National Amyloidosis Centre Patient Forum
Amyloidosis => General Discussions => Topic started by: TerrySmith on November 20, 2016, 10:13:55 am
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Having been diagnosed with AL Amyloidosis I attended the NAC at the Royal Free on Thursday and Friday last week. I knew that my kidneys were affected but to discover that it was also in my heart liver and spleen came as a shock, even though I knew it was possible. The doctor didn't pull any punches, warning me that it could be months - even years - before I might feel any benefit from chemo. I hope to start this pretty soon in the hope that it might arrest the decline in my kidneys, the function of which is only slightly above the figure at which they'd advise dialysis. If I can avoid dialysis on top of everything else that would provide a huge boost. I wonder, has anyone else been in a similar position and if so, what can I expect in results? Many thanks in advance for any answers.
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Hello Terry,
I am very sorry indeed to read that you have multi organ involvement. Many have walked your walk and ultimately achieved good outcomes leading to a good quality of life eventually. There is no doubt it can take a very long time. No-one can predict how long. You must hope for the best.
Everyone's response to treatment is different because the pattern of disease is unique for each one of us. My version of the disease is very rare and vastly different from yours so I am not in a position to comment on what you can expect from your treatment. However over the years, I have known many in a similar position to you get better and resume a good quality of life.
As someone who has struggled with this cruel disease for 14 years and no treatment available to help me with my suffering, I certainly can empathise with how you feel with compassion and understanding. I hope most sincerely that your kidneys will be spared and given the chance to heal post treatment. The key to successful treatment is the same for all with AL, to shut down the amyloid production factory in the bone marrow to enable elevated free lights to reduce to within normal range. If you achieve a good response to treatment and maybe even better, then over time amyloid has a good chance of regressing from your organs. The elevated free light chains may be toxic in themselves, so with those hopefully reduced to within normal range or near to it by the end of your treatment you should start to feel a little better. Amyloid regression from your organs will definitely take longer but over time I hope it will happen for you.
My warmest wishes to you as you start your very challenging journey for the very best outcome. :)
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Hi Terry
Sorry to hear your bad news.
I was diagnosed nearly 10 years ago now.
My Amyloidosis also affects my heart, kidneys & spleen.
I've now had 3 lots of chemo over this period.
My kidney function has dipped to just over dialysis levels a few times but currently in the thirties.
I'm currently on a clinical trial to hopefully disperse amyloid in the organs.
Please feel free to contact me if you need any information about the illness or treatments etc & I'll try and help if I can.
Cheers
Gary
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Many thanks for those encouraging comments. I'm off to see my haematologist this morning so hopefully.........................
Will keep you all posted.
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Hi Gary,
Please to hear you have had 3 infusions of NEOD001 antibody. I guess it may be too soon th know if there has been any clearance of the deposits yet? I believe it takes longer than that to work.
Please do keep us posted. You are one of the lucky ones to be on this trial for a drug which clears amyloid deposits. How I long to have such a drug too. After more than 14 years with my misery, there is nothing out there available for me yet. :'(
Very hard when you know there are treatments out there which have the potential to help you but you don't fit the criteria. I never will because of my very rare manifestation. That makes it even harder to bear as approval of new treatments is such a long way off.
My warmest wishes to you for the very best outcome. :)
Good luck to you Terry too. I hope your treatment will start very soon. :)
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Thanks Pat, sorry to hear of your predicament.
I am going to the Royal Free for my 3rd infusion this week.
I've had virtually no ailments up to now so maybe on the placebo but nobody knows other than the drug company. It's a double blind trial.
If I'm not on the drug I do get the chance to go on it after 12 months.
Hopefully in the future ALL will be able to get something like this to help disperse the amyloid.
Best wishes
Gary.
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HI Terry
I do know my biggest deposit of Amyloid is in my kidneys. (I have it in kidney, liver, spleen, bones and spine with touch in the heart).
When I went for chemo and then onto my stem cell transplant, my Dr warned me I could end up being on dialysis during my stem cell transplant and could end up on permanent dialysis after.
I did have a pretty tough time during my STC but Im pleased to say I escaped dialysis.
I'm not sure this answers your question but hopefully gives you some hope
All the best
Lesley
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Thanks for that Lesley. Although I accept that everyone's different and might react differently to chemo, it does give hope that if I'm lucky I'll escape dialysis and in the long run see an improvement. Whatever, it seems I'm going to have to be patient and take every day as it comes. Thanks to everyone who's offered support.
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I was lucky enough to be diagnosed before my kidneys suffered any serious damage. However my proteinuria was nevertheless over 5g/24 hours at diagnosis. Six months after completing treatment it was down by 30% and has been falling further (albeit slowly) ever since. So if you get a good response to treatment it is not unreasonable to hope for an organ response within a few months.
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Just an update to my early posts. I began my first cycle of chemo at Treliske Hospital in Truro on Wednesday, 30th November. They kept me in for 48 hours to monitor my heart owing to Amyloid being present in that organ. Delighted to say that my heart responded well and I left hospital on Friday afternoon feeling a little 'whacked' but otherwise in pretty good nick - at least superficially. So far the only side-effect I've noticed is an increased tiredness which I'm guessing is only to be expected.
I hope this post helps others who are about to commence with their chemo.
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Hi Terry,
My husband is also a patient of the hospital in Treliske, with amyloid in his kidneys and spleen.
Good luck with your treatment,my husbands consultant has looked after my husband very well, so you are in the best of hands.
My husband limits his fluids to 1,200 ml a day, he weighs himself daily to monitor his situation.
Luckily since his stem cell transplant he has not needed to take diuretics, which is a god send! however his kidneys have suffered and his last GFR test was 33.
All the very best to you.
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Hello Missytwizzle.
Thanks very much for your input - it's very welcome.
Following the advice of the NAC I limit my fluid intake to 1.500 ml a day or slightly less. This doesn't include what liquid may be in food; for instance, how do you measure the amount of juice in a tomato? I was told at Treliske not to worry too much about the liquid that may be in food but concentrate on fluid in drinks. Therefore I measure my drinks in a measuring jug, including the juice from any fruit at breakfast and the water I take with my tablets. I too weigh myself daily.
From my own perspective it's very early days but your comments are certainly encouraging.
Please pass my best wishes to your husband.
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Hi Terry,
Hi Terry
My husband does not worry too much about liquid in food, for instance he has a bowl of custard with his pudding a day,which probably brings him up to 1,500 ml a day.
It was difficult at first,he had heavy oedema ,and the renal consultant at Treliske set the 1,200 limit.
Also he does not add any salt to his food ,and has very little processed food,this certainly helps.
He only drinks water and horlicks! he drinks full glasses of water with his tablets, and has no more liquid left for tea or coffee,but he has adjusted to this regime very well.
Good luck with your treatment,are you on Velcade dexamethasone and cyclophosphamide?
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Hi missytwizzle,
I saw my haematologist today and discovered my kidneys had deteriorated further. After consultation with a nephrologist she prescribed me tablets of sodium bicarbonate to help reduce acid. I also saw a renal dietician who advised on what what to eat and drink and what not to eat and drink. It seems I've been eating and drinking a lot of things I shouldn't have but I didn't know that at the time. So, it's a new eating and drinking regime from now on in the hope that it helps turn the tables.
I don't add salt to my food - haven't done for several weeks - and from now on all processed foods are out.
My present chemo comprises Velcade, Dexamethasone and Thalidomide. This is in addition to other prescribed medicines. I've just today started on my second week of the first cycle of treatment - five three-weekly cycles in all without a break - so there's still a very long way to go.
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Hi Terry,
I am very pleased that you are receiving Velcade! Hopefully you can get your light chains down very soon.
My husband returns to Treliske in the new year,he now has 3month check ups,and still sends blood up each month to the NAC.
His light chains went up a bit last month,we are hoping they come down again this month.
I find it quite nerve racking when results come through.
All the very best.
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Hello missytwizzle,
Thank you for your very good wishes.
Being new to this 'game' I'm still coming to terms with the procedures. I know they're trying to reduce the light chains as quickly as possible but how is the success or otherwise of this determined? I'm guessing its via the weekly blood tests.Whatever, I'll ask my haematologist next Wednesday.
Incidentally, did your husband find that the Velcade injections made him tired? For instance, after Wednesday's injection I didn't feel too bad yesterday morning so accompanied my wife to the supermarket. It involved an hour or more of easily-paced walking but I believe I perhaps overdid it as for the rest of the day I felt 'whacked'. Last night I slept for ten hours solid. I'm going to take things easier today.
The best of wishes to you both and here's hoping your husband receives good news from Treliske in the New Year.
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Hi Terry,
Hope you are feeling less tired today.
My husband and myself always felt extremely tired after spending most of the day at "Treliske" on his treatment days.It can be a very long day waiting for treatment, so I am not surprised you are feeling tired.
He found that a good nap in the afternoon helped.He still finds that he needs to take a nap most afternoons.
At the end of each treatment cycle my husband sent blood samples to the NAC.
Did the NAC give you blood bottles for this purpose?
These blood samples are checked to see if your light chains have fallen,and this is how they determine if the treatment is working.
If you were given blood bottles, you also should have been given treatment forms,at the end of each cycle ,give one to your consultant, who will fill it in for you, and then add it with your blood sample to post in the package.
It is early days for you, and you can feel in a very lonely place at times but at least we have friends on this forum who are all coming to terms with this cruel disease, and fully understand our hopes and fears.
All the best.
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Hi Terry
During treatment my light chains were checked at the end of each cycle (i.e. every four weeks).
I did not experience any significant tiredness from the velcade though it was a convenient domestic excuse for having a nap if there was washing up to be done ;)
Keep us posted on progress
Best regards
David
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Good morning missytwizzle and David,
Yes, I was given blood sample bottles at the NAC along with half-a-dozen treatment forms. I'll be sending the first of these off to the NAC on Wednesday next week, at the end of the first cycle of treatment.
As after my initial Velcade injection, I didn't feel so tired after a couple of days and this morning, Sunday, I don't feel too bad at all. I'm guessing it's all down to the uniqueness of the disease and how it affects us, and how each individual reacts to their medicines.
Thanks for your encouraging comments; I'll certainly keep you all posted.
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Good Morning Each,
As promised a quick update on my chemo regime. Owing to a misunderstanding on my part, and contrary to what I said earlier, I have to have five, five-weekly cycles of chemo with the fifth week free from Velcade; not five, three-weekly cycles without a break as previously advised.
I received my fourth and final injection of Velcade of the first cycle yesterday so next week will have a 'week off'. At that stage I'll send off my first blood sample and form to the NAC and await results. I must say that following each injection I've felt increasingly 'groggy', especially for the first couple of days following which there are some days better than others.
Earlier this week I had a phone call from Darren Foard at the NAC. He wanted to know if I'd started my chemo and if so how was I coping with it. He made the point that some days will indeed be better than others whilst on others I might feel quite rotten. Frankly, this is no different from what I expected but if it does its job in the long run then it obviously has to be worth it.
I hope these comments won't be off-putting to others who are facing chemo;and given that as each case is unique others may well react differently and suffer no nasty after-effects. Reading through some of the other posts I gather this is sometimes the case. Whatever, I'll keep you posted of developments.
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I wonder if it is the velcade or the thalidomide that causes the grogginess.
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I'm guessing it's the Velcade, David, as the grogginess tends to ease after a few days whereas I take the Thalidomide every night.
Best Wishes
Terry
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As promised, an update on my progress to date. Following my first cycle of treatment I was delighted to learn that my kappa level has fallen from 1,205 in mid-November to 297 late-December, a drop of 75%. On Thursday my haematologist told me that since then it has probably fallen even further. I'm not getting overexcited but I'm told this result is very encouraging. On the debit side,my kidneys are still balanced on a knife-edge. I had the second Velcade injection of my second cycle of chemo on Thursday so feeling a bit groggy at present. Otherwise not too bad.