[sandie58Participant]

Hi everyone
Originally posted on the other site and this is my first follow up on this one. Have changed sign on name slightly, so not sure how this will appear.
Last time I posted I told you that mum (84) had been suffering with high protein levels for the past couple of years, but in the past few months the bad protein had increased enough for the consultant to request another full body scan (Bad protein now 21.6, and started at around 9 when we first started seeing Haematology a couple of years ago).
Just had the x-ray results back today and they think there may be a small lesion on her clavicle, but all other bones ok. However, her protein level has gone up slightly again and now the chief Consultant has told her that she definitely has full blown Myeloma. I guess we knew it may be coming and so both acted really calmly. My mum says she has had her life at 84 but of course I want her around for many more years. Because her kidneys are reasonable and her bone scans good the Consultant isn't going to decide anything for another three months when she will have another blood test done. If at that time things are still increasing he will do a bone marrow biopsy. Mum is rather worried about this as she has heard it is really painful. I would be grateful if anyone could tell me what this involves. He has already mentioned the chemo plan of MPT, so she knows it will be a pill treatment plan. I guess this is because of her age. I know she wouldn't want to cope with anything more radical at her age.
At least we will get Christmas in and a family wedding on New Years Eve, before they think of any treatment. She was worried that they may start it now.
I guess it's hard to think she has Myeloma as she is plump and looks really well. The only pains she gets are from her OA and she doesn't get any pain in her clavicle. Her haemoglobin was down at 6 in July as she had an ulcer bleed which put her in hospital (that happened two weeks after having a knee replacement). It's now reached 10.6 so almost normal again and the Consultant is reducing her iron medication. She gets tired but then again she is 84, and I get tired and I'm only 58! We're not worrying too much at this stage and mum helps by taking it all in her stride.
Last time I posted I told you that as I was getting a lot of bone pain, including ribs, I decided to go to Docs and get tested. It's been almost three weeks and still waiting for my results to come back. I know I'm probably being neurotic, but thought I may as well check as they say that so many people are undiagnosed for a long time. Will feel better when the results come back to say I'm clear (hopefully), just need to find out what my problems are caused by. Maybe just Osteo Arthritis as it runs in my family through my mums side.
My best wishes to everyone out there living and dealing with this disease. I hope you all have a very nice Christmas!
Sandie x

[donalbParticipant]

hi Sandie,

Just to let you know, my Dad was in much the same situation as your MuM,though he was 74 when his PP levels went from 6 to 24.

he didnt find the biopsy that painful. he was put on MPT, and didnt have any major side effects. his PP levels became undetectable after 4 months, so he was taken off the MPT. he just gets his blood checked every few months to keep an eye on his PP Levels. Thats them been undetectable for 4 months now. Fingers crossed.

Dont know the procedure, but I'd imagine you could ask the consultant if it is possible for the biopsy to be done under an aneasthetic.

All the best for Christmas

[PerkymiteParticipant]

84, what a lovely age. I wish your mum well and make sure she is treated really special at Christmas. 😀

kindest regards
David

[KWilsonParticipant]

Hope things progress well on the treatment journey.

xxxxxxxx

[brochoParticipant]

Hi Sandie hope things go well for your mum she sounds as if she is coping with it ok As for the biopsy it can be painful so your mum should ask to be sedated, I always do , then its just a bit sore for a couple of days. What a lovely time for a wedding hope the weather behaves Best wishes to your mum and I hope you get your results soon Bridget

[sandie58Participant]

Hi
Thanks so much for the info. I will tell my mum as I'm sure it will make her feel better. Seems strange that at the last appointment the head consultant finally said she now had Myeloma, but would wait for another three months before he decided on treatment. Doesn't bother my mum as at least she can have Christmas and the family wedding to look forward to before treatment. I'm thinking of a short cruise somewhere hot before the end of Feb. as she has always wanted to go on one. Trouble is she still has pain from her knee replacement so not sure she would cope with flight, and sailing from Southampton would be very cold in Feb….
We will ask the consultant about having an anaesthetic but I doubt they will do that at Harlow. Mum was traumatised when they did an endoscopy after her knee replacement as they didn't sedate her and she felt they were very rough. They were checking an ulcer which bled after the knee op. to make sure it wasn't caused by cancer, and then promptly lost the records so we never did find out. She said she would never have another endoscopy!!
Wonderful news about your dad and I hope his protein levels stay that way for a long long time.
I'm sure you will have a lovely Christmas.
Best wishes.
Sandie

[sandie58Participant]

Hi David
Thanks for your best wishes. Mum is 85 soon and we are taking her out for a family meal. Every year that passes is very precious as I lost my dad to cancer at 70 and my sister in her 40's.
We will make sure Christmas is a good one this year and the family wedding on New Years Eve with most of the family will be a one off as we don't all get together as we used to years ago.
Have a lovely Christmas.
Best wishes.
Sandie

[sandie58Participant]

Hi Bridget
I don't think I'll tell mum it will be too painful, although she's not daft and is expecting it. As long as she can be sedated. In fact I will insist that she is, although I guess you're not put right out??
I'm hoping it will be a really special wedding at a lovely venue. Not sure mum will be able to make it up the stairs to the actual ceremony as her knee is still preventing her doing a lot of steps. I'm hoping to go there before the wedding to try and ascertain any problems. Will be lovely for all the family to be there on New Years Eve as I doubt it will ever happen again. I am hoping that we don't get snow around that time as that would be awful.
Still haven't had my results and it's been 3 weeks now. Rang the docs again today and waiting for them to ring me back. When I spoke to them last Thursday they were still waiting for a report to come back. Seems an awfilly long time…
Have a lovely Christmas
Best wishes.
Sandie

[sandie58Participant]

Many thanks. Nothing will happen for 3 months anyway, so we'll face it when the time comes.

Have a lovely Christmas.
Best wishes.
Sandie

[GillParticipant]

Hi Sandie

I am glad that others have said about the biopsy as I am the wife of an mm person and so have no real idea, but I can say that I have seen Stephen's toes curl when he has to have them (he does not have sedation) so I think it is a good idea for your mum to be a bit woozy.

She sounds as though she is coping very well with having mm, but isn't it always the way the mm person seems to have the "OK then bring it on" attitude and us around them feel like headless chickens.

Hope everything goes well Gill

[sandie58Participant]

Hi Gill
I will insist that they give my mum sedation. I think she may refuse otherwise. Would I be able to stay with mum when she has it?
It's really strange, when the consultant told us both it definitely was Myeloma now, we were both really calm and just asked questions. I guess it wasn't a shock as it had been coming on over the past couple of years. I think calling it Myeloma doesn't make you think of the dreaded 'C' word. I was distraught when I found out my dad had cancer but he was only 70. I am hoping that with treatment mum will go on for many more years. I guess because mum is handling it so well and she feels and looks well too, it's hard to take in the fact that she has a blood disease. Perhaps that's why we are both just going with the flow at the moment.
Time to stress will be next year if she has to undergo treatment. She already takes a lot of medication for her blood pressure, heart/pulse rate etc., so we will have to chat with the consultant when the time comes to make sure none of the medication clashes.
Meanwhile, we'll have a good Christmas and I hope you are your husband have a great time too.
All the best.
Sandie

[jillsParticipant]

Hi Sandi,

My Mum had the biopsy and didn't have sedation, I was with her and it did involve quite a lot of digging about which she said wasn't so much painful as a very strange feeling. At the time she was plumper and this actually makes it more difficult as they need to get into the hip bone. However, I think sedation is a good idea if you are with her as it does make things more relaxed. She could also have a local anesthetic.
Another interesting point is that Mum was also on lot of medication for things like high blood pressure but when she started on the myeloma treatment we stopped all that (too many tablets and we couldn't manage it all!) Her blood pressure is now perfectly normal (better than mine in fact) without any medication.
Keep us informed and hope you have a good Christmas break,

Jill

[tomParticipant]

Hi Sandie

Sorry to read about your Mum:-(

Best wishes to you all

Tom xxx

[sandie58Participant]

Hi Jill
Definitely will ask for sedation. Mum is very 'plump' around her stomach and hip area so I guess they will have the same problem. Mum does have a heart murmer which is stable at present, and also she is on tablets to keep her pulse rate steady as well as tabs for high blood pressure. She sometimes ends up in hopsital when her pulse rate goes bananas, although the last time this happened was when she was on another tablet to improve her irritable bladder, and one of the side effects was the increased pulse rate so she had to come off it. She's also on tabs for cholesterol. We will just have to discuss all this when the time comes for treatment. Meanwhile she is feeling really well, just gets tired but then she does take co-codamol for osteo arthritis and that can make you sleepy as well as being 84 of course.
Can anyone out there tell me how they felt when diagnosed. Any pain or feeling ill? It's hard to take in as she doesn't appear to have any symptoms.
Today I went to the docs for the results of my blood tests. I didn't want to appear neurotic but when I started reading up on Myeloma I had several of the symptoms. Unexplained pain in ribs, pain in spine, top legs etc., along with infections that wouldn't clear up this year. I have just had the results back and everything is ok apart for a slightly grey area with regards to my protein levels. I asked the doc if the report quoted a number but it didn't. She is writing to my mums consultant and showing him the report to get his opinion. I'm not going to get worried (yet), as ' slightly grey' doesn't mean a lot. The results didn't surprise me. For some reason I was half expecting it. I know I have osteo arthritis already (58), and having a hip x-ray today as been getting pain in that area as well. I know people get MGUS and I guess my mum probably had that before she was diagnosed with Myeloma. Keeping my fingers crossed it will be nothing to worry about.
Have a great Christmas too.
Best wishes.
Sandie

[sandie58Participant]

Thanks for your best wishes Tom. Mum isn't letting the news bother her at present. We'll wait and see what the consultant decides in February.
Have just written my doctors follow up appointment results to Jill above. Not going to let the results bother me until I hear back from the Consultant. I guess if he wants to see me perhaps then I will start to worry.
All the best
Sandie

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