Hi Jean,
My goodness Beatrix is coming on in leaps and bounds now bless her. 13 lbs and counting. Hope you like the photo.
Best wishes to all.
Love
Pat xx
That's fantastic Helen, really encouraging. My FLC's are down to 24 and yesterday my consultant stopped velcade(afer I had it !)and I just have to continue with dex and cyclophosphamine for the next 2 weeks. I can't stop smiling!
Love
Pat xxx
My goodness Dai, what a story! The arm touching could have been a guardian angel type presence, but please don't press me for explanations. Not very well up on all that, but willing to take what is offered. I do, however feel my mum around when things are feeling particularly bad. Might just be wishful thinking on my part, but it seems to help anyway.
What I wanted to ask was – do you always have sitting/ standing bp taken before velcade? I am about to start cycle 8, once weekly with cyclophosphamide for the first 3 weeks and 20mg dex for 2 days each week, but I have never had the 2 bp readings taken, nor have I seen anyone around me waiting for velcade have them. Just the one sitting reading is taken at Leicester. Is this uncommon then?
I am pleased to hear that you have agreed to a wheelchair, it opens up so many more possibilities and chances for precious experiences together. Hope things start to get a bit better for you now.
Take care
Pat xx
Hi Christine,
So glad to hear Chris' news, long may it continue. Just a word of warning with the Alpha Lipoic Acid and Acetyl Carnitine regime. They are both antioxidants and should not be used if taking Velcade. Something I was warned about when mentioning green tea. Worth chacking up on it with Ellen maybe?
Pat
xxx
Hi Trish,
Yes I get this too. I have just finished cycle 7 VCD. The dex lessens the feelings of PN but when it wears off they come back with a vengence and my legs( and hands for that matter) are very shaky for a couple of days. The PN is sometimes so bad by bedtime I have to take Tramadol so that I can get to sleep. I also have a couple of days of breathlessness, apparently due to fluid retention. I have diruretics if I need them during this phase. I try not to take the extra drugs as I feel there is so much going into my body with the VCD it dosen't need any more. I have one more cycle to go and not sure what happens then. time to ask the questions in a couple of weeks when I see the consultant.I prefer my info a little at at a time! I have AL Amyloidosis and not mm but the disease and treatment are similar. I just hope it goes away after treatment. Hope Peter is doing and continues to do well on the Velcade and the consultant has good news for you.
Love, Pat
Hi Helen,
Glad to hear that things went well for you. I get a 'mark' on my stomach after the injections, one side more than the other for some reason, and so make sure I alternate sides so that it doesn't get too bad. The skin does get very dry there after a while so plenty of moisturiser is called for.
As for the Day Clinic – well I have the blood test done at my local Loughborough hospital the day before, ring Day Clinic on Tuesday morning to see if all is well, take Dex and then go in to Leicester Royal Infirmary about 14.00. Injection is normally done by 14.15 – 14.30 and I am away. Not too much time hanging around and not too much chat if you are not in the mood. It does appear to be organised chaos at times and I am dreading next week as Monday is a Bank Holiday. Phlebotamists are not working which means going in early to have bloods done and hanging around along with everyone else who will have the same problem. Oh well, can't have everything. But make that grumpy old woman number two. Mind you after watching Jenny Eclair last night that's not such a bad thing:-)
You may have noticed I am still on the dex sleep pattern but will be back to normal by tonight! Plenty of books to read for tomorrow just in case.
Hope things continue to go well for you.
Love and hugs
Pat xx
Hi Helen, I have been on VCD since Sept. initial dose of twice weekly had to be reduced to once a week x 4weks then a week off. I have found that after treatment on Tues, Weds and Thurs are not so bad and those are the days I plan to do things. Fri is a sit and read a book day and some Sats are the same. My main problems are weakness, shaking and fatigue and PN which seems to vary in strength and is particularly bad today. I do think a lot of the feeling bad is due to the Dex comedown which makes things feel worse after the initial boost. As for work I am not sure. I am 67, older than you and have found that I was not able to work and will officially retire at the end of July. Infections whilst on chemo also need to be considered and I know you are a nurse and therefore likely to come into contact with bugs more than some of us. But once again, it can be different for different people. Even reading on here there are so many different reactions to Dex let alone the V & C. I would just say that the side effects have intensified the further down the line we get, so maybe it is a decision you can postpone for a while. I hope this has helped in some way and that the treatment helps in a very big way.
Love Pat
Hi Nicki,
I am so very sorry for your loss. Your brother was far too young and I hope you get some answers as to why he died so suddenly. I have Amyloidosis but fortunately with no cardiac involvement. I wonder if the amyloid deposits on his heart had damaged it to such an extent that it caused a massive heart attack? The amyloids take a considerable amount of time to dissipate/be re-absorbed after the bone marrow source has been reduced/eliminated. I have been told that once the light chains are down (47 at present) it can take 18 months for the amyloid on my kidneys,liver and spleen to decrease in any sort of numbers. I can only say that if it was my brother I would be contacting the consultant for a more comprehensive reason for his passing. I do hope that you will eventually be able to come to terms with Adrian's death and get some very necessary answers to your questions.
With love
Pat
Oh sorry Eve. I could have sworn I read somewhere that you were Yorkshire. Nevertheless, I do like your straight talking and common sense. I have ended up in the midlands via Germany and Africa so I have a mixed up accent too. Can't help it when you travel around a bit can you? The dust is settling nicely >:-) and I see another company on Wednesday so should be sorted by the end of the week.
Have a nice weekend everyone.
Love to all
Pat xx
Thank you everyone for your encouraging messages.
Hi Mavis…I have AL Amyloidosis, similar to mm but without any bone problems and therefore no pain for which I am eternally grateful. It affects the organs, in my case kidneys, liver and spleen, but like mm is very individual and varies in each person. The treatment is down the same route as mm as most has evolved from research done in this field, but no SCT is offered. At the moment I have just finished cycle 6 of 8, velcade and dex weekly for 4 weeks, cyclophos for 3 weeks then a week off and on to the next cycle. What happens after that is, apparently, 6 weekly check ups to determine if the FLC are increasing and if so treatment begins again. As with mm there is no cure and the hope is that in remission the organs, particularly the kidneys start to regenerate. So the fight is the same, the outcome is the same with a time line of about 10 years at best and this site has been a godsend. I do feel very involved in all the journeys and follow them with growing respect and admiration. Love the idea of 50 things to do before I die. The first one on my list is to visit my daughter in Canada and see my new grandaughter, adopted in January this year as a preemie baby and now over 9lbs and doing so well.
Hi Eve….you have such good Yorkshire common sense and as a Lancashire lass that's quite an admission:-) It's nice to hear some straight talking and I applaud the measures you have taken to enjoy your lives together. I do hope Slim gets some relief very soon and the bmb is not too painful, not something I enjoyed at all!
Hi Jo…You are dead right about surogate granny. The things I get told at times!!!>:-) Glad to hear you are coping well with the velcade. I have 2 days where I retain fluid which makes me breathless and gives me a bit of ankle swelling. Have got pills for if it gets too bad but don't like taking them as they lower my already low blood pressure and give me other problems like passing out once! Good luck with your hair, mine is very short now, had it cut as the hair was so thin I couldn't make it look anything like. Still dyed it blonde though, couldn't stand the grey as well and have a funky wig for when I want to look 'normal'. Course Kev says I will never be normal……don't know what he means;-)
Hi Helen….hope you cope well with velcade and that you do not have many side effects, always different for everyone so good luck. It does seem to tackle the mm in quite a lot of cases, but so sorry to hear about your relapse. Your hair sounds nice and lovely to know that you can keep your new colour, it all helps.
Hi Tom…if I make any spelling mistakes it's because I can't find my glasses:-D Thank you.
Good grief, I have written a book and on a dex down day too! Thank you all, you are sooo supportive and I really can't thank you all enough.
Love to all
Pat
xx
Good news about the back(I think!), well a lot better than it could have been anyway. And really good news about the hair. We all need to keep our morale flying high in any way we can. I saw an older lady on the One Show last night in a section they did on a charity fund raise where they ladies all wore their wedding dresses. She has secondary cancer and had obviously lost her hair which had grown back, and bless her, she had had it dyed pink. It looked awesome! One for the back burner that.
Have a lovely weekend, weather looks good.
Love Pat
Hi Helen, I wish you all the very best on this next part of your journey. I really understand about hair …. and make-up come to think of it… and try to keep the external looking something like normal. I have had to give up with the hair as it has gone so thin (I am on VCD)that I have had it cut very short and wear a really funky wig when I go out and about. Anyway, back to what I wanted to say in the first place. Olia is a home colourant using oil instead of bleach so there must be something similar in the professional world. I'm sure your hairdresser will have more info. And really Helen, what else are daughters for, but to help you spend your money;-)I just wish mine was nearer and not in Canada.
Keep grounded and as well as you can.
Love
Pat xx
Love it Tom!!!
Hi Terry,
I have Amyloidosis which apparently cannot be cured but can be managed. How managed I will have to wait and see at the end of my 8 cycles of VCD. Unlike you I was past retirement age but fit and healthy and really enjoyed my job working with undergraduates at Loughborough University. Initially I was hoping to go back to work once chemo was finished as like Helen, I felt my work defined who I was etc. I have had second thoughts now and have found out about U3A, University of the Third Age, which sounds very grand but really isn't. Just people who want to keep active mentally by learning new skills and pursuing old and new hobbies. I have put in my retirement notice at work and will officially retire at the end of July.
In your case I feel that you have more than proved that you can support your family, blind or not, and I am sure that your family would be more than happy to give you the support to enable you to do something closer to your heart which may well turn into a profitable business. Stress is very debilitating and will not help with the MM so you need to take that into consideration as well. This is a very personal decision for both you and your family but my advice is, if financially it is viable, go with your heart.
Love and positive thoughts
Pat
Hi Jo,
I was wondering where you were.Glad to hear you are better now. I had a bout of pneumonia after the first lot of Velcade. Frightened me to death. Still get a bit chesty for a couple of days after treatment even now, but that's where it stays thank goodness. I am allergic to so many anti-b's it frightens me when I get an infection. I am halfway through cycle 6 now – 2 more to go so should be finished in July, then I can go to Canada and see my granddaughter. Hope things go well for you from now on.
Love and hugs
Pat
