
Always around to chat ((hugs))
