This topic contains 12 replies, has 8 voices, and was last updated by 
mhnevill 11 years, 1 month ago.
Hi Everyone,
I just thought i'd introduce myself – My name is Jo and I have only just found this forum and i'm so glad I did!
My Dad was diagnosed with Myeloma last year in October and he finished his chemo in July. He had a follow up appointment today and was told that the protein levels in his blood have gone up from 3 to 8…To be honest, I am not sure what these numbers mean and my Dad could not explain them to me either, but it looks as though he is going to have some more treatment starting again in November (depending on another follow up blood test in a month from now).
The treatment he had before gave him awful side effects (nerve damage in his feet so he can't walk properly, hearing loss, weight loss to name but a few) and he is almost 80 so this has been very tough for him.
I would be so grateful if anyone could shed any light on what the '3 to 8' numbers mean as we as a family have no idea. My Dad could not really hear and understand the Doctor he saw today. I am almost 400 miles away from my Dad and am finding the distance between us very upsetting at the moment – I wish I could be there more for him.
Thank you for listening! Jo x
Hi Jo, Sorry to hear about your Dad , and I hope things improve. I have had MM for 7 years but in my case its what is known as Smouldering MM which does not yet require any treatment, the para protein levels that were mentioned refer to the amount in the blood or urine, mine is 11 to 13 but MM is a very personal illness and you cant always compare other peoples results. Would it be possible for some one else to go with your Dad as its easier for two people to understand all the jargon. Other people will come on here shortly and give you much better advise that I have ,so keep looking . All the best .Ted
Hi Ted,
Thank you so much for your reply – it really means a lot as I don't have many people I can talk to about MM, and I hope you are doing OK – Smouldering MM sounds quite different to what my Dad is going though and I did not realise that MM can affect people in so many varied ways. I see what you mean about it being a very personal illness.
I've been on the phone to my Dad this evening and it seems as though the consultant who did the follow up appointment with him was a little concerned at the jump from 3 to 8 (it has only been 8 weeks since he finished his treatment).
He wants Dad to have another blood test in a month to monitor the para protein levels and only then can a decision be made regarding further treatment. He has been on Velcade and Dexamethasone, and is still having monthly infusions of Zometa for the damage in his pelvic & spine areas and since ending the treatment, he is feeling a lot better.
I suppose that being his daughter, I am nervous, scared and worried what the future holds at the moment because I had hoped that Dad would have some good quality time in remission, but the appointment did not bring us that news.
Thanks again for your reply! Jo.
Hi Jo, It does sound as though the consultant is keeping a close eye on things and that is good, as I said before I don't have much experience with the treatments and I am sure others will come along with practical advice. You must not give up there is a light at the end of the tunnel and I do hope your Dad gets into remission soon. Ted
Dear Jo,
A very crude response from me. When you have myeloma, one type of your plasma cells replicates and crowds out the good stuff. The most common way to measure this is via a test that weighs the levels of these so-called monoclonal cells or paraprotein in grams per litre(G/L). That's one of the reasons they take blood samples.
I think that all of us have had increasing levels: one of the aims that a consultant will have will be to find a way to lower or eradicate these levels. Some patients get them down to zero for a while – that's sometimes called a 'complete response.' Other patients do well for years on various levels. It partly depends on what happens to the rest of your bloods and body. Perhaps you can have a brief chat about this with Ellen the myeloma nurse who works for Myeloma UK. Her job is to talk to patients and carers on the phone, so don't hesitate – she's excellent at her job.
Best,
Eve
Hi Jo,
I don't really understand the numbers as there are so many variations of this nasty Myeloma, I guess what I do know is numbers going up isn't a good thing. But I what I do know is the distance. And the age of your dad. My dad lived a good 2.5hrs from me which also meant leaving behind my three young children and husband to be with him. It's hard when there are so many appointments that sometimes seem not to shed much light and you feel responsible for being there to understand it for them and also try to understand it all for yourself.
I hope the next line of treatment they offer your dad is better tolerated by him as it sounds like he had a rough time last time.
PM me if you want to chat as I know how hard it can be.
Tanya
Hi there
The pp numbers are a marker to measure how the condition is performing, 3 seems very low and an increase to 8 still seems low. I assume your dad hasn't had a transplant due to his age so they are going with medicines. It's hard to say what the numbers mean as they mean different things to different people. Is there any way someone could go to the appointments with your dad? It's so hard to take it all in and it helps if there's someone there to translate the wealth of information!
Sorry that's not much help but want to give a bit of support. I must be so hard being so far away 🙁
Vicki and Colin x
Hi I do agree with Vicky and Colin try to get some one to go with him, its not to do with how intelligent he is its more to do with the emotional part. We are lucky as I have my wife to go with me, is there a friend who could help. Ted
To each and every one of you who have replied, thank you so much!
Eve – I really appreciate your explanation of what the paraprotein levels mean, I can completely understand what you have said, many thanks and I hope you are doing OK.
Tanya – The distance between myself and my Dad is really hard at the moment as I want to do all I can for him. I have had a good long chat with my other half and we both know that when the time comes, I will leave for a while to be with my Dad and Mum. I also have 2 young children age 2 and 4, so leaving them will be very difficult as I have never been apart from either of them.
Vicki & Colin – I am holding on to the fact that an increase from 3 to 8 does still seem a low figure (now I fully understand what the numbers mean from the reply Eve gave!) and thank you so much for your support. My Dad has never had any problems with his kidney function either so that is another positive. However, his first symptom of MM was extremely bad back pain, and since ending his treatment in July, the pain has returned within the last couple of days. My gut feeling is that the MM is attacking his spine and pelvis again and I am so worried because seeing my Dad in agony before and after his diagnosis last year, was truly awful.
Ted – Thanks again for your replies. My Mum goes with my Dad to all his appointments but it is as if they don't want to know what the results and numbers mean. My Dad had prostate problems 12 years ago and knew absolutely everything there was to know about his condition but this time with the MM his thirst for knowledge has gone. Both my parents are very protective of me and maybe they do know more but are keeping it from me because I have young children and am so far away from them…I just don't know – It feels like such a difficult time at the moment. On a brighter note, we will all be seeing each other in 2 weeks time and I so hope Dad is well enough – The phone and Skype will have to do for the time being!
Thanks again for listening! All the best, Jo x
Hi Jo, What a difficult situation you are in and we all on here try to understand, in my case, though I don't try to compare with your Dads situation ,I am 82 and one of my daughters lives 400 miles away we try not to tell her too much as she will worry and what use is that as she cant help anyway, so there is your parents thinking ,though it wont help you. I know a few people who don't really want to know the full details of there situation, but we are all different and some want the full and some times awful truth. Just keep posting and you will at least have some one to talk to. Good luck with your visit ,Ted
Hi Jo
Sorry am late and also sorry to hear about your dad, I wish your Dad a smooth trip through to remission.
Take Care
Tom Onwards and Upwards x
Hi Jo.
Welcome to the forum in sad circumstances. I'm on my Dex part of my cycle so I apologise in advance if I start to ramble on. hmmm think I've started rambling already.
My understanding of the paraprotein levels is that it's a measure of how active the disease is. A high PP number does mean instant treatment unless there are other symptoms. Ie bone damage, lesions, kidney problems etc. however a change in PP levels sometime warrants action. Although a rise from from 3 to 8 doesn't sound much it is a 266% rise and is an early indication of your Dad relapsing. I personally started out with PPs of 49 and only ever been as low as 12 for 1 cycle before settling down for a while in the high teens. My latest results mmmm no my last but one test came back and my PPs were up to 26 I haven't got my last test results yet! Must ring in and find them out. My consultant said the drugs I'm on are probably failing so it's back again to the already sparse drug cupboard for me.
Ok I'm rambling now!
Oh Velcade is known to have a short term effect on MM in some people or no effect in my case, I've been on various chemo therapies for nearly 2 years now! that's a lot of drugs I've pumped into my body.
Everyday is a gift
Cherish it
Andy x
Hi Jo
Sorry you have had to join us and sorry your Dad had such a bad experience of the drugs. I wonder they didn't suggest lowering the dose as he has so much pain in his feet.
Like the others, your Dad's numbers still seem very low. Let's hope the next set of blood tests don't show any further rise.
About your Dad's back pain (I have lots of problems with that because of previous arthritis!) it is possible for him to ask for an X-ray of his back to see if the pain is caused by active MM or just degenerative processes. This is what mine turned out to be! The pain continues but my mind was at rest!
You don't say what age your dad is. As you have young children I suspect he is not so old. Have h
They talked about a SCT? Mind you, as I have just said on anther post it isn't the only way to go. Depends on lots of factors.
Lots of love. My only daughter is in Luxembourg so I know all the difficulties of distance, but the phone is a marvellous thing.
Mavis x
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