[PatGParticipant]

Hi Rosemary, lovely to hear from you and hoping the CVD has done the trick. My biggest problem at the moment is my kidneys and not the Amy although the light chains are rising slowly again. General concern us of opinion is that this may be due to the kidney problems and not necessarily the Amy. Will wait and see. I dialyse 3 times a week but my biggest worry is my lack of appetite. Very worrying as I was very slight before. Have to make sure the plug is in the bath now just in case I get flushed down the drain. Seeing the neph doc on Monday and hoping they have a solution. Apparently it is quite common with kidney patients. Not due at NAC until November so the picture should be somewhat clearer by then. Don’t post much on here but I do follow the stories. Everyone’s journey is so different but so similar. Hope you get the very best news at NAC. A friend was telling me about a cinema just down the road from the hotel that serves the most delicious teas. She couldn’t remember the name but I shall go and explore in November.
Good luck and keep well
Pat

[PatGParticipant]

As your sister is over 70 have you tries Age UK? I took out a policy with them to cover a cruise in June and have just had to cancel as my kidneys decided they have had enough and I had to start dialysis on Christmas Eve. The claims lady has been terrific and the cover offered is comprehensive. Worth a try?

[PatGParticipant]

Hi Linsey,
I’m not sure I will be able to help much as I have no cardiac involvement. Mine is kidneys, liver, spleen with minimal nerve involvement. It has destroyed my kidneys and I am in pre-dialysis talks at the moment. That said the Amy is stable and has been since finishing treatment in June 2013.
I had to have the twice weekly cel are injections reduced to once weekly as I was not tolerating it well but apart from stringing the treatment out it didn’t seem to make any difference. The main side effects for me were peripheral neuropathy from the velcade and sleeplessness from the dex. I loved the energy burst from the dex but didn’t like the come down days. Overall, I was tired and some days I admit I felt like pulling the duvet over my head, but so what? The next day was better.
The only real advice I can give you is go with the flow, listen to your body and do what you feel like doing when you can. Try to plan exciting things for your energy dex days and don’t waste them on housework. I actually had cleaners while on treatment and ordered my groceries on line but then I am much older than you (69)so you may have more energy than me. Try and leave the stress behind. You can’t change what is happening but you can accept and look forward to the end of treatment and a return to some sort of normality. Believe me I do remember what it all felt like and it took a little time to accept, but was so much better once I did. I am going through a similar phase with all the dialysis decisions at the moment and trying to regain the acceptance part. It’s scary because it’s unkown territory as it is with you at the moment. It will get better Linsey and hopefully give you a good outcome.
Sorry I can’t be of more help but please ask if there is anything else and I will do my best to answer.
Take care my dear, and keep positive. It really helps.
Pat xx

[PatGParticipant]

I had to look up LCDD and now I can see the worries about your kidneys. But you know renal failure will not kill you, that’s what dialysis is for! Not the most pleasant of paths but much much better than the alternative.
I found I was much more breathless while on VCD chemo but that has got considerably better until a few weeks ago. I have to have a special radio active type x-Ray to rule out pulmonary embolism as this can be a complication with kidney problems. The doc is just being very cautious as nothing was heard on examination and the ordinary x-Ray did not show anything. She has started me on soluble aspirin just in case!
I haven’t noticed any funny breath smells Sharon and I’m sure that if it renal related the renal docs would have come across it before now. Could it be a side effect of the chemo? Is the chemo affecting your appetite as well? So many side effects to these drugs and we all react differently don’t we?
Just come back from bingo (my Friday night treat). Didn’t win a thing but a good old natter with my friends is worth its weight in gold.
Keep positive and don’t try to eat all the elephant in one go. Take it piece by piece.
Xx

[PatGParticipant]

Hi Sharon,
Still no further along dialysis route but SCT is definitely out of the equation. Added to everything else I seem to have had a heart attack at some time ?? How do you have a heart attack and not know it for heavens sake? It was discovered following an ECG taken at GP surgery on a yearly MOT check up. Now I am having cardiac investigations and also lung investigations as I have been getting more breathless recently. Apart from all that I am feeling quite well really. A bit lacking in energy but overall OK. Hope dialysis is based on symptoms and not on eGFR . That way I should be able to last a bit longer. I am at NAC on 25th so hope to get a better picture there. A little bit worried as my monthly blood test showed FLC rising slightly but I really can’t dwell on any of this. To take it all on would bury me I think. I just take the immediate problem and try and get that sorted.
Anyway Sharon, I hope that your kidney outcome is going to be better than mine, but as I am 69 now I think it may be different for you regarding your SCT – and at least we are still
here and fighting eh?
Pat xx

[PatGParticipant]

Hi Sharon,
Sorry no one has come back to you before now. I don’t think there are too many people on here with Amy. I was diagnosed 2 years ago now with kidney, spleen and nerve involvement and have had VCD for 8 cycles. My Amy is stabilised at the moment but the kidney damage appears to be getting worse. I am due to have counselling regarding dialysis options, but this is not immediately imminent thank goodness. I think they are just getting all their ducks in a row as it were. I’m off to NAC next month to see what they say there and yes, they are very good. Always felt in good hands when I visit.
I do hope Eric has a positive outcome when he next visits NAC and he gets on the trial and you never know, we might just meet up one day.

[PatGParticipant]

Oh Sharron, it’s like a window on my life! You are a bit ahead of me as I have an initial consult with the transplant team on 23rd September after our return from holiday. Until then I am putting the whole thing to the back of my mind and concentrating on the holiday. I feel OK except like you I am unable to do all the things I used to do before and Kev helps a lot with the cleaning etc. I have started teaching him about washing and tumble drying but I despair of the cooking. I will have to make sure the freezer is stocked well.
Your bedroom sounds lovely and such a great idea. Pleasant surroundings make all the difference don’t they?
Enjoy your birthday and holiday and I really hope all goes well with you in August. Take your i-pad(which I am sure you will get for your birthday) and keep us up to date when you are able. That’s one of the positives of this forum that we know what to expect from the coal face as it were and not just what the docs tell us in their sanitized way.
Look forward to hearing how well you ride this part of the roller coaster and all my thoughts will be with you (well maybe not ALL, I will be on holiday with so many new sights to see).
Take care Sharron, keep smiling and keep positive.
Love
Pat xx

• This reply was modified 10 years, 4 months ago by  PatG.

[PatGParticipant]

Hi Joyce, so sorry to hear about the loss of your husband. It must be hard for you especially as you are fighting such a tough disease. I have AL Amy but no Myeloma and was treated with 8 cycles of VCD finishing last June. Unfortunately my protein output is now very high and my eGFR is falling. I will be seeing the transplant team on 23 September with a view to going forward to SCT.
The tingling, swollen legs and ankles could be due to kidney involvement. My ankles were swollen at diagnosis but I still have tingly feet ankles and fingers due to peripheral neuropathy.
I am sure there will be someone on here who has the treatment without cyclophosphamide. Personally I found that part if the treatment ok. It was the other two components that gave me side effects.
Hope all goes well for you with whichever treatment you decide on. Keep positive
Regards
Pat

[PatGParticipant]

Thank you John and Rebecca . I think I was panicking about the whole thing when I posted but have come to terms with it more now, especially after ‘talking’to a fellow sufferer who had SCT at about the same age and with the same Amy involvement and at the same hospital. I see the consultant next week and will have more news then. Like you Rebecca I have planned on stocking the freezer and buying jammies and pants for while I am in hospital.
Keep well everyone
Pat xx

[PatGParticipant]

Hi Sandra, I don’t have cardiac Al mine is kidneys, liver, spleen and nervous system so I can’t help with the cardiac symptoms I’m afraid. I was diagnosed Sept 2012 nod had 8 cycles of VCD. Velcade had to be reduced to once weekly as my body could not take the twice weekly treatment. The cyclophosphamide thinned my hair, the velcade increased my peripheral neuropathy and the dex gave me so much energy but kept me awake at night! All in all not too bad and here I am now feeling so much better with the AL ‘stable’ everything being monitored with blood tests going to NAC each month and the others every 3months. I am 68 now and glad I am now in a place where I am not so absolutely terrified. It does get better as you learn what your body is telling you. You HAVE to listen to your body and realise that there will be limits on your activities for a little while. The terror at this stage does not help, but learn all you can and be assured that there IS a tomorrow and a tomorrow and a tomorrow. Good luck with your treatment and let us know how you are progressing.
Love
Pat

[PatGParticipant]

Hi Helen,
It’s such a nuisance isn’t it? But to be honest I have been very lucky and the Amy is labelled ‘stable’ at the moment. The kidneys seem to be taking a bit of a bashing, but no treatment on the cards as yet so fingers crossed.
Although I haven’t posted for ages I have been following everyone’s journey and laughed and cried with the rest of the community. There are so many people having such a difficult time compared to me I sometimes feel a bit of a fraud. No doubt my time will come, but in the meantime I am very grateful that the powers that be have decided that that is not my journey at the moment. As Andy says ‘every day is a gift’ and I am loving the presents!
Love
Pat

[PatGParticipant]

Hi Jan,
I was diagnosed in August last year following various tests from June onwards and confirmed by a kidney biopsy and BMB. They had to alter the initial dose from twice weekly to once a week for three weeks because I ended up in hospital with pneumonia. It made it a longer journey but at least my body was able to cope with it. My treatment finished in June this year.
So – you have already got past the 'only eight weeks to live' bit and the treatment is nearly finished when hopefully the amyloid will be stable (that's the most we can hope for isn't it) and Mike is about to start dialysis. Not something I would look forward to either, but it is bound to make him feel better when all the toxins are flushed out from his system. All you have to do then is coddle his heart until he is stronger. I watched a programme the other night where a woman on dialysis was on holiday in Benidorm and they have a dialysis suite at the local hospital where you can arrange treatment under the ordinary EU medical card thing(can't remember what it's called)so maybe a bit of sun could be on the cards for you.
I do hope everything goes well for you both. I am trying to keep my excitement levels down to somewhere manageable and failing miserably. I did have my flu injection today and have a pneumonia one and something else to look forward to when I get back!
Love and hugs
Pat xx

[PatGParticipant]

Hi Jan,
I too have AL Amyloidosis which has affected kidneys, liver, spleen, nervous system and blood vessels. I had CVD x 8 cycles which finished in June, and at the moment I am pronounced stable. My kidneys are not as damaged as Mikes and are working at 34% which remains stable. My heart was not involved so I am lucky in that way. The doctors have told me that the amyloid deposited on the organs will eventually reasorb but takes an incredibly long time and the kidneys can regenerate to some extent once they are amyloid free.
During treatment I was very tired and breathless and I think some of this is due to the CVD as although I still get breathless at times now I can exert myself a lot more before it kicks in. The peripheral neuropathy was very hard to deal with but has dropped off now and I think it is probably as good as it is going to get. Hands are OK now but still a few problems with the feet. I visit the Royal Free twice a year to be monitored and so far so good.
It's very bleak for you at the moment I know, especially with the heart involvement, but once the CVD has done its job and Mike can recover from the effects of these drugs I am sure he will feel better. It will be a different life, but it will be a life Jan and you will both adapt. I am 68 and to be honest, there were times when I thought I could not cope with the treatment, but I am glad I did as I feel so much better now. I went to Canada on my own in August to see my granddaughter (and daughter of course!)She was adopted in January as a very tiny baby,1lb 12oz when she was born, and is now a strapping nearly one year old. I am very determined that she will have her Grandma England around for a very long time – and not just on FaceTime! Kev and I are going to USA on 24th for a trip of a lifetime concluding with a small cruise in the Gulf of Mexico. So you can plan eventually, but get the treatment over first and then do what you thought you would not be able to do.
I do hope this has helped in some small way. There is light at the end of the tunnel even for an old codger like me.
My very best wishes to you both and all positive thoughts winging your way.
Pat xx

[PatGParticipant]

Dai, such wonderful news. Janet will have to stop you jumping up and down I think!
Velcade has worked for me so far as I am sure it will for many others God willing. I had my last injection this week with FLC's all back within normal range at 24. I had velcade weekly for 4weeks with the 5th week off, and at a reduced dose as I couldn't tolerate the full whack, and it STILL worked! Two more weeks on the cyclophosphamide and dex then it's all over for a little while (I hope). I really hope you continue to get wonderful results Dai. I am sure we will all be rooting for you.
Love
Pat xx

[PatGParticipant]

Planning on 25th August. That way I get two birthdays! Not entirely sure that is a good thing at my age, but who cares?
Love Pat x

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