Hey Sarah

This is actually the second time I've written this. The first time when I finished it and pressed send it disappeared. Arrrrrgh!!
 

CT procedure went okay. Only a bit of soreness for a day and then it was fine. The tiniest hole-it's amazing what they can achieve now with the smallest incision. Results should be in 1-2 weeks. 

Sorry you were getting some nausea. I don't find Dex effects me this way but everyone's different. Make sure they've prescribed you some anti-sickness. I find ondansetron works well for me. But on the odd occasion I've had to take a selection!

How long will the cycle last? I'm guessing you are admitted? Definitely have to take the good days when they come and make the most of them. Glad that you've been able to get out and about. Also pleased to hear you were able to get out last weekend. Sounds like a nice spot where you are now and the best time to be there with all the great weather we are having! 
 

I was planned to have an autologous transplant back in September but they just couldn't collect enough stem cells. I caught a nasty infection and then I relapsed! So that was a no go. I think now if I have a transplant it will be allogenic. They have already highlighted 2 potential donors. One in the U.K. and one in Germany and they are both 12 out of 12 matches. Like you I've also found little research on PBL and transplants. So there's not a huge amount to go on. But as with other lymphomas and myeloma it makes sense.

I haven't worked for some time Sarah. My work is just a bit too heavy and it can be a bit of dirty job and obviously have to be careful with infection. What about yourself?

Hope you're still feeling okay. Hang in there! 
Simon

Hey Simon, 

I hope you are having an OK week? No results yet I guess....?

So the GDP (gemcitabine, dex, cisplatin) is entirely outpatient. It's a 21 day cycle. Day 1 gemcitabine and cisplatin IV, Dex days 1-4 orally, Day 8 gemcitabine. It's an entirely different rhythm and experience from the EPOCH which was a 4-day non-stop infusion as an inpatient.

In terms of side effects I am not doing too badly, virtually no nausea except when hungry. Fortunately I have a good (my husband would say amazing) appetite and food tastes OK. (I understand that's a real issue for some people). I had the shakes on days 5-7 and "not much juice in my legs"  for a few days but OK. I think the Dex knocks me around more than the chemo!

How interesting about ondansitron. I was prescribed that IV when I was sick several times a day for 6 weeks last summer. It just didn't work. Things turned around for me when they put me on metroclopromide.

I had a scare yesterday. Started getting visual disturbances. They sent me to Eye Casualty. They were worried about my retina. Anyhoo, retina is fine. They think it was a migraine aura. I wouldn't be surprised. I am finding it very stressful just now.

I am struggling because I can see and feel the tumours and so now the chemo has started, it's hard to look at them every day and see no change as yet. I don't know which is worse being able to see them or NOT being able to see them. What a choice!!!  I have signed up for counselling again today.

I stopped working through my illness and treatment for the last 6 months of 2022. Once I went into remission I taught online a few hours a week. No live teaching though. Because I do a lot rehab work there's a lot of breath work and hands-on cueing - way too dangerous for a fragile immune system.

Now I have a sense of how I feel on this new chemo regime, I may teach a few hours. I love my work, it makes me feel 'of use' ... and gets me oiut of my own head!!

I hope you are doing OK. I can't tell you what a comfort it is to know you are out there!

All the very best to you.

Sarah

Hey Sarah

Yes week has been okay thank you. Just been catching up with people, have done a few bits in the garden! Energy not fantastic at the moment to be honest.

So the lymph node regrettably came back positive for PBL. The Thalidomide and Dex had cleared all the old widespread disease. But this one node near the bowel is something new. Been advised to stick with Thalidomide for time being. Might hear if I've been approved for Lenalidomide when I see them on Wednesday but it may take longer. Allogenic transplant has been brought to the table again but with all these infections...not sure.

Thank you for explaining the regime to me. I'm glad that it's not causing you too many problems. I do find what you say about the Dex very interesting and I'm sorry that it makes you feel that way. But I honestly love it on the whole haha. Really gives me a lift! 

I have had the metachloprimide before. That also worked quite well for me. But I've kind of stuck with Ondansetron as my 'go to' it's interesting how drugs work differently for different people.

I struggled with migraines in my teens these always started with aura. In my early 20's I unfortunately got them again with encephalitis and the auras could last for days! Now I will just occasionally get them. Never with pain just the aura. Will last about an hour max. Saying that,  I can then have some pain at the back of the eye for the next couple of days. Seems to be related to anaemia for me. But also just accessive inflammation in the body when I'm unwell I think. You might need to be resting a little more Sarah! 

I know it's hard when you have lumps externally. Obsessing in the mirror to see if it's reduced in size, even just  a little bit. It can drive you nuts! But just because you can't see any changes doesn't mean changes aren't going on and it can take time for the changes to be visible and all the associated inflammation to calm down. Going by my own experience anyway. I hope the counselling helps though.

Definitely good to 'get out of your head' and if work helps you do that. That's great. As long as it's not causing you too much stress though. For me it's seeing people, gardening and being creative :) 

It's lovely to hear I can be a comfort Sarah. Just give me a shout when you need. 

Hope you're being able to enjoy the continued great weather!!

Si 
 

Hey Si,

Thanks for your message. How are you doing? I am so sorry to hear about the new lesion.  Is it making you feel unwell? 

At least the beautiful weather and all the trees and flowers make being under the weather a bit more bearable.

Did you get any news about the Lenalidomide? 

I saw the consultant yesterday who said we'd press on with another round of chemo and then do a PET scan.

Last time he saw me he mentioned that he had approached the "panel' (NICE I assume ) to argue my case for Car-T therapy as 2nd line treatment. Sadly, he told me yesterday that it had not been approved because ' there is no evidence that it works for PBL'. Of course there isn't - no-one ever does trials for PBL. Presumably, they can't put together a big enough cohort and there are more common cancers for researchers to study. It's frustrating though that we might not get cutting edge treatments for lack of evidence when there are so few options anyway and they might learn something from us. I think there might be a funding issue too.....It's very expensive. That said I feel I need to pursue it...

Has your consultant ever mentioned it?

I think there are only 3 hospitals that offer it Manchester, Birmingham and UCL.

I have tried attached a couple of links from the NICE website but it doesn't seem possible in this Cancer Chat format ... details below I hope you can find them!

The approval was for Diffuse Large B Cell Lymhoma.

The first article is 26 January 2023 " More than 400 hundred people set to benefit after NICE approves ground-breaking Car-T therapy  to treat aggressive form of blood cancer.

The second is a series of information pages giving a lot of detail about all aspects of it:

June 7 2023 Axicabtagene ciloleucal for treating relapsed or refractory diffuse large b cell lymphoma after first line chemoimmunotherapy

Interestingly I did read some studies about the use of Car-T for PBL. I am going to look for them. I wonder if it's possible to appeal the decision or at least have it a third line option?

I'd really welcome your thoughts and input on this Si.

As always I look forward to hearing from you.

Sarah

Hey Sarah

i am SO sorry not to get back to you sooner. I think because the website has had a revamp I didn’t get the usual email notification that you had messaged and to be honest wouldn’t have come on here otherwise! 

Anyway I’ve seen now which is good. I’ll follow up with a proper response tomorrow. Hope you’re doing okay. Interesting points of discussion in your message. 

Hope you’re enjoying the slightly cooler weather?! 
Simon

Hey Si, 

SO nice to hear from you. I was beginning to be a bit worried. I look forward to hearing more from you later! :)

Sarah

Hi Sarah 

I’m back in hospital again with yet another infection I think. It’s my lungs again. After a CT yesterday. They’ve decided to do yet another bronchoscopy today! Only once have I  found this procedure to be useful/successful. but you never know! 

I started the Lenalidomide nearly 2 weeks ago with the Dex. Which is good. But because I’m so immunosuppressed at the moment they have stopped the Len for the past couple of days and omitted my last weekly Dex dose. Which is quite frustrating and means I can’t really judge if it’s yet effective. 

Aside from all that! I was home for a month which was great! Energy levels weren’t fantastic initially but far improved once I started the steroids! Did manage to achieve quite a few things at home and in the garden. As you say it was a lovely time to be back. Good weather, lots going on in the garden and with wildlife. So was much enjoyed.  

How did your first round of the new regime go? Do you mind me asking what your main bloods are like (FBC) on average? Are things holding steady? Mine are generally depleted currently which will be a result of a combination of things I think.

I have asked my current consult about Car-T a while ago. He quite bluntly told me that I wouldn’t be eligible and to get it out of my head! At least your consultant seems more open minded to pursue it but then maybe mine had already tried to get funding in the past.

No, I think it would be extremely difficult to get on any trial in our situation. Because it’s so rare I don’t think they’d get enough money back from their investment. The gains wouldn’t be as great as to investing money into something like Myeloma which would reach more people. . Being HIV positive doesn’t help me either- I fall into an even smaller sub-group. Sometimes the drug companies will offer therapies on compassionate terms though.

My understanding is there are Car-T drugs available for myeloma patients now? Although a complete medical novice It would make sense that the therapy  would also be effective for PBL patients as myeloma /plasma cells and plasmablasts share the same ‘target’ markers. BCMA in particular. 

I think they also made funding for DLBCL? But I’m not sure those Car-T therapies would be suitable for us. Firstly as we lack the CD20 marker on our plasmablasts.  
AlsoI’m not sure PBL comes under DLBCL anymore? as it was reclassified into its own group. I may be wrong on this? Seems to be a bit of confusion with health professionals. 
The science makes sense to me. I’d push to get it if you can find people to back you. I guess the best person to speak to about an appeal is your consultant. Another opinion wouldn’t hurt but you’ ust got one from my consultant haha. However he may think slightly differently if it wasn’t for the HIV not sure. If you want me to back you in anyway In your case I’m happy to. For myself. I thin allogenic transplant may be better as my immune system is so knackered might be right to start a fresh ??!

Haven’t read those articles yet but I will. When you starting the next round? 

Very best wishes 

Si

Hey Si, 

So happy to be back in contact with you again.

Really sorry to hear that you have another infection. I guess you must be feeling rough?

Bronchoscopy - I feel as a general principle you don't want to have any procedure with 'oscopy' at the end of the name. For 'oscopy' read very intrusive!

Before all this started an endoscopy was my most dreaded procedure. It was literally the first procedure I had to have. Ah, the irony.

I hope  your bronchoscopy was a success this time and they managed to get you on the right antibiotics (I assume?) so you can get back on your treatment quickly.

And so glad you got some time at home. It really does help the mood to be out in nature and in the sunshine ...... and just to have a bit of 'normalish' life.

It's been a very challenging 5 weeks for me. I've had 2 rounds of chemo and then had a follow up PET scan and met with the consultant on Wednesday. It wasn't good news. I had started with 5 tumours. While 2 of them had shrunk substantially, the other 3 had stayed the same or increased in size. So, now chemo is off the table and so is stem cell therapy because you prepare for that with chemo. It was a body blow. So, I am back on the dex and he wants me to start on lenalidomide in around 10 days time.

(My only predisposing factor for getting PBL was a diagnosis in 2020 of MGUS (Monoclonal gammopathy of unknown significance ..... apparently we know the significance now). This condition can lead multiple myeloma in a few people - maybe that's the link)

So back to lenalidomide - I've seen studies where this has been the following combinations with promising results:

len + tislelizumab

len + bortezomib

Have you heard of either of these?  Has your consultant mentioned them? I am going to ask mine.

Car-T

Well your Dr tells it like it is! :) I spoke to mine about it again. He said to even begin I would need to find a Dr who was willing to do it at one of the 3 centres in the country where they do it. This is unlikely due to the lack of research.... None of his contacts in the Midlands were willing to do it. I asked him to ask around at a hospital in London.

I also mentioned to him that you had been taking thalidomide. At first he thought you weren't UK based but when I said you were, he couldn't figure out how you'd got it. He understood it wasn't licensed for lymphoma. Do you know if your consultant argued your condition was a kind of myeloma or cytoma and also which funding pathway he went down. Apparently you can argue the case on compassionate grounds for funding. Would you be able to ask your consultant about that?

I don't know how you'd feel about this, so feel free to say no, but if you were willing to let me know where you are being treated and the name of the consultant, it might be useful all round. But please, if you feel the slightest bit uncomfortable say no. Having this interaction on here is important to me and I don't want to do anything to jeopardise it.

So I really hope that you are starting to feel better. And thanks for taking the trouble to write such a long message when you aren't feeling well.

Take good care.

Sarah

Ah Si 

I've just had your problem. I just spent 40 mins typing you a mail and it's disappeared into the ether......

I spent send you a series of shorter messages!

Hey Sarah

The same goes :) To be honest I’ve felt a lot worse in the past!  and haven’t had one fever since I’ve been admitted. Which makes a change!  They  still want to keep me in though, Trying to get this CRP down at least a bit!!

Haha that’s a good shout actually. You’re right, any ‘oscopies’ aren’t generally too pleasant! I didn’t like the idea of endoscopies either but I have had far worse procedures now. I could tell you my Top 10 for unpleasantness but it’s probably not wise just I’m case you need any of them! 

No results from Bronc yet.. somethings can take days to culture, others can take weeks. They switched to Meropenem (broad spectrum) and CRP does look to be beginning to fall again. 

I’m really sorry you didn’t get a complete response from the last regime Sarah. I’m sure that must have hit hard and yes I know this means a transplant will be off the table for the time being. Which is very frustrating. 

So you’re on the Len + Dex like me then.. well at least you know it shouldn’t make you feel too out of sorts. The Len shouldn’t be like that anyway. I know you haven’t been great on the steroids so far. 

Bortezomib- also another drug used in Myeloma I think. Can be used in combination but it can increase likelihood of neutropathy so I think he wanted to try without first. It was part of my VTD-PACE last summer and has caused some neuropathic issues with my feet.  Bortezomib used in a longer term therapy really could exacerbate it I guess, that may not be the case for everyone though. 

Tislelizumab looks pretty new doesn’t it.. some interesting case reports.  I can’t say much about this one. Would be very interested in what your consultant says about it or if you have any luck with hearing from that hospital in London.

I’m not sure how my consultant accessed Thalidomide. Or what pathway he went down, although I got the feeling it was actually fairly straight forward to get hold of. No patent and cheap. I’m sure he must have made the myeloma link. And I had already had Thalidomide as part of my VTD-PACE at another London hospital and he argued the first part of that- Valcade, Thalidamide and Dex may have been the part that the PBL was actually most responsive to. Resulting in  my previous remission. This time though it was planned to take the thal+dex for longer. 
I'm pretty sure In this instance it wasn’t a case of compassion as such as they’re both such old drugs. 

I’m potentially happy to disclose more information with you Sarah. I think it could be useful. I’m aware of the constrictions on the forum. I can’t outrightly go ahead with that though. I will have to email my CNS first to discuss it. She’s very good at getting back to me quickly but I know she will probably also have to check on it. 

Happy to keep exchanging the messages. I know they can be long but there is great value in it!

Take care :)  Si