[tmcParticipant]

MM joined our family in 2004. It was a very nasty and unwelcome quest. We didn't invite it and did everything to make it leave. It arrived with a gift of a tumour. 30 days of radiation dealth with that and a trip to the bone bank and hardware store and a terrific surgeon soon had us back on our feet. A slight stoop and walking cane made us look a lot older than our 55 years.<br />
Now to banish the guest. A stem cell transplant stopped it invading our lives further but didn't remove it.Next try, a Velcade trial;another halt but not banished. Luckily in March 2008 the Revlimid trial allowed us to join and we didn't have to pay the $8600 per month price tag.<br />
1st cycle and MM had become undetectable, our body guest had been beaten into submission. <br />
52 cycles later and we are lulled into complacency. We are three weeks on and one week off. The week off allows the nurse to visit and inject neupogen and the courier to deliver Revlimid to the house.A quick blood test to say all is well and continue on the Rev and Dex until next month, how wonderful us that.<br />
March 2012 Horrors it has returned. MM is back and high enough to qualify us for another trial.A Phase 3 pomalidomide with dex A Phase 1 AKT inhibitor with Velcade and dex or treatment of Rev Dex and Velcade.<br />
We are only on Duragesic patches 175 every other day all meds have been stopped until we qualify for a trial.The pain is building the fatigue and depression are climbing.More pain meds every 6 hours to help until our midnight MRI and bone marrow biopsie plus bllod test give some results.<br />
This is the first time I have felt the need to share. We do not live inh the UK now but our family are there.It is hard to share long distance. We have really been kicked back by the return of our very nast body guest.<br />
I feel the burden of gloom and stress falling to the ground just by writting this. Funny how I can send this to the MM group but can not share with family so far away. You are such a wonderful group of supporters and I am sorry to burden you.

[HelenParticipant]

Hi ?
You are not burdening us with anything. Just spreading out the load to make it easier to carry.
It must be hard to bear after all this time on the revlimid, and families are not easy to share the anxiety with either, we don't want to hurt them or make extra demands, that's why I like this site too. Just have to keep plodding on and hoping. Chin up and hang on in there:-)
Helen

[brochoParticipant]

Hi tmc? as Helen said you are not burdening anyone we are all here for each other and most of us will need to let it out sometimes . I can understand a little of how you feel as since my diagnosis 5 and a half years ago I have been on every possible treatment since my sct All have failed to work for more than the shortest time and now I have no options left , unlike you I wont be eligible for a trial as I am a non-secretor and therefore useless for trial purposes as they would be unable to measure progress What I cant understand is them stopping or not sorting out your pain medication Has radiotherapy been suggested for pain relief? To have to live with constant pain is a miserable life , take 160mg Oxycontin slow release morphine twice a day and Severadoil or liquid Oxycontin for breakthrough pain Luckily my doctors always check my pain and sort it out regardless of trial protocols. I hope you get some positive news very soon waiting is so hard isnt it. Stay strong and come on here when you need to there are so many lovely people who understand what you are going through and would like to help love Bridget ps please tell us your name it feels rude to call you tmc

[HelenParticipant]

Hi Bridget how are you now?
Love helen

[brochoParticipant]

Hi Helen this week has certainly been better than last !! I am coming to terms with the situationbut at the same time there are some questions I need to ask my doctors about possible treatments. I was thinking tonight that it would actually be easier , in some ways, if I were less aware about mm and the implications of various treatments , we they do say ignorance is bliss!! After all the heavy duty treatment over the last 4 years I know my body cant tolerate the toxic treatments which would sort out this mm once and for all , I have known that buying some time was my best hope for a long time now so the news wasnt a total surprise( still didnt like hearing it though!!) I have complete faith in the docs at UCH though so I am sure if there is something suitable for me they will find it For now I will just carry on as normal the pain isnt too bad and I am just hoping the radiotherapy has sorted out the spinal tumourWhilst I wont be taking up bungee jumping I will get on with things as it does your head in when you are afraid to do anything for fear of being paralysed This might make you smile –it was like an epsode of casualty here earlier! I opened the door to find my eleven year old grandson with a face covered in blood crying and his mum was crying even more He had fallen and knocked 2 teeth out but clever boy knew to pick the tooth up and take it home Off to A and E we went , one upset boy and one daughter liable to pass out at the sight of blood!! What fun ! After 5 hours his tooth was back in and held by wires and he was much happier, the doctor was brilliant with him As we were talking to the doctor my lovely daughter was a funny shade of green and got the doctor worried till Tamzin told her it was because she hadnt eaten ! I wanted to giggle but I dont know how a child of mine can be such a wimp They think I am hard as nails I just hope she realises that sympathy doesnt always help kids deal with stuff like that and not having eaten for a few hours is not life threatening! Sorry Helen that was a bit of a ramble must be cracking up! Hope things are good for you love Bridget x

[HelenParticipant]

Hi Bridget you just ramble away …..i like it…. And i don't do face book, promised the kids i wouldn't interfere with their domain a few years ago it's a bit limiting now though… Maybe i should try tweeting…. Anyway i'm rambling now…… Its catching…!
…too much knowledge…. Well it's a double edged sword isn't it? It means you make informed decisions but maybe you have more anxiety in the process and also never relax about it? Equally you can use your time effectively because you have a good grip on the reality of the situation and can be quite pragmatic.
I've been afflicted with a 'mild' pneumonia recently which has brought me up sharp, having never had a days illness in my life until a year ago when all this started and it has floored me. Still I'm better this weekend and hope to continue to improve.
Something I meant to ask a while ago was when you became a non secretor or was it always? I'm described as an 'oligo' as all my blood results were low but bmb showed 50-60% infiltrate.
Has your young casualty got to go to the dental hospital for follow up or just his dentist?
Love Helen

[brochoParticipant]

Hi Helen I know what you mean about facebook I dont think I could handle tweeting just cant get my head around it somehow!! I hope you shake off the pneumonia very soon it makes you feel wretched doesnt it Like you I was never ill till myeloma reared its ugly head but I have had pneumonia twice in the last few years I suppose chemo is as much to blame as mm though The risk of pneumonia is one of the reasons I cant have high dose chemo like melphalan Initially my bloods seemed fine but the levels were always low after my sct so I think thats when it changed The doctors finally admitted I was a non- secretor a couple of years ago after trying to use the free light chain blood testwhich wasnt much help In a way I am lucky as my relapses have all been with tumours rather than organ failure so not too much damage done once they realise. I havent heard the term oligo before though, you learn something new every day!! Are your doctors good at listening to how you feel as well as test results? Mine are great as they ask if there is any new pain or symptoms so if test results are iffy they begin investigating straight away I am the sort of patient who likes to be involved rather than just told what to do ( thanks to having a daughter with cystic fibrosis — pushiest mums ever!!) Poor George is likely to need root canal work done at some point in the future but the hospital doesnt actuall do follow up treatment you have to go to your own dentistAs long as we can stop it getting infected though anything else can be done at a much later date Which area of nursing did you work in Helen ? I am sure you must miss work , I do even after 5 years, I worked in Child Protection and I used to get so angry that myeloma stole my work from me Unfortunately my clients werent always pleased to see me , not like when a lovely nurse visits, so you need a certain level of fitness to keep safe being able to run like hell helps ! Haha love Bridget x

[HelenParticipant]

Hi Bridget
My docs are good and we have a great specialist nurse, I trust them and they seem to take aches and pains and bruises and infection seriously. Oligo just means little or scanty. I'm an orthopaedic and trauma nurse by training, and was a ward sister for 15 years followed by a move to research. I've been a clinical research nurse for the last 20 years first looking at the effects of new analgesics but the last 12 years have been working in mental health research. So i have a bit of an idea of how your work went, lots of mdt meetings!! I feel cheated by this disease, I thought I'd be leaving hospitals behind me in a couple of years time but now I find I'm going to be regularly attending -on the other side of the fence- for the rest of my days. I want to go back to work and see 40 years out but I'm still very tired. Over the pneumonia though thankfully, it's been a bit of a shock to the system.
Love Helen

[PerkymiteParticipant]

And I thought an "Oligo" was a very rich Russian:-D 😀

[PerkymiteParticipant]

Hi tmc (Welcome?) as the Girls have said "You ain't no burden" I enjoyed your slant on MM, the unwelcome guest well put.

Kindest regards – Vasbyte

David

[tmcParticipant]

Hi David Helen and Bridget
Thank you so much for replying to my note. I am not feeling so overwhelmed anymore. We have just heard we do not qualify for the pomalidomide trial as we have been off velcade for more than 6months.
We are waiting to hear about the AKT trial, it depends on the results of the bone marrow biopsie MRI etc
It'a amlost spring here and the robin came to the garden to day so I am feeling really up
I must apologize for not giving my name it is Teresa and my Husband Peter has had MM since 2004.We live in Toronto and attend Princess MArgaret Hospital more often that we want too.Our families are all in UK. My mother in law had MM 20 years ago and my aunt also had MM 10 years ago I so wish I had talked more to them. Maybe I should burden my family with all the nasty bits then if it continues to invade the family others will be more prepare?
Thank you again I was so fearful nobody would reply .

[webteamKeymaster]

Hello Teresa
My name is Stuart and I managed the website here at Myeloma UK. Something very strange happened to your post and all the other people's responses now appear as though they are coming from my account. I am trying to fix this at the moment. Please accept my apologies.

Regard
Stuart
Myeloma UK WebTeam

[mhnevillParticipant]

Hello Teresa

Glad Stuart clarified problem with Posts. I thought Moderator had taken against everyone's photo!!! Anyway, welcome to the site.

Don't know if I have got this right? You use "we" so do you and Peter both have MM? It seems very unlucky to have so much of it in your wider family. I guess most of us on here hadn't heard of it till we were diagnosed ourselves.

Sorry you have had such a bad time. Have you watched the various Webb Casts on Myeloma Foundation?

Hope they sort something out for you soon to give you something more to hope for.

Love.

Mavis

[mhnevillParticipant]

Hi Bridget

You sound as if you have had more fun and games. As if you don't spend enough time at Hospitals! Glad to hear your grandson seems to have saved his teeth. It is a big thing.

Glad it sounds as if you are keeping the pain at bay. I know it would be a bit uncomfortable but couldn't they give you some modern version of a back board to reduce the risk of damage to your spinal column? Can't think this is the first time they have come across it.

I know what you and Helen mean about missing work. Last sumer I retired for the third tme! No. 1 from my career in Community Education and 2. & 3. from two parishes as unpaid priest in charge. I went back to my last church yesterday to open the new disabled access. I think God must have a sense of humour! I parked in my usual place to take the shortest path (disabled slopes are always longer!) but it meant doing four steps – something I had always managed with the help of one of my crutches and the hand rail. Yesterday, because of my bad shoulder, I couldn't put pressure on hand rail, so ended up going the long way round anyway! At least I could say I had christened it before I prayed over it!!!

I rang up about dates for my xray survey and BM biopsy this morning. The Consultant was going to ring me. Three hours later her secretary said she couldn't find me on the system. It's all because I'm "Nevill" without an "e".

Happy days!

Love Mavis xxx

[HelenParticipant]

Hello Stuart
The posts are in the wrong order too
🙂
Helen

[Author]

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