Thanks for the replies,
The Maxio Facial Consultant has said he will be contacting all involved with my Dads treatment including the dentist, Unfortunatley my Dad wasn't given info sheets to provide to the Dentist and told him he was starting chemo, so its just been a failure of communication that has resulted in my Dad having a further condition to deal with.
llly68 I'm glad you have used this post to air your feelings, my Dad also had to stop treatment due to infection and we also worried that this would hinder his progress but fortunately it didn't. I have come to realise that GP's and different consultants don't communicate with each other, my Dad is very much like your Dad and doesn't want to phone about anything because he thinks they are too busy and doesn't want to bother them. I spoke to my Dads nurse and asked if it would be ok if I contacted her if I had any worries but did'nt want my Dad to know and she has been brilliant, when I called and told her about my Dad's PN and he couldn't sleep etc she brought forward his regular appointment (my Dad did'nt know I had contacted her and this was the reason his appointment was changed).
I go with my Dad to all his "big" appointments because he just tells them he's doing fine otherwise. He did'nt like it at first and I told him I wasn't going for his benefit but mine because I wanted to know what was happening and now its a standing joke that I'm his PA.
I have found out so much info from this forum its a god send! My Dad had an ongoing pain in his hip, and because of info on here I pushed the consultant to find out if he had a mass there and low and behold he did have! He then got radiotherapy which has helped with the pain but I doubt this would've been done if I hadn't been informed enough to quiz the consultant.
Its such a worry and horrible to see my Dad who has always been a strong fit man have to cope with MM and his other conditions I'm sure you feel the same and its frustrating when different medical areas don't communicate with each other, I have now came to realise they are so busy and under so much pressure I take it upon myself to make sure all involved with my Dad know whats been going on he's my priority, they have so many people to look after no wonder things get missed.
If you ever need to let off some steam feel free to let it out here, everyone is so supportive in what can be stressful uncertain times xxx
Hi Millie,
My Dad suffered with this and asked doctors for capsicum cream, to rub on his feet It is hot as its made from a from of chillies so should be used very sparingly but helps (well helped him!) Also drinking lots of water is advisable. On a positive note PN did get better after about 6 months. Hope this helps C x
Hi Maureen,
Thanks fie your good wishes, yes we live in Lanarkshire in Scotland. Dad is going to have his stem cells harvested and then make a decision on whether to go ahead with SCT once all his results are in x
Hi Eve,
Thank you for your kind reply on my post. I am looking through the forum and I am sorry to hear MM has reared it's ugly head again for Slim and yourself. As I'm sure you are aware there is plenty of support on here for you both.
Sending you kind wishes and support,
Clara x
Hi Mohammad,
My Dad also suffers with PN, there is info from a Professor on Myeloma Uk Tv (look at bottom of the page). Has your mum tried Capsaicin cream or Vicks on the soles of her feet? Capsaicin cream is only available on prescription here. Perhaps you could get this in Iran.
Best Wishes
Clara
Hi Eve, my name is Clara, thank you so much for your reply Dad is going to have his stem cells harvested and then take some more time to decide whether to have SCT x
Hi Pat,
Sorry I haven't been on here for sometime I'm just catching up on posts, my Dad was diagnosed with AL amyloid and MM a year and a half ago and you are correct both are treated the same way. My dad had a course of CTD which gave him a complete response. He will be starting velcade in the next few weeks after AL levels have reared there ugly heads again and like you he'll do anything to zap the little b@@@@rds invading his system. He has been told velcade will help with the myeloma as well as the AL. My dad has deposits in his tongue and kidneys.
I will follow your posts regarding velcade effects as any info would be great, if you want to ask me anything I'll try my best to answer as I know AL amyloid patients are few and far between its such a rare condition, My Dad is tired out but still manages to work 2 days a week as he's not wanting to retire yet but he might need to review this as he's going to have a SCT for AL early next year velcade is one step in the process to his SCT.
Good luck and best wishes
Clara xx
Hi Cinzia, you are most welcome I know how difficult it is to try and find other people with AL and when you have MM to deal with to it's alot! I can only imagine how you must be feeling having children and trying your best to be strong for them and your husband I do hope your heart heals and you get your SCT do they have SAP scanners in Australia? My Dad's tongue has remained the same his consultant said some people see a reduction but dad's has remained enlarged he can swallow but feels as though there is to much saliva in his mouth at times I suppose it's a positive that treatment for AL & MM go hand in hand and deals with both conditions it's great that 2 Lots of velcade have worked for you I hope this is the same for my Dad I know everyone responds differently. My dad's not on the internet or this forum but if you need to know anything else both himself and I are happy to help as the conditions rare it's good to have someone to check in with now and again,
Wishing you all the best
Love C xxx
Hi Cinzia, Sorry I haven't been on here in a while I have only just seen your post. My dad aged 63 had MM and AL Amyloid. He had CDT last year with a hope to harvest stem cells after his kidney function improved, he has Amyloid deposits in his tongue and some in his kidney, can I ask where they have detected yours? My Dad has to travel to London every 6months to have a SAP scan which is the only scanner in the UK we have met people who have travelled from USA to have a scan, this is the best way to pinpoint where deposits are and moniter them. If you visit http://www.ucl.ac.uk you can find out more info, my dad had a complete response with CDT for both Amyloid and MM however his MM had reared its head after just a year. Amyloid does make you very tired my dad was told to as much as he is able to do but not to push himself too much. Amyloid is such a rare condition but like MM things are progressing all the time please contact me any time if you need more info Clara xxx
Hi Sarah and Henry, welcome I see you have already had lots of great info I pop in and out of the discussion forum from time to time and find it is a great place for info and advice. My Dad was diagnosed with Myeloma at the start of the year worked through CTD until cycle 4 and then he was just too tired. He wasnt suitable for STC as he has amyloids in his kidneys so I cant comment too much on STC. I can however tell you that my Dad completed CTD in 7 cycles and his paraprotiens are within normal range, he is still off work as his job involves shifts day and nightshift. He is slowly getting his mojo back and after a difficult and stressful year we are all looking positively to the future, my Dad has every intention to return to work in the next few months. I know its difficult to keep a positive outlook when you are thrown into a world of jargon and things you never new existed however keeping positive will help you all through the journey, sending you love and positivity Clara xxx
Hi Mike, I'm on Facebook and Give Blood Scotland have a page that gives updates of where they will be visiting regularly, I'm sure its the same for the UK, perhaps we could ask them to feature this on one of there Facebook posts? It certainly has many members, I am one if them and was'nt aware that this option is available I'm sure there are others who don't either. Just a thought…..Clara
Hi Jet!
So glad to hear your great news, Clara x
Hi only me! Great to get an update on your mum, hope all goes well going forward. Dad is still on CTD on cycle 8 and still levels are dropping nicely. We have been told he is suitable for SCT and had no suggestion of velcade etc as an option, Dad feels really drained but it would be another few months before he gets his SCT should he want to go ahead with it, we just need to wait for his levels to plateau before they stop CTD. Best wishes and much love clarabell xxx
Hi Gill C,
Hope you get out of hospital soon, my dad was diagnosed in January and had Radiotherapy which has helped with pain, he has a mass of myeloma at the bottom of his spine and hip. He is on CTD and other than tiredness is doing ok. We're all rooting for you on here and here to help!
Gill re:constipation, make sure you take all the laxitives they give you and if they dont have the desired effect let the hospital know and they will give you something stronger like MOVELAT (i think thats what its called? My dad was taking senokot and after a couple of weeks had to have an enema, the hospital advised he should nt have left it that long before telling them.
Best wishes to both of you
Clara xxx
Hi Jet,
Loving your new profile pic it suits you! My Dad is being considered for SCT so I am finding it great picking up all the comments on your question. He has been told its not something to go into lightly as the blast of chemo is likely to make him quite ill for a week, however he is 62 so they are having a meeting to discuss. So far he isn't too sure he would have SCT even if they offer it I think this is due to the picture that has been painted to him giving him the worst case senareo! But I think the doctors have enlighten you on how bad it [u]could[/u] be so you have your eyes wide open. I will happily tell him about the various stories from all our friend on here and see what he thinks.
Wishing you all the best Jet, Clara xxx
