[jeff605Participant]

Hi, susie, Some time ago I started a thread on lack of information being given by consultants. It became obvious from the lengthy correspondence on the subject that this was very variable across the country, with some hospitals being worse than others. At Leics. you seemed to have to drag information out of some of the consultants, almost as if it’s non of your business to know ! Things do seem to have improved at Leics. with results being shown and discussed if you want them. But, as you say, Susie, exasperating and frustrating.
Jeff

[susieParticipant]

Hi All

I had the end of cycle 5 hospital appointment today and saw a very nice registrar. Paraproteins are 3 which I was a bit disappointed with I was just so hoping they’d be undetectable. Never mind treatment has done me well and I shouldn’t grumble at numbers.

I did bring up my concerns about the drug inconsistent’s and was told it did appear there had been mistakes. It was only the supporting drugs the myeloma drugs were always correct.

I asked what happens at the end of cycle 6, my last one. I shall be randomised onto either maintenance Revlamid or nothing. There was no mention of SCT, I suppose because of my age, I shall be 70 next month. I’m quite glad as I had already made my mind up I wouldn’t go down that road.

I can’t believe that I finally have the end of treatment in sight. It’s been a tough time. I live on my own so my off days have been hard to cope with but I’m there. I hope I stay there for as long as possible.

My best wishes to everyone

susie

[mhnevillParticipant]

Hi Susie

I’m glad for you that the end of your treatment is in sight and, who knows, you may yet reach undetectable PP by the end.

I am now nearly three years post CDT and still doing well, apart from bone pain. I am so glad I didn’t go down the SCt route. I have had no maintenance drugs, just four weekly ZOMETA infusions. I saw my Consultant last week and he agrees with me that the infusions have no doubt had an anti myeloma effect on me as well as keeping breaks at bay.

I am just coming up to my 70th which I didn’t expect to see when I was diagnosed in 2010.

All best wishes to you.

Love Mavis x

[jeff605Participant]

Hi, Susie, really good news, so pleased for you. I’m in my 3rd lot of chemo sessions, now on Revlimid and Dex, which seem to be doing the job, p/ps hovering around 4.5 to 7, despite several health upsets. I’m hoping for a further drop now other health problems seem to be settling down. I’m 76, was diagnosed way back in 2009, smouldered for some 3 1/2 years. Although at the time I was pretty fit, I decided after research against SCT, and still think it was the right decision. I’m also on monthly Zometa.
Fingers crossed for you, zero p/ps in sight must be a great feeling. I sympathise with you on going through all the ups and downs on your own, it’s hard at times, isn’t it ?
All the best for the future, Jeff

[DorothyParticipant]

Hi Susie and Jeff
Good news from both. I have jut had my stem cells harvested but have some spine involvement so not sure if and when transplant may take place
Love and prayers for all

Dorothy

[susieParticipant]

Mavis, Thanks for your reply. If I can do as well as you have I shall be happy. I have seen on Myeloma Beacon there are some doctors in the States that don’t agree with SCT and say in the future it won’t be used as standard treatment. We have to see if they are right.

Jeff, Thank you. It is indeed a great feeling. I remember when I started this treatment it hit me so hard I thought about stopping it coz I felt so ill. I had been given no information about side effects by the hospital and I felt so alone despite my family and friends support. It was this forum and the info nurses at M UK that helped me persevere, so I just try to let others on here starting on their journey that it can be done. Jeff may I ask where you did your SCT research ?

Best wishes to all

susie

[DorothyParticipant]

Its good that we can support each other
Keep getting better friends

Dorothy

[amandaParticipant]

Thank you Dorothy.  That was a kind thought you put out to everyone, you keep well too and hope that you are getting plenty of support. Amanda.

[jeff605Participant]

Susie, Regarding research about SCT, it was partly on here, talking to the consultants – I see anyone of five at the clinics, some are more helpful and easy to talk to than others – talking to the Myeloma specialist nurse, and one or two fellow Myeloma patients that have had SCTs. The overall impression I formed was that it was a bit too arduous for me, and with other family health problems would have been difficult to manage. As things have turned out over the last eighteen months or so it was definitely the right decision, life hasn’t been to kind to us as a family over this time, I’ve certainly been kept busy ! However, really it’s just a matter of get up and get on with it, as far as I am concerned. I have written before that I have been very fortunate that any side effects have been pretty minor, which has been a real bonus.
I hope things continue to go well for you Susie, I am still amazed that I am here to enjoy perhaps most of all three lovely great grand daughters, they make it all worthwhile.
Best wishes to all Jeff

[susieParticipant]

Thanks Jeff. None of us know what the future holds and I don’t think any different about an SCT. Were you on any maintenance drugs these past eighteen months then.

I recently posted that the plasmacytoma on my spine had reduced significantly, which my consultant told me at my Christmas eve appoint. At my last appointment in Jan I asked for a printout of the MRI report. It states the tumour had reduced only marginally, so why the consultant told me what he did I don’t know, but I am both very disappointed and cross. I will discuss it at next appointment in Feb, but I wont be surprised if it will be down the radiotherapy route, coz I’m on my last cycle and I can’t see it can be left, its a large tumour tho its not causing any pain at the moment.

Best wishes to all

susie

[jeff605Participant]

Hi Susie, I’m on Zometa monthly with no side effects that I know of. I read up on this drug on the internet, the only serious side effect is the ostiochronosis ( ? ) of the jaw, and this is so unlikely in % terms that I decided to go for it, benefits outweighing the risks. Make sure your teeth are in good condition and any work needed is carried out before starting the Zometa, if you need any extractions or such doing you need to come off Zometa for 3 months, a long time to have a toothache !! I wasn’t warned about this before starting Zometa, and dread teeth problems happening. I get occasional leg cramps, hadn’t tied it done to the Dex which is interesting. It’s difficult to explain to someone who’s not going through all this alone exactly how the bad times happen, sometimes I wake up with it, sometimes the littlest thing can set it off, I just get busy doing something, or if it’s in the evening go to bed early !! I try very hard not to feel sorry for myself knowing how much worse others are suffering with their Myeloma, some days it doesn’t work and I feel quite ashamed of myself.
Hope all goes well with the Zometa, regards Jeff

[DorothyParticipant]

Hi All
There are days when we all feel the need for some support. Little things can set us off but little things can also lift us up, a kind word, a phone call, a smile, a memory. Jeff you should never feel ashamed of yourself as we all have down days no need to beat ourselves up, just pick ourselves up. The treatment itself can make us feel poorly or tired. Those of us going through treatment know the ups and downs but we have a hope and a light at the end of the tunnel. Just take one day at a time, step by step. We are here for each other never alone if we can help it
Bless you
Dorothy

[jeff605Participant]

Dorothy, you post is one of the little things that lift one up, thank you for the support and words of wisdom. There has been and are so many bad health things going on in my family that taking each day as it comes along has long been my mantra. Thanks again for the kind thoughts, they help.
Best wishes to all, Jeff

[andygParticipant]

Hi Susie.

Don’t get hung up on the the numbers too much it can spoil what you have.

PPs can still drop after treatment stops. PPs are a measure of myeloma activity but must be taken with the rest of your blood results. You will be still monitored as you need blood tests prior to your Zometa infusions.

SCTs are offered to patients who are fit enough to be able to get through the process which is very hard process. They used to have an age criteria but it was found to be not fit for purpose. So now if you’re fit enough age doesn’t or shouldn’t come into it. SCTs are still regarded as the gold standard though with the newer more effective drugs coming along that may change in the future.

Zometa side effects are on the mild side to most people. They are very much like flu symptoms achy bones and joints for a day or two. I never took paracetamol though it is good if the side effects bother you. Another side effect that needs looking out for is osteonacrosis of the jaw. A rare side effect that is supposed to only effect 3% and of course I’m in the 3% lol As Jeff points out good oral hygiene is a must when on zometa.

Every day is a gift.

Andy xx

Ps. I wish I could get my PPs down to 3 lol 6.4 at my last reading but that is the lowest they’ve been after 39 months of chemo!

[susieParticipant]

Hi All

I’m coming to the end of my last cycle on the Myeloma X1 trial and have got to tell them if I am prepared to continue on maintenance. Has anyone any advice on the pro and cons of staying on Revlimid all be it on a lower dose. I can’t seem to find much info on continued use.

Hope you are all doing ok and coping with this mind bending disease.

Best wishes to all

susie

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