Rebounding - good or bad for FL Stage 3a?

Hi, an intersting questions and perspective or approach to managing the disease, whilst exercise is seen as beneficial I have no idea how rebounding would fit into the bigger picture, you may want to go to ask an expert and see if the physio is still active and ask this question there.

The advice when having treatment is to drink plenty as you have to protect the kidneys as well as flush the chemicals and dead cells out of the body. 

As fnhl is slow growing and possibly has a low tumour burden will the defective cells be so prolific that extra steps need to be taken to mange their impact on the body? I don't know but given it can wax and wane and patients can have long periods of stability would it make a difference, my guess would be either not or very little but its just basic thinking. Hence the advice to ask an expert, or discuss it with the consultant or specialist nurse.

do let us know if you do and what the response was.

John 

Hi John

Thanks for your thoughts. Our consultant wasn't sure so I need to seek out more of an exercise specialist with specific cancer knowledge, I guess.

By the way, am I right in thinking that you wrote a post about a trial or a study for a new protocol B + R was it? I've tried to locate is but couldn't find it. Could you possibly post a link?

Many thanks and all the best to you.

Diane

https://clinicaltrials.gov/ct2/show/NCT01332968?term=Bo21223&rank=1

Diane this is the link that Paul shared and we had been chatting about this new treatment which is B + O or O + B and is looking good and on the long thread the are a couple of people on it.

For research go to the ASH conference papers and the blood journal and from that you will start to see other sites to who have archives of reports and studies.

john

Hi Diane2012

I'm afraid I don't have an answer to your question, but I would be interested to hear what you discover.

Jan x

Many thanks, John :)

Sorry if this is a daft question but how would I find the longer thread?

D.

Hi, sorry to confuse, it was not a longer thread I was scrolling through posts and it took so long to find the link for you the are three people receiving O at present 2 who post regular Peter and Jenko (Paul) so if you follow their posts you will see how they are doing and what treatment is like. Clicking on their names allows you to see their posts when you use the menu that shows on their page on the left. 

John 

Hi Diane,

please do feel free to ask if you have any questions about Obinutuzumab.

im having it with Bendamustine so my experiences could be different if your husband is likely to receive a different chemotherapy drug.

kind regards 

paul

Hi Paul

Many thanks, I will do. At the moment he's on the dreaded W&W but when/if things change we'll have to weigh up all the options so we're keeping across all the latest protocols and combos.

I've read a considerable number of reports on the positive results of O and sincerely hope it does well for you. Sounds like you're coping with the side effects well too.

It's a true horror having this diagnosis at any time in life, but the fact you're young I'm sure will put you in good stead as your body and immune system will be strong at the start.

I'm sure you've been given plenty of good advice for your treatment period but two pieces I was given when going through this with my mum was to try and get out for a walk everyday, even if you feel very tired, and even if just for 5 mins.  Also, if you read an iPad or Kindle during your chemo, I can recommend the small triangular support pillows which mean you don't have to hold the device the entire time, think they're called Coz-e-reader but I'm sure there are other brands.

all the very best to you and we wish you well.

Diane

Hi Diane,

i loved my time on watch and wait (genuinely). I used that period to go on 2 holidays and watch the World Cup over the summer enjoying all the great weather we had here in the UK. I wish I could have remained on watch and wait for longer, so hopefully your husband is fortunate enough to do that.

thanks for your advice. That iPad thing certainly sounds useful for around the house as my 3 year old often takes over our TV and I’m left in the corner trying to watch football on the iPad.

im also in agreement with your walking plan. I think it’s very easy for days to go by and realise you haven’t left the bed/sofa and I think it’s important not to get in that rut.

paul

Hi Paul

Hopefully if things continue 'calmly' we might be able to grab a winter break somewhere in the mountains (our Happy Place - very restorative and lots of good clean oxygen :)) I imagine getting holiday insurance will be more of a challenge but understand there are some specialist companies out there.

As for the iPad stands - Ikea also do a very good one for £10 made of bamboo which we have in the kitchen and is great. The cushion ones are great for laps and for chucking in a day bag.

Take care

Diane