Hi Tebebe,
So sorry you have had to join this forum. I am sure we will be able to help in all sorts of ways.
I have AL Amyloidosis and was diagnosed in August 2012. I have been having Velcade, Cyclophosphamine and Dexamethasone as treatment. Frequency and dose have had to be altered as the initial regimen didn't suit my body at all. I am coping fairly well with the new regimen but have had a hiccup lately after a bad cold/minor chest infection. As with any of these treatments, it is not pleasant, a bit debilitating, but infinately do-able. The amyloids are on my kidneys, liver and spleen. Kidney function is my main problem but that is being monitored. Have you been invited to the National Amyloidosis Centre at the Royal Free Hospital in London? It was a good experience for me and I finally discovered which organs were affected which seemed to help enormously.
Everyone is different when it comes to explaining to family members. My daughter is grown and living in Canada so it was hard for me to explain in a way that would not have her getting on the next flight over for no reason, but she only deals with things when she knows the full picture. So – I gave her my explanation and the web address of the videos on this site dealing with amyloidosis. It does depend on the age of your children though. Please remember, this is not a death sentence Tebebe, it is manageable and although life will not be the same as before, it will still be a life we can enjoy if we look for the good things that come our way. I am afraid that I am in Loughborough and attend hospitals in Leicester so am not physically close, but side by side with you on your journey.
Although this site has mostly Myeloma suffers, the treatments are so very similar, there is always someone who can answer your questions. The nurses on here are very good too. I have spoken to them a couple of times.
The most important thing is to stay positive. It is the strongest weapon you have against this horrible disease. If I can help in ANY way please contact me and I will do my very best.
Much love
Pat xx
Bears are good Jo. I am more like a stick insect at the moment! Going to get a couple of pairs of jeans in a smaller size today. Fed up with the ones I have at the moment hanging off my bum. Hope the velcade gets better love. You don't need any more things to put up with. Thought I would start on Xmas yesterday and made some sausage rolls. Big mistake! There are only 4 left now. Kev filled his boots the little gannet! Never mind, they are easy enough. Think I'll hold off on the mince pies though. Keep in touch Jo. You always manage to make me smile.
Much love
Pat xx
Hi Jo,
Sorry to hear about your transfusions. Hope that improves for you. All good news from NAC in that my bloods show I am responding well to treatment. The scan shows that the amyloids are centered in my kidneys (already knew that with function at 51%),also liver and spleen with no adverse effects to the last two organs yet. The follow up is monthly bloods sent by post and another scan in 6 months time. Depending on the blood results I may not have to have the full 8 cycles and could possibly get away with 6 (which would be nice). Alternatively if I stop responding they will change the treatment with my consultant here. End goal of course, as with MM, is to reduce the light chains and para-proteins which give the amyloid deposits chance to disperse and the organs recover.
Overall a very positive experience, but so much waiting around with a few tests the first day and the scan and consult the second day. Had I been feeling better there would have been plenty of time to explore a bit of London, maybe next time? I would advise anyone to try and get the one day appointments which make for a long day with travelling but would get it all over and done with quicker. You need to be feeling really well for that though. The scan was brilliant. I was dreading it as I hated the MRI scan I had on my spine, but their scanner is very open and you don't get the claustrophobic feeling you get with the MRI scanner. So all in all, feeling much better now that I know exactly where the little b's are. Why that should help I don't know, but it does.
Have to get ready for Christmas now, which includes a bit of decorating as we had a new central heating heating system fitted last week. What with that and my cooker giving up the ghost as well, I am just thankful to get back to normal. At least the cooker went before Christmas day, so that was a bonus! Let's hope we can all have a lovely Christmas, quiet or not, and a happier, healthlier New Year.
Love to you and yours Jo and to all fellow travellers.
Pat
xx
Hi Jo, hope the MM conference goes well today. I live in Loughborough so quite a long way from you. Had a cardiac MRI yesterday and a very weird reaction to follow. Thought I was going to end up in hospital but managed to ride it out. Let us know how the conference went.
Love and hugs
Pat xx
Hi Jo, I can't remember how much cylco(Just thrown the box away) but I have to take 8 tablets on days 1/8/15, that's following three out of the four subcut injections that make up each cycle. Dex has been reduced to 10 mg for two days after each velcade. Consultant said that if I was managing OK on this dose she was going to increase the dex for the next cycle. I must say I have been fine on this regime and to be honest the dex has a beneficial effect that I look forward to. Don't look forward to the down day which seems to hit on the Friday after Tues/Weds medication, but that is a small price to pay. Was your wait to come home due to transport or waiting for medication to arrive? I have a friend who is able to take me but have to have transport to come home and I normally have to wait about an hour before the ambulance taxi comes to pick me up. I telephone the ward in the morning just to check the bloods are Ok and they tell me what time to come in (usually about 2 o'clock) and the latest I have been back in home is 4 o'clock so I don't think that is too bad. I am pleased to hear you are keeping up appearances Jo. We have to stamp our personalities on this somehow. As for the hair, well I have coloured mine since starting treatment and I still have it. And let's face it, if it does come out, you can get some very funky wigs these days. When I had chemo for breast cancer in 2003 I lost my hair and my other half was playing in a heavy metal band at the time. I remember I bought a VERY funky Tina Turner multicoloured wig for a gig at a bike rally which went down a storm. I did have more refined ones for shopping at Morrisons though! Watch your skin Jo. Mine has gone really dry and in places looks like it's peeling like you get with sunburn especially at the subcut sites. Using an awful lot of moisturiser at the moment. Well time for a drink before bed. Keep in touch love and keep well.
Love and hugs
Patxx
Hi Jo, Had no 3 of 4 today and since the dose of both velcade and dex has been reduced I am coping much better. Hope you do too and if I can help with anything I will be only too glad. Got my purple jeans on today – they do help to lift your spirits!
Keep well
Love and hugs
Pat xx
Hi Peter, It was so encouraging to hear about your side effects and realise that these are 'normal'. It makes it easier to deal with when you know that. I wish you well with SCT in January. I know from reading on here that it is not an easy journey, but oh so worth while. Tom's 'Onwards and Upwards' keeps me going so many times – maybe I should get a tattoo? That would put the cat among the pigeons wouldn't it?
Love and hugs to all
Pat
xx
Thanks Mavis. As you say it is the little things that tip you over and make it feel like a real uphill battle. Silly really, but that's human nature isn't it? I read your good news in another post and I am so pleased for you. Long may it continue.
Love and hugs
Pat
xxx
Thanks for your reply Ali. It does sound similar to your Mum I must say. Once you know someone else is experiencing the same things as you, you relax a little and realise that this is your 'norm'. It is just finding out what that is for you and can be quite unsettling.:-S I do feel better today thank goodness-just in time for velcade again tomorrow! I am really looking forward to my week off treatment when I can hopefully get to feeling more like myself before we start the third cycle. In the mean time I will continue to clean my jewllery every day with my trusty silver cloth:-)
Tom, thanks for your comments. It is hard not to snap at loved ones isn't it? I always try to remember that in a lot of ways it is much harder for them watching you going through it and not being able to do anything than it is for you dealing with it. I know I have hurt Kev with some of my comments but we have talked about it and have a buzz word to use when it is getting into that sort of territory. We can both back off then and discuss it later. It seems to work for us and that's a good thing.:-D
Right! Time to do a bit now while I have the energy. The towels will not wash themselves will they? Thanks for all your encouragement – just what I needed.
Love and hugs to all
Pat xxx
Hi Clara, Thanks for your reply. Unfortunately I was being very optomistic and I have had every bloomin' side effect in the book since then! I also got a chest infection and spent a week in hospital then last week spent a day in hospital rehydrating as the tabs given to reduce the swelling in my feet and legs were taking too much fluid out and left my blood pressure dangerously low. The consultant has reduced both the dose of velcade and dex to once a week and also reduced the dose. Having had the second one of the cycle yesterday I do feel that my body is handling this much better. I am very tired and weak and at 67 feel that work can wait until I am stronger. I make the most of my dex days when my appetite improves and I have more energy (well at least I feel I do)and am able to little jobs around the house. It feels like an experiment to get the right dose for each individual and velcade is still an experimental drug so I suppose we should expect that. Once they get the correct dose for your body it is not so bad. Having said all that there has already been significant improvement in my protein levels (down to 1) and a marked improvement in albumin levels – so something is working. 🙂 From reading the posts on here velcade is given as a second line treatment for MM and first line when there is cardiac involvement for AL. I wish your dad the very best of luck with this and hope they get the dose that suits him quickly. Do tell him to let the consultant know about any side effects as this may need adjusting. The sooner he is at the right stage for SCT the better.
Send him my best wishes and I hope all goes well.
Love and hugs
Pat xx
Hi Gayle, thanks so much for your advice. I did contact the local council and the lady I spoke to there was really very helpful. She is sending the form through and told me which sections to complete. She even offered to go through it with me should I need her to. I am not eligible for an allowance as working for Loughborough University I am still being paid. I think I got thrown off track with the consultant saying to ask for the single sheet GP form, which apparently is no longer in existance. After venturing into town today I can see how very helpful a blue badge would be as I couldn't manage to go to all the places I would have liked as they were too far apart to walk. I am really struggling with the dependancy aspects of this illness, being so independant previously, and anything that can ease that a little would be so welcome.
Here's hoping for a succesful outcome.
Pat
xx
Hi Eve,I think we may have finally got to the bottom of the pain. The consultant reckoned it was nerve pain from the PN and also the swelling in my feet/legs. Mind, I think the e-mail I sent her at 4 o'clock in the morning may have brought it home and spurred some action. She is good though in that she asked for the GP number (which the surgery gave me, no problem)and as a result my GP prescribed Tramadol which, thank God seems to have worked and I have been pain free tonight.
I do feel though, that this illness is making me so assertive. Don't get me wrong, I was never backward in coming forward, but just knowing you are fighting for YOUR life and the effect this disease is having on it makes you react somewhat differently. I suppose at the end of the day, if you don't fight for it, no one else will, but sometimes I wonder if I am going to end up a positive virago before this journey is over. Best keep that in check or Kev may have a few words for me don't you think? It might be 3 o'clock in the morning and I can't sleep, but at least I am not in pain and that is sooo positive.
Love Pat
Thanks to everyone for their advice. I spoke to the local council today and apparently the one sheet claim form is no longer available. They were very helpful though and are sending me the forms. I really hope I am successful as it will make such a difference.
Keep well
Pat
xx
Thanks Tom. I already have my bus pass as I am perhaps just a 'little' more senior than you ha ha.
Pat
x
Thanks Sarah, will get in touch with them and see what they say.
