[brochoParticipant]

Hi Chrissie so sorry Davids mm has gone up , no wonder you feel devastated Hopefully they will come up with the right combination to bring it down very soon All fingers and toes crossed for you.The trouble with all these anti-cancer drugs is they are so toxic we risk damaging our kidneys all the time I always worry that mine will just pack up one day as I have been on treatment of one sort or another for 4 years now It makes such a difference if you have a good relationship with the staff doesnt it I hope you get some better news very soon love to you both Bridget

[brochoParticipant]

Hi Chrissie so sorry , I didnt think about using the abbreviations and there is nothing worse when you are just getting used to the jargon. The induction chemo is the chemo used to lower the paraprotein levels to as low as possible before a stem cell transplant High dose steroids are usually given as well . The bmb is bone marrow biopsy , used to measure the level of myeloma in the marrow . I hope David can stay out of hospital I agree with him it is soul destroying to be stuck in a small room on your own and there really is no place like home especially when you are feeling rotten I am glad you have good friends to support you , its a pity your boys dont live nearer Try and spend some time doing ordinary things that have nothing to do with myeloma or hospitals and illness to give yourself a break as it is exhausting visiting someone in hospital let alone all the worry Tell David not to despair about treatments not working yet , they will find the right one Neither Velcade or Revlimid worked for me so I am now on Bendamusine and crossing my fingers it will work this time Love to you both Bridget

[brochoParticipant]

Hi Gina congratulations on your wedding I am glad it went well and you enjoyed Although your mum wasnt well enough to be there she must have been so proud of you. You look so beautiful in the photos and the children are gorgeous too, thank you for showing us . I am sure your mum loves looking at your photos . In looking after your mum at home you are giving her the most precious gift of all the time to spend with her family and a time for becoming even closer Your strength is amazing Gina but please look after you as well as such a tough time takes its toll lots of love to you and mum love Bridget x

[brochoParticipant]

I am with Helen 4th from the right is my guess love Bridget x

[brochoParticipant]

Hi Mvis that was a great brainwave! Your idea about recording our symptoms etc would be a good one perhaps our moderators will read your post and suggest something I am getting expert at doing the injections now and most of the time it doesnt hurt at all !!The other plus factor is I dont have any bruising when I do it whereas my tummy was black and blue when the nurses did them Oh dear I sound very smug dont I ! Hope you are well and enjoying this sunny weekend love Bridget x

[brochoParticipant]

Hi Chrissie it did take several months before I felt the benefit , I was diagnosed in August 2006 I then had induction chemo before having a stem cell transplant in April 2007 It took most of that year to feel well again and then I had to have a hip replacement as the steroids had destroyed my hip joint! I agree with Eve one day at a time helps get you through it. I understand how down David must feel as I hate having to go in to hospital but there are times when we have no choice Hopefully they will get his potassium levels sorted very soon and he should start to improve No wonder you are both exhausted though have you got family to support you? If you are offered help please take it even if it is hospital visiting to give you a break My e-mail address is bridget.rochfort@btinternet.com if you want to contact me Hang in there Chrissie it will get better Bridget

[brochoParticipant]

Hi Chrissie I know its awful when you first hear the words that tell you your loved one has myeloma At the moment I am sure everything seems very scary with all the drugs and terminology But things will get easier as he carries on with his treatment and you will see him looking and feeling better . It sounds as if his doctors are being cautious in giving him a lower dose of Lenalidomide which they must be to protect his kidneys Has he got a specialist nurse? If so perhaps you could have a chat with her or him . she will be up to speed with your husbands treatment and able to answer any questions you have. We all go through the Why Me? stage I am sure but there arent any answers to that question ! Life will get better for you both and it even becomes quite normal again Hi quality of life will get better too as the drugs take effect, I was very ill when first diagnosed and couldnt believe life could be good again but it is !!There are so many new treatments now which means we can look forward to many more years ahead Keep posting there are lots of people on this site whose partners have myeloma and I am sure they remember only too well how bad they felt at the beginning so that may help I hope your husband starts to feel better very soon Bridget

[brochoParticipant]

This just what I need ENERGISATION leaving ION Sorry I know we have had this before love Bridget x

[brochoParticipant]

Hi Wendy thankyou the article was very interesting . I dont have any pn symptoms at the moment but I will certainly mention this treatment next time I am in clinic love Bridget x

[brochoParticipant]

Hi Sue sorry I was convinced I had replied to your post the other day. Gaga! Sorry Michael is having more problems with his pn, it really is a horrible side-effect, I hope it eases off soon My mystery rash seems to be fading now and the doctors arent worried about it so I am ignoring it! The tiredness , I think Thalidomide is the culprit , is more of a problem but I am hoping that will get better with time Well at least life wiyh myeloma is never boring , something different everyday Tee-hee Hope you are both well love Bridget x

[brochoParticipant]

Hi Ted good to hear from you and very glad to hear you are well . I think we all get a little bit anxious about catching bugs at this time of year, I certainly do after having pneumonia twice! So heres to a winter of being as well we can and no coughs or colds !! love Bridget

[brochoParticipant]

Hi Stuart I have had similiar problems posting inappropriate words in the past and it does get frustrating so any changes you can make to the list would be great Thanks Bridget

[brochoParticipant]

Dear David I am so sorry for your loss To lose someone young and full of life seems very cruel and unfair. love Bridget x

[brochoParticipant]

Hi Gill I have been cracking up since reading Dais post and I will definitely check who is behind mme in future ! However since being on Revlimid I have been lumbered with squeaky bum syndrome so any tips to ease the embarrassment are very welcome , there are only so many times you can cough without giving the game away!My grandson thinks it is great fun and giggles non stop though . Seriously I was hoping it would be less of a problem once I was off Revlimid , my problem is more noise than smelly which makes it a bit better but still a nuisance love Bridget x where else would you find a topic like this! Haha

[brochoParticipant]

Hi Gill it sounds like you are well organised so try not to worry too much( easier said than done I know!) Have a wonderful time it will recharge your batteries Whats a bit of frostbite anyway haha! Safe journey love Bridget x

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