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Hi Rosie

So sorry to hear your bad news. Hoping this is the turning point and that things start to improve from here. Wishing you all hope for the path forward from here.

Regards,  Cormac 

Hi again Rosie30 and sorry to hear how things have developed…..

I have had many scans over my 25 years and never had a full body scan done…… I don’t think full body scans are normal practice.

Unfortunately living with a Low-grade non-Hodgkin lymphoma like your FL….. can be an unpredictable journey.

Lymphoma can turn up basically anywhere in the body. I have actually talked with a few folks on the various Lymphoma Action.….. Support Platforms who have been successfully treated for bone Lymphoma.

Lets look for you to get clear answers soon ((hugs))

Hi Rosie,

I had Grade 4 lymphoma in my hip bone, replaced most of my bone marrow.  That was 5 years ago and I'm still in remission after my only 6 chemo sessions with rituximab and bendamustine. No bone problems.

They've got better options today than bendamustine, due to problems with persistant poor immunity, which is still an issue for me, but I cope.  If my lymphoma ever comes back, I'd have the latest treatment with confidence.

Hope your appointment answers your questions and you can plan successful treatment with your new haematologist.  Best wishes

Cecren

The more i think about it the more i believe this is where lymphoma started...in my shin bone.  Them prob spread to left groin nodes.  Ive had problems with left leg for 2.5yrs...well before i was being tested at hospital.  My leg just blew up...i mentioned it to a Clinician and she said its just oedema most people get it as they get older! Didnt question it whatsoever and now look at me!  Even my CNS recalls me complaining about my leg to old Haemo....he did nothing!

My old haemo said my tteatment would be B and R.  There again, he said i prob wudnt need treatment for at least 4/5yrs as mine is grade1 slow growing FL.  Famous last words!! 

I think full scans should be normal practice.  Thats how things are missed and look at me now!  At least one (the first) scan shuld be full.  

I think follicular lymphoma is one of those slow growing things that is easy to miss.  I reckon I had mine for some 7 or more years because a biggish patch of thin bone in that exact area showed on a DEXA scan that long ago.  My GP just put me on Vit D, no investigations. Being female and 50+ can lead to any bone thinning dismssed as due to age/osteoporosis...

Anyway, point is that it's possible to be treated successfully even with a late bone diagnosis.  It's hard not to be alarmed, but I hope you can regain your confidence in your team and have a really good outcome.  Incidently, the B&R was very easy to tolerate & only took 6 sessions.  I'd do it again if needed.

Cecren

Hi Cecren

Thank you for your encouraging reply.  Did you lose your hair when on B&R? Im worried as i have female pattern baldness anyway...mum and my gran had it.  

Had my blood test results back today and various tests higher than last time (2wks ago).  Im panicking over these now.  I see my Haemo on Wednesday just hope im not diagnosed with any other conditions!! 

Thanks again,

Rosie

B&R didn't seem to affect my hair at all. 

I was issued with a rather chic wig and had my own hair cut short to match the style beforehand.  Very Anna Wintour, I thought!  I was due to have the older RCHOP mix, including some components which are very likely to cause severe/total hair loss.  I was ready to face this, but my treatment was changed (just before it started!) to B&R.

There are some assessments to find the best drugs for our individual cancer types.  I don't undertand this technical stuff, but I trust it for the best and fastest results.  I was secretly pleased about the hair though... Vanity, eh?

Cecren

I saw my new Haemo yesterday.  He said all chemos cause hair loss but obviously not!  I think it will affect me mentally losing my hair.  I know how it makes me feel now with it thinning.

So the Xray i had on my shin bone doesnt show much and he's ordering an urgent MRI scan on my leg.  CT results showed only slight increase in the size of my lymph nodes so dont know why im getting so much pain in right groin.  Although ive had my GP on fone with results of my urine test and i have an infection.  So yet more antibiotics!!! Ive been on loads!! 

Haemo wouldn't discuss treatment till he knows what my diagnosis is on my leg.  He did say he'd have kept me on w&w if it wasnt for right groin causing me so much pain!!  I must say i dont really want treatment but guess i wont have much choice.

Thank you for your support.