[brochoParticipant]

Hi Chris these chest infections can be a pain to get rid of ! Arent daughters lovely and its always nice when they come to keep you company, not too sure how I always end up cooking thought!! No I am not in remission When I relapsed and was on Velcade for 3 months but it didnt work So now its fingers crossed Revlimid can do the trick , I am just on the last week of my 3rd course so should have some results soon Hope you and your daughter are enjoying the sunshine take care love Bridget x

[AMcGuireParticipant]

Hi Clarabel, I've recently came back to the forum after a 3 year break so just catching up with all the news and stories etc.
I'm Angelina, I care for my husband John who was diagnosed with AL Amyloidosis and Multiple Myeloma back in December of 2007.
I replied to a previous thread you had in another post but will recap here also. Johns tests went on forever and ever. He was extremely ill – lost 6 stones in weight, 7 broken back bones and his spine crumbled. It was another 3 months before they started treatment of CTD – same as your dad.
I was treating John at home with the oral chemotherapy (Cyclophosphamide) but every 4 weeks he went to hospital to get IV fluids – one of which was a bone strengthener (sorry, I'm desperately seeking my memory for its name). The bone strengthener stopped any further bone breaks which was great. After he finished with CTD cycles they gave him tablet form of bone strengthener which is much better than going to hospital. He takes the tablets daily now (Bonefos).
Every 6 months John flies down to Royal Free hospital in London for scans. The scanner picks up where in the body the amyloid deposits are – in Johns case his kidneys, dialysis has been threatened a few times as they don't work properly.
After 6 months of CTD John achieved remission. He continues to fly to London every 6 months for scans and each month he posts bloods down to them for analysis. I believe he is their "star pupil" as he was not expected to survive 6 months but against all odds he's still with us today, they are VERY happy with his progress. His latest scan (March) showed he had very little amyloidosis at all, said his scans looked more like a "normal person".
For all they are 2 separate conditions, they are treated hand in hand just as you say. Treatment is very much global for both.
Johns amyloidosis is doing great however the MM has raised its ugly head and John is back with the cancer again not doing so well. He got 3 years break though so can't complain and given they expected him not to last 6 months he's done alright.
I'll be happy to answer any other queries you have clarabel, though given the time you posted you will probably be an expert now.
I do hope all is going well with your dad, things do tend to get worse before they get better when on chemo … it knocks the life from you, you'll see a huge difference when your dad finishes up the cycles … like he becomes human again.
Wishing you well and happy to help in any way I can in future.
Best wishes, Angelina

[clarabellParticipant]

Hi Angelina,

Thank you so much for your post,

You are right in a way we are now getting to grips with AA and MM, as with John my Dad posts bloods down to the Royal Free every month and so far the levels are coming down nicely and at a good rate, we will be going back down in August again for 6 month scan. Dads AA is on his tongue, nerves and a little on his kidneys. He is now onto 3rd cycle of CTD and goes into hospital every few weeks to get the bone drip. They have suggested he might be suitable for SCT but at the moment he is opposed to having a transplant as it seems so vigorous and he's not sure if he'd cope with the high dose of chemo, something to think about though. Can I ask if John had SCT or has he had 3 years remission after CTD alone?

I am so sorry to hear MM has reared its ugly head will John go back on a course of CTD? They have told my Dad there are no assurances how long after treatment MM will stay at bay I just hope that he gets another 3 years like John before having to go through this horrible cycle of chemo and like wise I hope John will kick MM's behind again!

I really would like to stay in touch. This site is a god send to pop in and out of for support and advice, we don't know any one with AA or MM and had never heard of it so it is difficult to explain to people what these things are without fully knowing yourself. There are few people on here with both so it would be good to keep in touch.

Sending you my thanks love and best wishes to you and John
Clarabell xxxxx

[AMcGuireParticipant]

Hi Clarabel, nice to hear from you, hope you and your dad are keeping well.
You were asking if John had a SCT – no is the simple answer. He was put on the CTD cycles for 6 months then achieved remission from that alone – given how incredibly ill he was I think the combination of the 3 drugs has worked miracles on him. He was very limited in what they could do for him because his health was so poor. He'd actually been to the GP for months and months before the diagnosed the cancer, though CTD sorted it all out.
This is now his first relapse (I wrongly posted he was diagnosed in December 2007, it was actually December 2006 diagnosed and he started treatment in the March of 2007). He's been in remission since September 2007 which has lasted till March of this year which is good going really.
As this is his first relapse they put him on VELCADE which is a 5 second injection twice a week together with Dexamethasone steroids.
Unfortunately he had a bad fall down the stairs 2 weeks ago and since then all sorts of health issues have come up. The VELCADE has now been stopped due to so many side effects, he has had 2 cycles of it though but was told VELCADE was fierce with the body so it wasn't such a surprise really. He's currently in hospital following his fall, just home from seeing him actually. He's a poor wee soul, however I've been told that once his strength is up again that he will probably start on REVLIMID the oral chemotherapy drug where I treat him at home once again. This is music to my ears as it saves all the running up and down to the hospital.
I asked the consultant about SCT, this is out of the question unfortunately as John is 52. The consultant said he had recently done a 30 year old male a few weeks ago who was a fit and healthy runner up until 2 days before his transplant, apparently he has commented to the consultant just how hard going it has been and that he would never had considered it if he had know just how awful it would be. Makes you think really, maybe its not so bad that John can't have it.
As for your dad, well I can tell you that CTD knocked John for six, he was so frail when taking it. I noticed a HUGE difference at the end of the treatment when he wasn't filling his body with the toxic drugs … wow, the transformation was incredibly actually, he became John again, not so much my husband with cancer. His colour changed, his energy levels came back, he was more active (as active as you can be with a broken back I suppose), but it just shows you how the chemotherapy sucks the life from you. Sometimes I used to wonder what was worse, the illness or the medication?!
I remember him saying that everything tasted of disinfectant, he had an awful taste in his mouth – your dad may also have this problem and be off his food with the reluctance to eat. I read on here 3 years ago that if you eat a piece of fresh pineapple just before you eat whatever it is then you will revive your tastebuds for a short period – apparently there is some sort of enzyme in the pineapple that reacts with your tastebuds?! John absolutely hates pineapple, but he would eat small chunks so he could get a proper flavour of food otherwise it tasted of disinfectant – so top tip for your dad!! :o)
If I can help again, by all means get in touch … its a pleasure to share any wee bits of information I can. As I say, its been 3 years of a break from the site so I'm just feeling my way again.
Wishing you a sun-shiny weekend Clarabel and much love and healing to your dad too xoxoxo

[kathleenphillipsParticipant]

Hi Clarabell. Fingers crossed for your Dad. My husband had a course of ctd last year. I don't know if it is the case for everyone, but he got very grumpy on it, to the point of being a bit hurtful towards me. Your Dad may not be the same, but be prepared just in case. I think it is the deximethazone the is the cause as it is a powerful steroid. Other than that, it was very sucessful, so it's a small price to pay I suppose!!

[BADGERParticipant]

Hello Anghelina

I was very intered in Johns story did he take any medicine after the CDT apart from pain killers and bone strengthner he had a good remission a lot of people have SCT and only get a year or eighteen months remmission

Kind Regards Jo 😉

[AMcGuireParticipant]

Hi Jo, hope you are doing okay?
We've had a big roller-coaster ride over the years, still riding it yet! lol
I'm casting my mind back a few years …. after 6 months of CTD Johns cancer went to sleep. They continued with Thalidomide for a few months afterwards to ensure the paraproteins stayed low (just a few months, low number but can't remember exactly how many months sorry). They then stopped the Thalidomide as all was well with his various figures (this was a heart in mouth moment for me wondering if all would continue to be well).

Johns Medication over the years has consisted of:

Bone Strengthener:
Sodium Clodronate

Pain medication:
Pregabalin; Fentanyl Patches; Lidocaine Patches; Oxynorm; Abstral

Maintenance Drugs:
Asprin, Pantoprazole; Senna; Cyclizine; Atorvastatin; Bisoprolol; Adcal-D3 (calcium tablet)

AntiDepressants/AntiPsychotics:
Citalopram; Haloperidol and Diazepam

Until March he was taking the above, however from March until last week he was also given Velcade and Dexamethasone. They have now stopped his Velcade though as it has caused him lots of problems hence he's in hospital currently on fluids etc. He also fell down the stairs as he was sleeping 24/7 and we think he's been "living a dream" which he did often. He's just a poor soul at the moment.

I hope I haven't rambled on for too long Jo, I just wanted to give you a complete picture. With his crumbley back he struggles day to day with his mobility so takes lots of pain medication, but hasn't had any cancer-related medication since 2007 when he went into remission.

I do hope this answers your question. He wasn't eligible for SCT back in 2007 and again he's not eligible this time either as he's now too old and too ill. He's done great though to have gotten this far, just as you say without the SCT.

Sending love and a wee hug too
Angelina xoxo

[BADGERParticipant]

Hello A plus a monthly dose of pamidrinatengelina

thank you for the hugs I need them
I was diagnosed in jan 2009 entered hospital with double pnumonia renal failure and MM I also needed eight units of blood
First line of treatment was a big mistake idarubicin, damaged my kidneys even further then had 5 lots of CDT then took thalidmide for a further year 100mgs until PN got bad I am only on medication for my kidneys now and a aspirin plus a small blood pressure tab also a monthly dose of premidrinate only 30mgs to protect my kidneys not had SCT as kidneys to badly damaged didnt want to risk dialysis which is still a threat kidneys only 30% not done badly as a lot of people only last a year or so when they have SCT and the heavy chemo cannot do you alot of good love and hugs jo

Hugs to john I hope he is better soon x:-)

[Author]

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