[clarabellParticipant]

Hi Everyone,

I have already been welcomed when on other threads and thought I'd start my own. My Dad was diagnosed with AL Amyloid 2 weeks ago in London. They hadn't had all test results and we were told AL wasn't cancer but treated in the same way with CTD. We went this week to our local hospital to discuss CTD with the plan to start treatment on the Friday. It was mentioned a few times about Myeloma, we questioned this and the hospital thought my Dad had been in previously to be given the results from his bone marrow test taken 6 weeks earlier.

A mistake had happened and we hadn't been given the results, very disappointing that such life changing information hadn't been communicated to ourselves or the hospital in London who were diagnosing his AL. Dad had a cold this week so treatment for has been deferred for a week however he became worse as the week went on and went to his GP who has said he has a chest infection and given antibiotics, surprisingly they haven't been told Dad has Myeloma either. Hopefully he will be well enough for treatment on Tuesday as he now just wants to get on with it and get this process started.

How long do bone marrow results usually take? I think that there is a connection between AL and Myeloma as there is infomation on this site about it but I don't know if they go hand in hand, does anyone else have AL Amyloid on here that has Myeloma?

Still trying to work out if Dad is battling 1 illness or 2, hopefully we will get more info on Tuesday.

Can anyone tell me if Revlamid is given as first line treatment or only after CTD has been unsucceful? Just wondering as Dad has osteoperosis and side effects from Thamilimide are bones are weakened, hospital have said they will give Dad a drip of medicine to strengthen bones while on CTD but if there is something else he could be given instead of thalidimide toprevent the risk of damage to bones I would be interested in knowing if this exists.

Lots of questions I don't know if anyone on here can answer but if anyone can give me any pointers I'd really appriciate it x

[brochoParticipant]

Hi Clara how disappointing to hear your dad wasnt given his results, you could do without that sort of mix up I am sure .Sorry but I am not up to speed with AL but I am sure you will get answers from others who do know Most of us with myeloma have weakened bones and it is standard treatment to give monthly infusions of drugs such as Parmidronate or Zometa to help These drugs also help to get rid of the excess calcium which can cause kidney problems The other benefit is pain relief, I have found it does help relieve bone painand I have been on monthly Parmidronate and now Zometa for almost 4 years now. In this country Revlimid can only be used when at least one other treatment has been used and either not worked or following relapse.Did you mean Thalidomide? I dont know of a drug called Thamilimide sorry.As your dads treatment gets under way you will find it easier to duscuss the various options with his doctors and the specialist nurses are great for finding info etc .Hope this helps a little best wishes and I hope your dads treatment goes more smoothly in future Bridget

[clarabellParticipant]

Thankd Bridget,

Yes I did mean Thalidomide just not spelling it correctly so many new words to learn however Thalidomide is one I am familiar with but just can't spell it!. Hopefully Dad will get started tomorrow on CTD and I'll keep you posted. Thanks for your help, I think Dad is to get the Parmidronate as I think that was what was mentioned to be given by IV. Thanks again, Clara

[onlymeParticipant]

Hi Clara … Can't answer any of your questions … But what can do is send you lots of love as you battle your way through things … I am new too so can identify with all the initial queries … Good luck tomoro my mum starts cdt tomoro too xx take care hope u get answers u need xx

[clarabellParticipant]

Thanks so much only me, I extend a best wishes to you and your mum tomorrow and hope she has a relatively straight forward course of CTD with as little side effects as possible, I will keep up with your journey and hopefully we can offer support to one another as our parents progress with treatment, Clara x

[MinParticipant]

Hi Clara,
I think its possible your dad could be offered Revlamid if he is involved in a trial, the usual 1st line treatment is CDT, followed by velcade. I believe the amloid is where all of the bad bits of myeloma collect in one place usualy an organ, and the same medication is used for both. Taz who occasionly posts on here is married to a sufferer.
With regards to your Dads chest infection, normal everyday anti biotics that you or I would get dont usualy have the same effect on a myeloma sufferer. Peter has always had really hefty doses of antibiotics to overcome those nasty blighters. As not many Dr,s encounter mm iether keep an eye on wether he is responding well to the anti biotics. If not speak to the nurse specialist and tell her what he has been given.
Peter has mild (30%) osteoporosis and the Biphosphonates will help usualy given by drip which can be only 20 minutes of waiting around. This usualy helps a little with the bone pain and has been found to be usefull in treating mm in newly diagnosed mm patients ( Trawl this site for further info on the subject)
I hope he can get started soon on his treatment. Good luck for him
Min

[GayeParticipant]

Hello Clara – I don't know very much about about Amyloidosis but I believe that there is a connection with Myeloma because this site embraces it with other inforrmation. Maybe a call to Ellen at MUK to get some further information would help. I also know that the main hopital specialising in this disease is the Royal Free in London. Have you been there?

It sounds like you have a lot going on at the moment so it would be helpful to get it fully diagnosed and then know the treatment for it. Try to take it all in slowly but surely as there really is so much to learn about in the early days, it really can be very muddling. Keep asking the questions you need to understand his situation.

Good Luck.
Gaye xx

[clarabellParticipant]

Hi Gaye/Min,

Thanks for all the info I think I am going to give Ellen a call. Unfortunately Dad didn't start his CTD today as they felt best to wait another week until his chest is better, I will take your advice Min and perhaps seek another form of antibiotics if required. We have been down to the Royal Free who were most helpful and diagnosed Dads AL, today we were told that our hospital will deal with the Myeloma and Royal Free with the amyloid and they will communicate at relevant times which is good but to date communication has been made via ourselves to the Royal Free as the local hospital seems to be failing to send them info on scans etc, but I guess this is just the usual case of the left and right hand, perhaps in time this will improve as its still early days. xxx

[onlymeParticipant]

Hi Hope that you are ok..

Have been thinking of you today as we seem to be both at the same point …. you with your dad and me with my mum !

Sending you best wishes to you and your family… Lots of love to your dad and hope the chest gets better very very soon..

We have just started the CDT today, athough boy is it minefield.. but am positive in a week or two all will become clearer!!

Keep in touch and will follow your story too

regards

Only Me!!
x

[GayeParticipant]

Dear Clara – Good to hear from you. You will always have to keep a close eye on the communcation between both hospitals. Two is bad enough but when it gets to three in my case ragarding the RT, stress rates rocket. Good luck and do call Ellen.
Love, Gaye x

[tomParticipant]

Hi Clara
Well you have had some great advice on here 😀
And that only leaves me to say
Good Luck to you and your Dad with his forthcoming treatment:-)

Am sure it will run smooth

Love
Tom "Onwards and Upwards" xxx

[ChrisParticipant]

Hi Bridget, I was talking to you afew weeks ago before i started the lenidimide and wasn't in great form. I have a chest infection this past week but am getting better now. How are you keeping?thanks Chris

[brochoParticipant]

Hi Chris sorry to hear you havent been well , chest infections are really horrible I am struggling with one at the moment!! Hopefully you will be back on top form soon How are you getting on with the lenilimide? I must admit I am struggling with Revlimid , nothing too major just dont feel great most of the time ,mind you I am not falling asleep so much now Take care love Bridget x

[ChrisParticipant]

Hi Bridget,good to hear from you, I went to the dr today and have to take more antibiotics not feeling great either,bit fed up that its not cleared up so Please God will be after these antibs. I find the Lenidimide ok but I am sweating alot dont know if thats from infection. My daughter was home for a few days so that was nice company. I havent been on the forum as I was in bed last week. Are you resting? and hope ur better soon, at least the weather is good! are you in remission? I am ninety percent thank god,
the lenidimide is a maintenance dose,hoppe to hear from you soon, as my daughter will show me again how to use forum before she goes,
take care,love
Chris

[ChrisParticipant]

Hi im just wondering does anyone find they are sweating from the lenidimide maybe its my chest infection,thanks Chris

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