Not sure why we’ve been loosing some messages but what I have been doing is it copy and pasting into my ‘notes app’ just incase it disappears when I send and then transfer back if necessary..

Hey Sally 

Yes it’s not been a bad hospital stay to be fair!

CRP or C-reactive protein is basically an inflammatory marker picked up from a blood test. Would be routine that they check this when you have been neutropenic in the past. Used with other markers to monitor infections, autoimmune problems and cancer amongst other things. I think it is probably the most common inflammatory marker to be used when looking at infection.

Oh I’m sorry Sally, don’t be thinking about those future terrors too much. One can always build them up their head and they never happen or are as never as bad. Both our futures are out of our control to a certain extent so what will be will be and anything not very nice that does pop is very transient. Probably more transient than all the time worrying about it. 

I don’t think I’ve had any immediate side effects from the Len on the short-time I have been on it ( back on it now). Although yes, it probably hasn’t been helping my white count but probably best not to compare yourself to me on that one. I think it is actually the steroids that seem to aggravate my neuropathy more than anything as it seems to intensify after a dose..

haha I’m pleased to hear the steroid effects have actually been more positive. And you’re enjoying your free NHS Botox!!

Thanks for saying about FBC. I’m guessing I was wandering whether your main bloods bounce back to normal when you have  been off chemo for a while? 

My neuropathy surprisingly started with CHOP we believe. It was a late effect in 2021. Maybe 2-3 months after I stopped chemo. With extreme pain followed by numbness in the ball of my left foot and big toe. I probably had maybe four episodes of the pain on and off over a month. Each time the numbness got worse. 
Later, probably with the bortizemab. It deteriorated a bit further and experienced some on my right foot for the first time. I have a new baseline, I’m not sure with current treatment options (they’re aren’t any) haha that could ever improve although I have found acupuncture helpful. Whilst taking the VTD-pace which included valcade/bortizemab, the neuropathy was a bit more widespread but this largerly went away as soon as I stopped treatment.  I take B12 and Pregabalin to help with some of the weird sensations I would get. Don’t really get pain as such anymore.,I’m not sure how much the pregab is helping right now. 

I’m not sure about the etiquette of sharing information between doctors other than within a single trust. But that would be a very closed way to look at things if that were to be the case. All I know is, we don’t have the best track record with sharing tests h  information etc globally and drug companies obviously want to hold onto their new ideas and maybe not collaborate. This has made developments obviously slower than they could be and I know with something like HIV, people have been actively trying to change this way of working. Either way Sarah we can collaborate as much as we can! I think perhaps we collaborated much better with Covid, things worked much faster

Still in an NHS hospital and it will remain this way. 
Thal and Len are from the same family. But Thal has been around since the 50’s I think. It was withdrawn for awhile because of its link with damage to foetus’s and this gave it a bad name. I think in the 90’s it was reintroduced as a cancer drug. 
Len is newer. Given approval in 2006 and made specifically as a cancer drug compared to Thalidomide which was discovered more as a fluke. I understand it is more potent and less toxic. The patent also came to an end a few weeks ago making it much much cheaper for the NHS. 

Well I hope you enjoy your trip away and you can shut off from it all for a bit. I think I’m pretty safe to say I wouldn’t worry about the new regime too much as it is generally well tolerated. I’m sure what you’ve had already is far worse. But that doesn’t mean it doesn’t have a good chance at still being effective. It doesn’t always need to make you feel horrible! 

Take care Sally :)

Si

Oh and I didn’t remove your email I wouldn’t have been able to edit your post..it must have been the moderators..

Hey Si, 

I love Sally. No one has used that diminutive form of Sarah on my name before!

I Just wanted to thank you for your messages. Not only are they full of useful information but I always find them reassuring and calming. 

I guess that as you've been living with the illness for a long time, you've got a perspective on it that as a novice I can't find yet. I am grateful to hear the tone of your mails. They are a real comfort. Thank you.

I hope you get something from mine too.

All the best, 

Sally!

Hi Sarah,

I’m so sorry! I knew Sally didn’t look right when I’d written it but got distracted by composing the message! But we can go with Sally if you’d like haha

Pleased to hear I can be of some support to you at the moment. Your brain definitely changes along the journey.  My outlook and perspective on life is very different to how it was a few years ago. Which in some way is no bad thing! But it’s still tough as you know. 

I most certainly get a lot from your messages Sarah. I really look forward to reading them- It’s really helps to know you’re not the only one!

My CNS has agreed that I could exchange care details. . So will email over! 

Hope your day is going okay. Very grey down here but I love the coolness!

Simon

Hey Sarah

Been a bit rough of late. Switched to IV meropenem in the end, that seemed to bring my CRP down finally. They always try tazocin first but has never really done much m for me with any infections I’ve had over the years.  Most likely infection of the lungs again. But possibly a bit of remaining prostatitis also. Whilst I was admitted and since coming home I developed some neurological symptoms. Partly  involving the eyes. Can I ask how long your visual disturbances went on for, before? I know they put it down to aura migraine but did they say possibly why? 

Hard to tell the effect of the Len on the PBL yet. As the relapse was so minor and internal but doesn’t seem to be any evidence of it running away with itself so far! I also stopped treatment for a few days while being in hospital with the infection. So that may have interrupted things. I have just  finished the first cycle of Len. Can’t remember whether I said it’s a four week cycle with 3 weeks daily of Len. So I’m on a week break. Dex is once a week every week..

White count was low before starting this treatment as you know. Seems to have become worse on new regime. This obviously won’t help with the infections I’ve been getting. The panel met on Wednesday to see whether I can receive the IVIG therapy alongside my chemo. But still waiting for a report. Really hoping I’ll be accepted because this should give me a boost.

Pleased to hear your bloods are in good shape though. Certainly will help you going forward and would suggest your bone marrow hasn’t been effected too much by the chemo you’ve already had and also the lymphoma. Which is great. 

Sorry to hear things are moving slowly. Keep pushing, you have every right. Did they give you a date when the panel will meet? Keep up with those steroids in the mean time, they do help. Feel free to use my case if you haven’t already, if necessary. It’ll help that Len is much cheaper now. Any problems let me know and I’ll see if I can get help and advice from my end

Haha I’m sure my specialist nurse gets a bit of hard time from me. I’m forever asking questions. Sometimes unusual ones, that they wouldn’t normally get asked. I think I keep them busy! 

Simon

Hey Sarah

I wouldn’t say I’m debilitated. I haven’t actually felt too bad over the past few days. Partly due to the steroids I would imagine. But my eye sight is a constant frustration at the moment and making things harder. 
Yes always more to do at home. But this can be good for you and good for personal autonomy. Energy not too bad but yes I generally find things take me longer than they once did!

it is interesting what you say about your visual disturbances. Mine seem to be largely focused with the right eye although there is some blurriness in the left. It’s like an aura migraine with a blind spot in my central vision  and wavy movement. But it has become stuck for a couple of weeks  now., Eyes look fine according to ophthalmology. So there must be some aggravation of the optic nerve. Whether this is drug related or not, not sure. I’m on a long list of medications! Booked for an MRI on Sunday so will see if that sheds any light. Apparently your eyes can deteriorate temporarily after long periods in hospital. So that probably hasn’t helped either! 

The other symptoms I had, were on a couple of occasions. The week before last. Where I couldn’t control movement of my limbs properly and my speech. Both episodes were short-lived and relieved by rest. Again not sure if this was drug related.Severe migraine can lead to these sort of symptoms but obviously reactions like this shouldn’t be overlooked.

My neuropathy in my feet has also been bad just recently and I’m sure this does impact my balance. Find that I’ve been very up and down with it though over the past couple of years. Would welcome any exercises you are able to advise me on relating to this :) 

The plan to start with was 3 cycles of Len then re-scan I think. I’m presuming that is still the plan! 1 down, 2 to go! IVIG was also very new to me. So don’t worry I had to look it up previously! 

I’m sure the wait must be agonising for you. I hope you might get some  confirmation this Wednesday. I’m sure  once agreed you will start pretty sharp-ish. Hang on in there. 

All the very best Sarah, 

Simon