[sachbarnesParticipant]

Hi all, on the topic of Antibody Testing, I read on the Blood Cancer UK forum that the one that is usually given is the Roche one. It has all the approvals and gives you an exact reading for the Covid Spike antibody instead of just negative/positive. You can get it privately from Lloyds Pharmacy online for £50, after filling out a few questions where a GP then reviews and approves. They can send a copy to your GP for your records as well. Link for anyone interested, has some further info on the test and numbers too, Here

I asked Myeloma UK specialist team and they said antibody testing is useful but only paints a partial picture, as the B/T cells are unmeasured. Personally we just wanted to know if dad had some, so found it worthwhile doing.

[pandaParticipant]

Dear Lilib,
Sorry you have also been having a low point. I hope that things are improving for you?

GD is only 20 moths old so we cannot explain why I cannot cuddle her or look after her. It’s rubbish.
Consultant has asked me in to see him on Friday so fingers crossed for positive things…

I hope you are okay and that you are both getting good support.

Very best
Panda

[lilibParticipant]

Thanks, Panda. We are getting through it (tougher for the patient than the supporter in this case.) Hope all goes well on Friday, and that you’ve got all your questions prepared to interrogate (!) the Consultant.

Poor you and poor granddaughter. Hope it’s not too long until you can work something out and be together.

Lili

[lilibParticipant]

Hi Panda,
Hope that everything went OK for you yesterday with the Consultant, and that you got answers to some of your questions.

Take care,

Lili

[pandaParticipant]

Hi Lili

Thanks for your message. I hope things are going okay your end.

I need a full body PET CT scan which is a radioactive scan. Apparently there are lymph nodes in my chest that are inflamed and they want to check if the cancer is moving outside of my bone. I guess also checking for Lymphoma. Apparently rare but you can have that and Myeloma at the same time, who knew? If they find something I will start chemo, if not then it’s watch and wait. Frustrating still not knowing yet either way and trying hard not to let my thoughts run riot!

I wonder if anyone else on here has both and what the scan is like?

Nice consultant though. I would also be a good candidate for Stem Cell Transplant when required so that’s good.
Saw GD yesterday outside. That was lovely. Have to be so careful though of any infections and Covid. Scary.

You take care too. x

• This reply was modified 3 years, 2 months ago by  panda.

[mulberryParticipant]

Myeloma outside the bone is called plasmacytoma. It’s good that your team are checking everything.
It’s rare to have myeloma and lymphoma but there is someone who comes into this forum who has this dual diagnosis.
If you haven’t found it already, I recommend Myeloma Crowd’s healthtree university for very comprehensive myeloma information, and the healthtree itself as a database where you can potentially liase with other people with myeloma who share your presentations, and see which treatments worked for them.
Glad that you got to spend some time with your GD.

[pandaParticipant]

Dear Mulberry,

Thanks for that. Urgh I really hope it’s not that as well. I do feel the consultant is being pretty thorough. I am wondering what else could be causing the inflamed lymph nodes. My chest bone area was really tender when he pressed it and am having some general chest pain but no breathlessness thankfully. Still able to exercise, thankfully.

Hope all is okay with you?
Very best
Panda

[mulberryParticipant]

Hi Panda, it’s normal to think the worst and to go through all the ‘what ifs’. There are many common presentations for myeloma, and many unusual ones- one of many reasons why “multiple” myeloma is an appropriate name. It’s good that your odd symptoms are being investigated. Mine weren’t, and added to the stress of the myeloma diagnosis. I had an odd feeling in my throat, which was ignored and then viewed as psychosomatic (even though I’d mentioned it right at the start), which turned out to be Hashimotos thryoidosis, an autoimmune problem, and thyroid nodules which needed surgery. I had to make such a fuss to get investigated and followed up, then all of a sudden the hospital wanted to do surgery ASAP, just as I was having a stem cell transplant.
I suspect the 2 diagnoses were linked in that the inflammatory processes going on in my body may have driven both.
Now, 27 months after surgery, I tell my consultant that I feel like a fraudulent myeloma patient. I guess I am slightly fatigued, but that really is my only symptom. My blood tests still show some damage to my bone marrow, but that doesn’t impact on my absolutely fine quality of life. I really hadn’t imagined this would be possible at diagnosis, I had imagined things as more of a slippery slope & permanent ill health.
I hope that you are able to find some distractions over this Bank Holiday. One day you will realise that you hadn’t thought about myeloma for a while, and doing activities helps with this.

[paulapurpleParticipant]

Hi Panda,
I’m the person Mulberry was talking about. I had a dual diagnosis of Non Hodgkin’s Lymphoma and Myeloma, so yes you can have both at the same time! It started with me going to my GP as my right eyeball appeared to be moving forward. After investigations by Opthamology, and a biopsy of the ‘lump’ behind, I was then referred to Haematology as NHL was diagnosed. I had a PETscan which showed that the NHL was isolated to my right eye and a bone marrow biopsy. The PET scan showed that the NHL was restricted to just the one tumour behind my eye, a rare place to have it, but nowhere else, however the bone marrow biopsy showed that not only did I have NHL, I also had Myeloma. The Tumour was zapped with radiotherapy, which thankfully shrunk it. I then went on to have chemo for Myeloma. To cut a long story short, I had three lines of therapy, which didn’t work and a FISH test to see if I had any dodgy genetics, which I didn’t. They were at loss as to what to do and initially were just going to go ahead with Stem Cell Transplant to see if that worked. I had my cells harvested and while this was going on the consultant got a specialist pathologist to look at my bloods and bone marrow biopsies. They found that I had CD20 (a lymphoma cancer protein) attached to my Myeloma cells and this was blocking any Myeloma chemo getting through. In other words the NHL and the Myeloma had mutated together. The consultant rang round the country to see if anyone else had come across this but no one had so it appears that I am unique in that respect. He discussed my case with several specialists and the consensus was that they would try Retuximab (which targets CD20) and Bendamustine, which is a chemo drug used against both Myeloma and NHL. I had 6 months of it and it worked getting my levels low enough for a SCT. Two years after I was initially diagnosed I had my SCT. They did it the ‘Lymphoma way’ rather than the Myeloma way as the consensus was this was the best approach. (It just means 6 days of chemo then the Melphelan at a slightly reduced rate). I’m in remission now (2 and 1/2 years) although I’ve had a few infections this last 6 months and my appointment is due in two weeks so we shall see what the bloods say then.
You asked about a PETscan. It’s like a CT scan rather than an MRI, but you have some radioactive substance injected into a vein about an hour before you have the scan. This makes your scan light up in bright colours! It allows then to see if there are any areas of concern much better than a CTscan. It’s really expensive so not all hospitals have one. I had to go to a hospital an hour away from me.
Good luck with it all and let me know how it goes.
Regards
Paula

[pandaParticipant]

Dear Paula,

Wow, that is a lot to deal with! I am so glad that you are in remission and that the treatment worked eventually and that you have a great consultant.

So far I have confirmed Myeloma via the bone marrow biopsy. Not all the FISH results are in yet. They initially thought ( whilst my consultant was away) that it was a lesion on my chest but a closer inspection revealed the enlarged lymph nodes. It is painful in that area and am also getting acid refulx which may or may not be related and the lesion they found is on T6 on the spine sort of opposite the sternum.

Just have to be patient and wait and see.

Thanks for telling me your journey and I am so sorry that you have had to deal with both NHL and Myeloma. Thanks for the info about the scan. I was thinking i might glow in the dark that night! Are you able to have a look at the scan as well?

Will the scan detect other cancer cells do you know or just Myeloma ones?

I should have asked him more questions but it’s hard trying to take everything in and then after you think of them.

I hope you are okay. Thanks so much for getting back to me, very much appreciated.

Warm wishes
Dani

[paulapurpleParticipant]

Dear Panda,

The PETScan will show up any Myeloma lesions and any areas of Lymphona. It will give them a better picture of the lymph nodes on your chest and any others you might have elsewhere. It is really rare to have both so if you have you will be joining an exclusive club, although I appear to be the only one where they have mutated together.
They will send the results of the PETScan through to your consultant, mine only took a couple of days. My consultant showed me the scan; it’s multicoloured so they can instantly see any problem areas.
Let me know how you get on.

Paula

[pandaParticipant]

Dear Paula,
Thanks for that information and I am sorry you are in such an exclusive club. It looks like I have to wait until sometime next week for the scan as they have a backlog.

I think I have been slightly in denial that I have cancer but it has just started to sink in. I know there are a lot of treatments that are good but as I live alone I am rather scared of how I will cope. My kids are not really in a position to help me and other relatives live abroad. I guess I need to talk to Macmillan about all of that.

I may not need treatment just yet fingers crossed, depends on the this PET scan.

I will let you know, thanks.

I hope that you are having a good week.

Very best
Panda

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