Watch and wait- nutrition and preparation for treatment

Hi, have they explained you could be on watch and wait for a while, some have been several years before needing treatment, if they have not explained it may be worth having a chat about how slow they think its growing or if its stable.

Re heathy eating research supplements or better still discuss it with your care team they are best placed to advise you, what we normally say is eat lots of fresh fruit and veg and follow a balanced approach, but do discuss with your team before you start any changes.

John  

Thanks John,

Yeah I understand some people can wait years before treatment. My bone marrow will probably determine kick off. I've been told it'll probably be within the next year.

Thanks

Hi Annie Anniemcn and welcome to this Lympomaniac group.

I had a different type of NHL but I see from your profile you are heading down the Stem Cell Transplant (SCT) route - you will see in my profile that I have had two Allo Stem Cell Transplants with cells from my brother.

The first was June 2014 the second October 2015......when the time comes we actually have a very supportive dedicated Stem Cell Transplant group where you can connect with others who have been on the SCT rollercoaster.

Diet? as John says a good health diet is the best thing you can do. Before my SCTs my unit dietician told to up my protein intake as you may well start to see your weight drop off during SCT treatment. One of the challenges in SCT is mouth issues so eating can be hard for some.

We can walk this with you ((hugs)) from a safe distance.

Hi, if its in the bone marrow, have you have a BM biopsy then that may well be the case, they are a number of variables with slow growing and MCL seems to fall in to 3 categories, one aggressive needs treatment, indolent where it can be a couple of years or more and then a type that falls between the 2 which sounds like your type, where treatment may be given within a year or so. 

The good news is the are a wide range of treatments available to mange this type much better and the nordic regime followed by a stem cell transplant seems to be the best way forward when treatment starts.

The are a few who have been or are in your situation who post now and again so hopefully they will see your post and reply. I had DLBC 11 years ago and had rchop, which did the job for me, any questions just ask.

Thanks John,

Yes mine is very slow growing when looking at nodes but the bone marrow is what they'll be watching closely.

I've a great doctor and am confident in the protocol she has planned.

I haven't been reading much detail on treatment etc. Am happy to leave all that til things kick off. I know time scales and understand it's going to be tough going. I have also been told it'll be my own stem cells used.

It has all been a bit surreal,the last few months of tests,the diagnosis and now a pandemic thrown in.

Thanks Mike,

That's some profile you've got there! And Johnr too!

I can't read them just now but I will.

I'll join the stem cell group at a later date too, thanks.

All the best.

Hi Annie, you sound "prepared" for when the chat comes about treatment so enjoy life and when the times come that's when you need to understand more so you can make informed decisions, till then why worry. 

All I would say is have a chat with the consultant about your level of risk to Covid 19 if its not been had already.

Here to help as and when you need it

John 

Hi folks,

A question I think I know the answer to but thought I'd ask..

I just got my letter re 12 week isolation. I have two 4 year olds. I haven't been out in almost three weeks, kids haven't been out in two weeks and my husband is out as little as possible...a couple of times to the shops.

You guys are very used to the isolation thing through treatment. Do I really need to keep the kids away from me at this stage? We are being very careful in every other way. Am I bring naive?

Thanks

Hi Mike is the isolation expert due to his stem cell transplants, for me it was common sense and risk assessing situations during my 6 months of treatment when I had no immune system or just a bit of one. With children its hard to keep separate however given they are not at school the is less chance of them picking up bugs and bringing them in to the home. As you have not had treatment yet your immune system has not been battered or nuked, but the disease does weaken the system so you have a higher level of vulnerability to the rest of the family is my understanding.

Have you been given a named specialist nurse yet? if so ring and talk to them and explain the situation what you are doing and what can they advise, these are unique times and the purpose of the advice is to reduce your risk of infection and reduce the pressure on the NHS and I must admit hospital would be the last place I would want to be as this virus progresses. 

The final bit of advice would be if you have not had any blood tests recently ask if you can, so you can see how your immune system is and that will help you assess your risk, as that was the route I was going down before we were told the letters were coming and not to see your GP, but wait to see if you receive one. Having seen the latest guidance on another site that is specifically about lymphoma, I don't expect a letter, but am staying at home and only going out for walks, best to be safe than sorry as you and I don't know the version of the virus we may pick up. I do know someone who has had the mild version and a good friend of a friend had the tough version and died this week, that's the reality of what we face. Good hygiene, making hand washing fun for the kids and common sense should keep you safe, it worked for me during treatment and is my approach now.

John

Ok thanks John..I get my bloods done every 3 weeks and have been told for now that this will continue. 

I'll give my key worker nurse a call next week.

Stay safe.