[tomParticipant]

Hi Ann and Pete

Well I strated My CTD in Feb 2009, all went well Except I got Out of breath that I had to go on sick in the may, I was that Bad that one of our neighbors came round to see me and lent me his shooting stick ( a walking stick with a seat on it) so I could still walk the dog but when I felt weary (and i did) I just popped open the seat and sat down it was great 😎 But as for the pain?? well to be fair I am very lucky as I have been through it CTD then SCT and have been pain free 😀

Love Tom "Onwards and Upwards" xx

[foxy555Participant]

Thanks Tom

Another question answered!

Take care

Ann

x

[VickiParticipant]

Hi ann,

Have read all of the posts and it did make me laugh ( I do sometimes) when you said that Peter was stubborn and not keen to post initially. Colin doesn't do the posting but I read them all too him. I then share what I am going to write. I would echo everything on here. When we first saw the number of tablets we could not have believed how many and read the instructions a 100 times to make sure!

What I do is a spreadsheet each month and tick off when Colin has had the tablets and keep a diary of food eaten and how he is feeling on a daily basis. This way we can compare each month checking if appetite is up or down and the feelings because we've found the steroids can make Colin a bit emotional at times. You tacked about Peter looking I'll. I understand this, Colin has a 'look about him' sometimes and i am getting used to understanding the tablets are Working and getting an inkling of whether we might need to do a temperature check (digital thermomater good kit to have). Or to the hospital for a check. There no doubt this is hard for the pair of you (us) but vastly different reasons. I don't like it when I can see Colin poorly and do nothing. I feel my value is organising the tablet rota, trying to do some tasty food and keeping us both buoyant.

I'm no expert with this and still feel very tense and emotional about this whole thing but just take one day at a time and no thinking what if! Colin had one bone affected in his vertebrae and has had radiotherapy for that. He now takes bone tablets everyday. Be strong.

Vicki and Colin x

[foxy555Participant]

Hi Vicki

No, it does'nt get any easier, does it!!!! After only just over one week on the CDT, I have seen quite a change in Pete (really just over the last 2 days), but unfortunately not for the better. The pain has not gone away,just moved from upper back to shoulder, as I previously mentioned, and now at the front of his ribs. If only he could get some respite from this (still sleeping half sitting up) -he would be so much better. He goes for a full body MRI scan tomorrow.

He has now lost his appetite and taste and is having trouble going to the loo (but we knew about these side effects). He has also had the hiccup syndrome like Paul mentioned.

What are the bone tablets Colin takes? as I mentioned before, Pete has to go on a bone drip every month for 30 minutes – there are so many individual treatments!!!! I am sure you must agree, you cannot find another person on this site with the same issues, all different in one way or another!!!

We cancelled our holiday at the week-end. We were due to fly to Turkey for 2 weeks mid-June. Pete loves his hols, he normally plays golf every 3 days, bless him, has'nt played since last October. We are hoping for a break in July/August, depending on how things go. It has really been interesting reading about insurance on the forum, as David said, certainly not worth taking any chances whatsoever where travel and health are concerned.

Take care both of you

Ann

xx

[VickiParticipant]

Hi Ann and Peter

First of all I hope your bone scan went ok today…with regard to the pain Ann, Colin is on some other tablets for his bad back (not connected to mm, this was what prompted a blood test for inflammation! (some inflammation it turned out to be!), so it's hard to say what pain he's in mm related. Colin sleeps a lot but we're not sure if it's the mm or side effects.

With regard to appetite Colin goes in cycles of eating well and then not eating much for a short while. As long as Peter could eat a bit I think that's ok for a while. I get worried if I think col hasn't eaten enough but I have tried to relax a bit if there is the odd day when it's not as good as I'd like (this is where the diary comes in handy so that we can look back at similar times int eh last cycle or two! What about milky drinks, Horlivka, oval tine. Colin also had a spell where he enjoyed a bottle of guiness (better than nothing!)

Re the toilet issue prunes on a regular basis and some fruit in syrup, try that. The consultant also gave Colin some powder sachets (he tells me they taste horrible).Colin has also had terrible hiccups. With regard to the bone protection Colin takes 4 tablets each night even after the 21 day cycle has finished. They are called sodium clodronate (clasteon 400mg).
With regard to the treatments as members have said, it's an individual condition so the treatment must vary a bit!

Sorry you had to cancel your holiday – 12 months ago on 3rd may we were in mexico for two weeks (how life can catch you unawares!). We are too scared to go anywhere before Colin has his SCT as he has had a couple of rigours like outdoors Paul had, that unnerved us bit feel a bit more confident now we know what it is. Good luck to you guys if you can get a holiday. We love to travel too.

I know Peter will look poorly, Colin does sometimes and I hate it, but remember it's the drugs doing their good work to beat MM. Keep your chins up, this is only a blip and all will come good. This Mm keeps you on your toes. For example when I went to work this morning Colin said he felt awful. Then I phoned later in the morning and he felt much better and went to work for a good part of the day 🙂 Just don't know where you are with it.

Take care

Vicki and Colin x

[tmcParticipant]

Hi Ann and Peter
I hope your body scan went well and nothing new was found.
Sorry your vacation was cancelled but there will be better days ahead and more holidays for you both.

It's hard to go with the flow and try and let the old life vanish and this new MM life rule.

It does get easier as we adjust to it all.

Take care Love Teresa
My husband has MM and all the issues you are having we have been through.As everyone says we are all individual cases with different problems and treatments but there is the same thread there.

[foxy555Participant]

Hi Vicki

Things have got worse tonight, got home from work, Pete said he bent over and felt a searing pain in his spine, finding it difficult to walk. He had something to eat and went to bed at 7.30. He actually had a bottle of lager, I think he was hoping it would ease the pain, or at least relax him.

Had a horrid night last night, we both did'nt sleep much, he has now got a chesty cough, which obviously hurts his ribs when he coughs!!

I thought Gill's post was so sad and could feel for her in every word that she wrote.

I have had a couple of glasses of wine tonight, but just wish Pete was down here to share it with me.

Take care both of you

Best wishes

Ann
xx

[foxy555Participant]

Hi Teresa

Thank you for your kind comments. I am having one of those nights!! Feel so useless and very sad – but being on the forum does give you a lift – and you don't feel that you are so alone!!!!

I honestly thought that with 2 weeks medication- CDT, that Pete would have started to feel some ease from his pain, but it has not happened, his pain has got worse.

Anyway, as David says, Onwards and upwards!!! He certainly has created a 'catchphrase'

You both take care.

Many thanks

Ann

xx

[AlisonWParticipant]

Hi Ann & Pete,
My mum was diagnosed with Myeloma in September 2006 (aged 66), having visited her GP several times since the March of that year with severe back/rib pain and spasms. Unfortunately they had fobbed her off with paracetamol and diagnosed muscular pain for 6 months before she was finally diagnosed. By this time the Myeloma had really taken hold and caused a lot of damage to her bones.

To cut a very long story short, I showed myself up nicely when visiting her in hospital (the Royal Hallamshire in Sheffield) and demanded some 'proper' pain relief for her. She was referred to the pain clinic and prescribed Fentanyl patches which she has applied every 3 days since that awful time. Until recently, the same dose has kept her pain at bay and she has been relatively pain free thoughout her many treatments (the best of which was Revlimid which was brilliant for more than 2 years).

I think it may be a good idea for you to ask to be referred to your pain clinic and let them alleviate your symptoms properly. Don't let them fob you off with paracetamol/ibuprofen as it just doesn't work.

Wishing you both the very best
Alison

[VickiParticipant]

Hi ann and Peter,

Sorry to hear Peter is feeling so rough and you ann in a different way. This forum has helped me loads too (and Colin) as I share all the tit bits and information spotted! That said the mm is still there. I do sympathise with you Ann because there are times when that helpless lonely feeling can wash over you-usually when things are not goin so well!

There will be good days and when they come they are special and you can feel on cloud nine. We went through a spell where we did nothing but focus on mm, Colin was too poorly and shattered!. So was I, with the worry. Then things got a bit better, but it takes some time. We ventured out for a couple of hours for a meal(6pm till 8pm) so that if col felt tired (and he did)we could go home. Then socialising with friends mainly at our home so that if Colin needed a sleep we could work around it. This will come, but I can tell you its wasn't easy, still isn't and still feels very abnormal. Your anxiety and Peter being poorly is similar to Colin but it's very hard to deal with for both of you.

Re the pain. Colin had a pain in his rib, which was there for a while, turned out to be nothing. However colins back low down was very painful. At one point he could hardly walk and fell down a couple of times. That was very upsetting. We were referred to a pain specialist in palliative care. That freaked me out because I thought they only dealt with people who were not going to make it, so I cried there as well!. Anyway it was the best thing that ever happened, they eventually found a combination of drugs that worked. Zomorph tablet twice a day, pregabalin tablet twice a day, paracetamol (8),and morphine oral solution when needed. He does not always need the paracetamol or oral solution but the rest has real led worked for hi. You might want to ask your doctor about that. Also check out if any fractures have occurred, apparently very common and easy to do with this condition.

Try to keep your chin up, this is a very difficult time for you both.a bubble that none of us want to be in. Keep in touch. Try to find something to relax you Ann. I found that baking worked for me. Think I've made every cake, tart and crumble in my cookery books.! A glass of wine is good too. X keep in touch.

Vicki & Colin

[tmcParticipant]

Hi Ann,
I do hope very soon you will have Peter's pain under control or at least manageable. It can sometimes take a while to get the corect dose.We also(same as Vikki) went to a palliative care pain doc 7 years ago so the name isn't as bad as it sounds but the oncologist doesn't always have the answer to pain control so a specialist is a good way to go and ignore the scarry name.
Hope you are having more relaxing days and not overdoing it at work. Stress can take very strange forms in our bodies so be aware of your own body and moods and really try as hard as it is to calm down and breath,
Eventually you will get used to this new life we are very adaptable watching the suffering and pain isn't easy but you will cope.
Take care Love Teresa.

[foxy555Participant]

Hello Teresa

Just looked up your previous posts and now realise what you are going through and what your circumstances are!! Bless you!! – that you took the time to acknowledge my comments and offer really good advice.

You sound so brave. You did make me laugh however about the swear words!! – I thought it was only me, I think I have invented new ones!!! – Well at least it gets the frustration out of you.

I do wish you both the very best.

Take care Teresa, best wishes

Ann
xx

[foxy555Participant]

Hi Vicki

Hope you and Colin are well. Thanks for the last post, really good and positive. I did say to Pete that I was going to give the forum a break, just felt I was being negative all the time and not being able to help other people because Pete so newly diagnosed. Anyway, after reading your post and god bless, Antoinette – only 39 years old and then reading about Teresa's husband, felt so sad, just had to join in again.

Like Colin, – Pete does'nt visit this site, I tell him what I write and then I give him the feedback!!

Pete takes his CD all in one go, 20 tablets every Saturday and it does give him at lift!! Still cannot understand why others take them on a 1.4.8 day cycle. Well I suppose the docs know what they are doing.

Just a quick story. My sister's friend has been having bone problems for 6 months (constant pain walking, been off work for 6 months etc etc) – still no confirmation and still undergoing tests, but she said to my sister just in general chat- they did mention something called myeloma'!!! My sister just froze she did'nt feel it was her place to tell her anything!! She is due to get married in June.

So despite what they they say, Myeloma is not so uncommon!!!

Take care both of you

Love

A

xx
xx

[PerkymiteParticipant]

Actually Ann I was told by my doctor that Somerset is a hot spot for Myeloma. He has two other patients, which is unusual!

KIndest reagards – Vasbyte

David

[VickiParticipant]

Hi ann and Peter

Just wondering how it's going. Colin is on day 11 of cycle 7,second lot of dexamethasone. So far so good…..

Ann I read your last post. I was chuffed that you said I was positive. That's what I try to be, but how hard is that sometimes!!!.still my thoughts and prayers are the same each night. Cure for all and Colin to beat this condition into submission. Hope you are both doing well and keep up the positive thoughts. Mind over matter x:-)

[Author]

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