[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

[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

[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

[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.

[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

[pandaParticipant]

Dear Mulberry,
Thanks for your message, that was really helpful.

I am with a city hospital and the consultant has been working with Myeloma for some time so that’s reassuring. Never hurts to get a second opinion though I guess. I have faith in him but not in the hospital which doesn’t have a great reputation and I recently had some bad experiences there with a family member.

I wonder where the most experienced consultants are?

Thanks for all your advice.

Best wishes
Panda

[pandaParticipant]

Dear Lilib,
Thanks for your reply.

Yes it’s quite hard telling people plus it’s only just starting to sink in with me. Had a bit of a low point yesterday.

Take very good care.
Very best
Panda

[pandaParticipant]

Dear Lilib,

I am glad that my post has encouraged you to join this forum and I am really sorry to hear about your husband. I really hope his treatment goes well and his journey is a good one.

I’m not sure how organised I am ha,ha, my kids generally think of me as quite disorganised but I have decided to take the bull by the horns and face it full on. Gosh 10 types of medication, that’s a lot. I have just had a rough read through the online hand book for newly diagnosed people on here, have you seen that? It’s incredibly helpful but also I have just found it slightly terrifying with the prospect of facing any treatments alone and feeling like rubbish! I hope your husband is not having too many side effects.

It’s been a tricky time as my daughter only in her early twenties has just been diagnosed with Crohn’s after 5 months and a nightmare journey. I have no idea how to tell her about my Myeloma. My son is older and he knows and I have tried to reassure him that all will be well and there are great treatments out there.

How did you tell your kids?

My daughter is already immunocompromised ( double Jabbed as are all my family fortunately ) but terrified of Covid so now I am in a similar situation to her. I have been taking regular Covid tests due t my granddaughter.

Yes my son, his partner and daughter are my greatest risk! Questions to ask my consultant tomorrow about should I avoid being with them for the moment which will make me incredibly sad indeed. They cannot keep GD out of nursery as they both work full time. That’s the worst thing for me right now the prospect of not being able to spend time with them.

I wish your husband and your family a good journey.

Thanks so much for responding.

[pandaParticipant]

Dear Paula,
Thanks so much for your response. It’s really helpful.

I don’t actually know my blood levels yet until I talk to the consultant. The nurse gave me the diagnosis last week as the consultant was away and I had said I would like to know as soon as the results come in. I have a job interview on Weds for a flexible job working remotely so I am hoping I will get it but of course I have no real idea of what treatment means in terms of how rubbish you might feel and unable to work a bit further down the line!

The nurse implied I would be on watch and wait to start with but I think that depends on what they find with the lesions on the CT scan which I am now waiting for. there is sadly a lot of cancer in my family but as far as I know none with this before, not close relatives anyway.

Yes, I understand about the low immunity, that’s what is worrying more than anything at the moment with regards to Covid. I recently picked up a viral infection from my granddaughter which morphed into a chest infection 3 weeks down the line. It feels like it’s eventually going without antibiotics. Dr told me to keep a close eye on it.
Yes, my hospital are not keen to do antibody testing. I am wondering if there is a trusted private option as my son has said he would pay.

Sorry what is CNS? No I haven’t been given a booklet as they said they had run out!

Thanks so much for all of your information and the link. That is so helpful. Yes, a volunteer at Macmillan has sent me the email to get the financial advice. I will look into that and also join the Facebook page. Thanks for the heads up about treatment paths. What is VTD? I have yet to learn all the terminology associated with Myeloma. there’s a lot to get your head around.

I am so glad that you recovered from your chest infection and that you are doing well 4 years on. It’s very encouraging to hear about the effective treatments and the amazing people out there who are going strong after several years.

Thanks again for your time and advice. Much appreciated.

Very best
Panda

[pandaParticipant]

Dear Rosary,

Thanks so much for your reply. It is hugely appreciated.

Oh that’s interesting that you have had an antibody test. Maybe it depends where you are in the UK and what hospital? The nurse said “we have had a lot of enquiries about this lately. We don’t do it as it’s not in the government guidelines and if you have no antibodies there’s nothing we can do about it!! ” Not really a very friendly or helpful response. I would like to know either way so that I can evaluate my risk.

I don’t have the full picture yet they are still waiting for the genetic FISH results? Plus now need follow up CT scans to check out the lesions. Those two things will dictate next steps. It maybe wait and watch? Consultant has been away so it was the nurse who called to give me the diagnosis.

Good luck to you and once again thanks so much for your reply.

I hope that you are doing well and treatment has gone well.

I’m finding it a bit bewildering being alone and dealing with this.

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

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