Oh good gracious Eve, you poor soul and poor Slim too – what an awful lot to be going through all at the one time. Bless you both.
I've just got my John home from hospital after a couple of weeks. Some staff were so helpful, others not so much. John had a bad fall down the stairs then has been suffering terribly with diahhorea from Velcade. He is disabled, needs help with mobility, toileting etc ….. on one occasion in hospital after going to loo he asked for assistance getting cleaned up "Indeed I will not" was the nurses response to him when he asked for her help. Its bad enough for them being ill and unable to care for themselves but to be humiliated and almost having to beg for help and plead your case explaining what all your problems are is just ridiculous. John has lost alot of his confidence, I bet Slim is feeling the same way right now.
Its exhausting caring for someone with this disease. You have to be 4 steps ahead in thinking all the time, covering all the "what ifs". It wouldn't be so exhausting if NHS staff co-operated slightly, it would certainly take a bit of the pressure off us carers but instead we have to be there, watching, asking … and at times its like getting blood from a stone.
I truly hope Slims situation improves both his health and his surroundings and care. I'm completely flaberghasted after reading a few of your posts, absolutely shocking level of "care". I understand completely Eve why you would want to scoop him up and take him home where he'll be safe and sound. Also, you mustn't apologise for speaking the truth! Heavens, its not all a bed of roses … we all go through good and bad patches, sharing these experiences is what the site is all about, it gives us all a perspective on what could potentially happen to us or out loved ones, what we should perhaps be looking out for ourselves and also what was done to help put things right again. We all learn from each other and send get well thoughts and good wishes to you too. I'm a great believer in the power of thought, I think it makes all the difference.
Sending love to you and to your Slim Eve,
Bless you both with brighter days ahead
Love, Angelina xx
Ooooh, this is a step in the right direction. Excellent!
John has been badly affected with diahhorea from only 2 cycles of velcade so his consultant stopped treatment till he gathered up some strength again. We got him home on Friday after a couple of weeks in hospital.
Next hospital appointment is tomorrow morning (Monday 16th), I will definitely be talking about this ….. they are thinking of returning to velcade treatment but once per week instead of twice. I hope the reduced doze will lessen the side effects.
Thanks for sharing 🙂
Angelina x
Bless you Tina, I am so very sorry for your loss …. I can't imagine the emptiness you must feel now after caring for your Pat for so long.
Cherish your memories they don't go away. When you feel ready look out all your old photographs and remember him with fondness, the Pat you knew BEFORE he took ill when your lives turned upside down.
Pat will be so completely proud of you, his loving wife and best friend, carer and supporter; he couldn't have achieved all he did without you by his side. May you be blessed with strength and courage to see you through the days and weeks to come …. one step at a time.
With love
Angelina xx
Hi Sharpy
YES!! Is the answer to your question :o)
My husband John was diagnosed December 2006 with Amyloidosis and Multiple Myeloma.
He started CTD in March 2007 and went into remission in September (after 6 months of treatment). He was NOT eligible for a SCT as he was so ill, like you he had amyloid deposits and was not expected to survive the 6 months of treatment as he was so ill at the time. He sends blood samples to the Royal Free hospital, London, every month also and flies down (we live in Stirling) every 6 months for his scans.
Anyhow, he only had CTD and achieved remission. His first relapse was a couple of months ago.
Hope that answers your question.
Sending love
Angelina
Hi Marian, sorry you are having an awful time. I'm Angelina, I care for my husband John who has been fighting MM and Amyloidosis for 4 1/2 years now.
Like you, I thought all the testing was never going to end. John was going to his GP for 6 months or more before diagnosis having urine and blood tests whilst fading away (lost 6 stones and was ghastly). Finally he was diagnosed then more testing began, like your dad – bone marrow biopsies, more bloods, xrays etc. This more intricate testing took another 3 months before they actually started treatment. I understand now that the tests all take time to develop and get back and that it gives consultants/doctors a better picture of what is going on inside the body and so they are better armed to make up your "combination" accordingly. At the time though I was pulling my hair out wishing they'd do something and quick!!
John was put on CTD (oral chemotherapy which I gave him at home in tablets – Cyclophosphamide, Thalidomide and Dexamethasone which was the steroid). He took this for 6 months and went into remission.
I remember VERY clearly John going for his very first appointment back in March 2007 to the cancer clinic …. he met a woman there who wasn't too chuffed – she had just relapsed for the first time with her Myeloma – [b]SHE'D BEEN IN REMISSION FOR 19 YEARS!![/b] Wow, this gave myself and John great hope.
Like you I had also tried gathering all the information I could about Myeloma so I knew what was ahead, ofcourse in doing so I'd stumbled across the 3-5 year life expectancy. This just proved to me that [b]EVERYONE[/b] is very much individual, you can see this from reading many posts on here – there are so many [b]different treatments[/b] given to so many [b]different people[/b] who all handle the treatments and side-effects very differently from each other! Weird really!!
Rest assured your dad will soon begin his MM journey, it just takes a little time (its frustrating waiting though). There is lots of advice here on the website and ofcourse many of us are carers and fighters so can lend you a helping hand along the way too so you need never feel alone.
Hope you get some news soon, its a bit like waiting on your job description coming through from an HR department; once you get a response you'll know what you are meant to be doing.
Sending love meantime
Angelina xx
Hi Sarah, thanks for your message.
Isn't it funny how things are so different for each individual?! I suppose it would be a boring old world if we were all the same, lol.
Poor John had the nursing staff very busy last night, I hope he is better tonight and actually gets some sleep. Bless him, he's a poor wee soul.
As you rightly say, he's in the best place and is being cared for so thats all that matters. Hopefully the chemo drug will work its way out of his system and he can gain strength before they throw more at him.
Sending love
Angelina xoxo
Hi Bridget
Have had you on my mind today. Hope you were able to meet with or speak to your nurse today and that you got the help you needed. Hopefully you are a little more at ease and not worrying so much … easy said though and yes, just mere words.
Sending love as always and thinking of you too
Angelina xoxo
Hi Dai, I'm Angelina … returning after a 3 year gap. I look after my husband John who has MM and Amyloidosis, he's been in remission since September 2007 until recently.
Just want to wish you well as you embark on the next stage of your Myeloma journey. Hope Velcade works well for you – John is currently a poor wee soul in hospital after a bad fall and many side effects from Velcade. His Velcade has now been stopped and he's to gain some strength before they throw more drugs at him, oh dear. Everyone reacts differently though. The thing he found most yucky was everything tasting of soap, good luck with that one!
Will be thinking of you tomorrow.
Best wishes, get those fighting gloves on!!
Angelina x
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
Hi Min, just back from the hospital visiting John.
Archangel Raphael is the healing angel, you could ask for his help to take away pain and guide the doctors in the right direction to put you on the road to recovery.
Archangel Michael is the angel of strength and courage, you could ask him to sit with you (I am doing that for you just now also), or stay with you through out your testing time.
Angels are desperate to help us, but ironically because of the law of freewill they need our permission to do so – unless they really MUST intervene in a life/death situation when its not really our time to "head home".
Daft as it sounds, breathe in bright shining light (positivity) and blow out black nasty smoke (negativity)… just visualise in your mind as you do it.
Whenever my girls are scared about something at school I have them imagine a big cocoon of light around them, almost like they are a walking easter egg of bright shining light. I tell them this is their forcefield and nothing can harm them, then for Archangel Michael to go to school with them. You could try that too.
LOL … I hope you don't think I've lost the plot?! Its just all the wee things that get us by, I have dozens upon dozens of books on angels, healing, spiritualism etc etc etc …. there is so much to learn and so much proof that all these things really do work. John still rolls his eyes but after the healing number thingy he's more open-minded.
My youngest daughter Teagan is "sensitive" and sees spirit; Erin, the eldest also used to see spirit when she was younger but can't remember now. I see flashing angel lights when they are close to me, we have lots of photos with angels orbs (the circles/balls of light that show up on photographs that are travelling spirits), we get left feathers quite often, sometimes coins with specific dates on, sometimes we all wake up with the same song in our heads. Its all great proof for us.
Poor you, I feel for you. Its such a shame that you've got such pain over the weekend when GPs surgeries are closed and you don't have the same access as midweek to professionals who can help. Tomorrow is Monday so please do get on the phone and get yourself sorted. John was told NEVER to be feeling pain, always take enough pain meds to be comfortable. I hope they can tweak your medication to settle you or to investigate just what has happened, maybe a fracture with all the good housework you've done lately? No matter what the outcome, you are sure to be in good hands.
Sending love and a healing hug
Angelina xoxox
Hi Bridget
Just wanted to send my love and some healing thoughts too. Like the others are saying above me here, you may well have got carried away with all the good work you were doing in the house and your body is telling you off and asking rather impolitely to calm down a bit. Although you are more in-tune with your body than any scanner or doctor so will know yourself what needs investigation and what is okay to let be.
Definitely worth speaking to someone in medical profession though as you could need your pain meds adjusted. John used to take MST and Severedol but had them changed a couple of years back and now takes Abstral (a tablet that disolves under his tongue for anticipated pain), and OxyNorm for breakthrough pain which both work well. He also has lidocaine patches which I attach to his back daily which numbs pain and he wears Fentanyl patches too. Lots of pain meds to help make him more comfortable, maybe you need to be "tweeked" too.
John had some hip pain recently which was constantly gnawing and making walking difficult … please don't think I'm mad … but myself and my girls are very much into angels/spiritualism. I was told about the numerical equivalent of a special healing crystal which is 00000001 (seven zeros and a number one). Write the number on a piece of paper and put the piece of paper on the place you feel pain – John did this (he doesn't exactly believe in all this "mumbo jumbo" as he calls it) and after an hour the pain in his hip had gone! Quite incredible really and I was honestly rather shocked myself. Maybe worth a try till you see someone about it.
Hope you manage a stress-free and more comfortable day today. I'm thinking of you and sending healing thoughts.
Much love,
Angelina xx
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
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
Hi Clarabel, I'm Angelina. I see your post is from February so hopefully you have got all the answers now that you were hoping for.
My husband John was diagnosed with AL Amyloidosis and Multiple Myeloma in December of 2007 (4 1/2 years ago).
Like your dad I felt the tests were going on forever – bone marrow biopsies, x-rays, endless blood tests. He finally got started on treatment in the March of 2008 – 3 months AFTER diagnosis. I was tearing my hair out watching his health deteriorate. By that time, he'd broken 7 back bones, his spine had crumbled so he lost 5 inches in height, he'd lost 6 stones in weight and was generally dying before our eyes.
Anyhow, I believe the testing and waiting did him good as the medical staff were able to gather a complete picture of his MM and Amyloidosis. He was given CTD – Cyclophosphamide (chemo tablets), Thalidomide and Dexamathasone (steroid). He took these drugs for 6 months then achieved remission. He wasn't expected to survive as he was so incredibly ill, but has proved them wrong as he's still here 4 years later.
He flies down to London every 6 months from here in Stirling (Scotland), to the Royal Free Hospital for his scans. The scanner shows up where all the amyloid deposits are – Johns kidneys in particular are affected.
For the 4 years he has had constant bone pain and takes many pain medications, patches and gels … anything for comfort. He must drink lots (but often doesn't!! grrrr), in order for his kidneys to remain healthy, dialysis has been threatened in the past.
For all they are different medical conditions, they seem to be treated hand in hand. At the last scan (March) Johns Amyloidosis has almost completely gone, the doctors said his scans look very much like that of a "normal" person. Unfortunately his remission has recently come to an end and the MM has reared its ugly head.
I hope I have answered your queries, I will ofcourse be happy to help in any way I can. You know that everyones story/health/life is very different from anothers so John is just an example. Perhaps someone else with Amyloidosis can give their opnions and story to you too to give you a better picture.
Sending love to you and hoping your Dad is well on the mend and coping well with his treatment. xoxoxo
Awe, bless you Bridget …. thank you so much for your kind words and caring thoughts.
I've always said the whole MM thing is like riding on a runaway roller-coaster – there have been so many ups and downs over the years and there is really not much control over what twists and turns are coming next.
Yes, you are partly right about John being a fighter, but at the best of times he's just the worst patient ever and won't help himself which can be very frustrating at times!! :o) I've been reading stories about others not drinking enough – yes, this is John too! Grrrrr …. lol John says I am the cog that holds us all together, which is true; but when you love somebody you do anything and everything you can to help give a quality of life and dignity too. We've laughed and cried together over the years, our sense of humour has got us through the hardest of times.
He's just been a poor wee soul over the years and to be honest for all the time he was actually in remission I think somebody forgot to tell his body as there hasn't really been any change. He struggles to walk, needs help with everyday things, sleeps almost 24/7 … our daughters are 5 and 10, he's missed out on so much with them although we do have a mobility scooter in the boot of the car which we use to get out together. Its just a wee shame.
Oral chemo would be fantastic, that way I can have him at home again without anyone poking and prodding. I just want to hide him away safe from everyone and do my "thing". I very much liked oral chemo before, I personally felt more in control of what was happening to him and it saved all the running in and out of hospital too.
I agree it is very exhausting watching someone you love go through MM, I feel I've done it for so long now that I'd be lost without my caring role. "The End" does worry me slightly for many reasons, but as the consultant says "one day at a time", so thats all I can do. I can't wait to get him home though, build his strength and ease him out of the depression then get him started back on the road to recovery on chemo again, bless him … what a life!
Sending love Bridget, and a healing hug too xoxo
