[AmelieParticipant]

Hi Gill,

I have written to the myeloma uk nurse before and got an answer so I will do that again. They are very helpful and write very clearly and easy understandable.

I am thinking much about his way of coping with the disease. He is not denying that he is ill and he shares all informations, but he gives it very little space in his thoughts. That is obviously a good thing because it leaves him more energy to focuse on the things which are important to him.
The disadvantage about that attitude is of course that he doesn't make many demands to the doctors. Maybe he also doesn't want people around him to think too much about it. I don't know.
I also don't know of what help I could be at the consultation – I gave him articles on Revlimid maintenance and he showed them to the doctor, but he just said it was not good – and now one year after sct it is too late to start maintenance. 🙁
If and when he is going to have one more sct I will push more for a trial with Revlimid maintenance. I think he knows I will do everything for him, but I guess you are right and when the right moment comes I should offer him to go with him if he feels like.

All the best,
Amelie

[AmelieParticipant]

Thank you so much Carol – your experiences help me a lot!
It is really good to hear that the level can go up without it necessarily has to be a relapse. Hopefully John's will go down again. We will see.
Love
Amelie

[AmelieParticipant]

Last week John had his monthly blood test and meeting with the doctor. The M level is still rising – now it is more than 5, but the doctor still doesn't seem worried.

I am extremely worried. Has anyone else experienced a rising M level, which according to the doctore isn't serious?

[PerkymiteParticipant]

Hi Amelie, I am assuming you are referring to the Paraprotien number and if that is the case 5 is not that high, mine went up to 33!. Lately I note people referring to a Bone Myeloma measurement that is in percentages and again 5% would not appear to be high.

Every time I have talked to my Consultant about my Paraprotien measurement I have always had the answer, ?It is just not about Paraprotien(PP) in your blood, we take into consideration all sorts of things, like White Blood Cells etc.. to give us a picture of what is happening. So your PP could be going up but that is not necessarily worrying at this point in time.?

Try not to worry.

Kindest regards ? Vasbyte

David

[jmsmythParticipant]

Hi Amelia

I know it's difficult not to worry but franks protein went up from 21 to 30 (over months) and now down to 28. David is right, the doctors take a lot more into consideration. Frank hasn't had any treatment since he was diagnosed 5 years ago. Thank God.

Try and take it easy

Love Jean x

[AmelieParticipant]

Thank you very much both of you for your replies.

Apparently John had to squeeze the information out of the doctor who finally said, that John's case looks to be a normal case where the myeloma is back within 3 years from sct.

I know this isn't exactly bad compared to patients who are fighting with failed treatments, but I can't stop being disappointed. John's quality of life is so good – almost normal and he is working full time, so we had hoped he would be one of those who can wait ten years or more for the second sct. I know this sounds totally spoiled but it is how I feel.

On the other hand, David is right – it is not only about the paraprotein but also all the other numbers and they appear to be excellent, so maybe there is still a hope.

Jean, although Frank's paraprotein was 30 they didn't talk about a relapse?

Thanks again.
Love Amelie

[jmsmythParticipant]

Hi Amelie

Frank was diagnosed September 2006. I asked when he would start treatment and consultant said not yet and she has being saying that every two months since. She explained about the other tests and how they were stable and that MRI showed no abnormalities. I'm the one who asks the questions as Frank doesn't want to know. I now take a little recorder in with me and tape the consultation, put it on my lap top an listen again to make notes of what to ask next time. I know how you feel, I watch Frank like a hawk and worry myself sick at every little twitch. He has had to go to see doctor about tummy problems, she is referring him to a gastro man. I just pray that it is not Myeloma related.

I try to practice what I preach, but John feels good so try not to worry. Frank tells me that he knows his own body and will know when it's time to worry.
Take care
Love Jean. xx

[brochoParticipant]

Hi Amelie and Jean I was just thinking how hard it must be worrying about someone you care about but I thought it might help to hear the other side, the patients side It is a tricky one but I would not want Jeff to be hovering over me all the time .I already feel pretty useless because of all the things I can no longer do so I would feel even more useless if I didnt have some control as in knowing when I need to go to hospital Yes there are times when I put it off as long as possible because I cant face a stay in hospital but I always get there in the end when its really necessary As patients so much is taken out of our control by cancer so I value the ability to make my own decisions So although its hard try and trust John and Frank to make the right choices about treatment etc , when it comes down to it we all have a strong sense of self preservation The other thing that makes me feel worse is knowing how much my mum worries about me and when she gets over fussy with me this just adds to it Not sure if this makes any sensebut I hope it helps a little although I realise we are all different too love to you both Bridget x

[tomParticipant]

Hi Amelie and Jean and also Bridget

Well I concur with you Bridget I also feel well shall I say Close to useless when My young bride has done things that I was going to do at "The Week end" and when our three sons and daughter in laws seem to spend too much time looking watching over me I aint glass I wont break??? but if I do we will get it fixed 😎

Its Great to have your family and Friends Look out for you but its great to do it yourself:-D, and you are correct we all have that al do it later BUT we have that self preservation thing in us also 😎 Think Elaine (the young bride) knmows now when to leave me to it (bless her) and I also know that it aint easy for the other partner as I was on that side when Elaine was told she had breast cancer (think i was a worse fusser :-S ) so I do know both sides if that helps :-/ 😀

Love and Hugs to all those that worry and to those that tell you all not to worry, no matter what is said we wont,cant stop the worry? xxxx

[jmsmythParticipant]

Dear Bridget

You are a very wise woman. I understand what you say and I know you are right. it's just I'm scared that he might hurt himself. We have a massive tree in our garden and all the leaves where on the road. Frank went out to brush and bin them and I was out like a shot to take over from him. It makes a lot of sense what you say but on the other hand, I don't know if you are like it with Jeff, but Frank won't tell me anything. I only found out he was having tummy problems when he went out of the door to se dr. Sometimes I can see he is in pain but when I ask what is wrong I get "nothing". He thinks by not telling me I have nothing to worry about – but not the case my
imagination goes into over drive.

Thanks Bridget and Tom I will take what you say onboard.

Best wishes
Jean x

[brochoParticipant]

Hi Jean what I didnt say is I could not have got through the last five years without Jeffs support The thing about not telling you everything might be male pride but come to think of it there are times I dont mention little niggles. I really feel for you Jean as now my mum is very frail I feel totally useless but even with her I try and let her retain some independance and dignity, so I do understand how hard it must be for you The most important thing really is you and Frank are facing mm together, he must feel very loved Take care Jean love Bridget x

[AmelieParticipant]

Dear Bridget, thanks for your reply. I absolutely agree with you, that we should not be over fussy. As you might remember John is my old friend and not my husband. We see each other a couple of times a week and we don't always speak about myeloma. He knows that I am worried but one of the reasons I use this forum is that I don't want to talk too much to him about it.

I also like to ask questions here, because he doesn't get as much information as he should from the doctor and John is definitely not very good in squeezing it out of him.

John is working full time and he cuts the trees in the garden together with his 93 years old mom, so he manages everything practical himself except from carrying heavy stuff.
Love
Amelie

[AmelieParticipant]

Hi Jean!

So it means that Frank has been living with a paraprotein between 21 and 30 for 5 years without a sct?
This disease keeps surprising me… When John was diagnosed his paraprotein was 37 and 2 vertebraes were gone. How comes that 37 was very serious for John while Frank can live with 30 without treatment?
Thanks for writing – it is very informative.
Love
Amelie

[brochoParticipant]

Hi Amelie sorry if I was over generalising I did remember John is your friend but I was just giving the patients perspective. He certainly is a very active man and his mum too , obviously good genes in their family ! I am glad you can come on here for answers to some of your questions but it is hard to be specific when we each have our own myeloma map To answer your query about different responses to similiar paraprotein levels theses numbers only form part of the picture a good doctor looks at the whole patient , how well they feel , is there a new pain and also blood tests and biopsies all theses things denote when treatment needs to begin Take care love Bridget x

[jmsmythParticipant]

Hi Amelie

Frank was diagnosed early. He was being tested for other things when they found out it was MM. they did the BM and had the MRI. at that time I did not know anything about MM so didnt know what questions to ask. The MRI showed a crushed vertebrae but the consultant said that it was an old injury and not related to MM. His kidney function was good. She has said that it is not a case of IF he needs treatment but WHEN. His heamaglobin went up last time and protein down. She said light chains and calcium ok. We must have been in at the most 5 minutes. So he was so lucky that they found it early and monitored him. Have you read any of Teds posts? He is like Frank. I hope things go well for John.

Take care
Love Jean x

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