Hi Ian
Kevin got cramps similar to yours whilst on CDT, especially in the last two cycles but it completely disappeared when he finished treatment. We were told it was a slight bit of pn but Kevin has had a few problems in the past with ‘trigger finger’ and from using a keyboard a lot so we thought initially this was coming back.
I really like the Myleoma Beacon for its depth of information, its polls and links to research so hopefully as another member suggested you will find the info you are looking for.
I hope it will disappear once your treatment finishes.
Nicki
Hi Julie
Thank you so much for your uplifting post – so good to hear that your experience of SCT was pretty positive overall and that you did not suffer any infections – did you take any particular precautions re infection control? I’m very obsessive anyway about cleanliness – I’ve just been totally disinfecting Kevin’s bathroom and bedroom for when he comes home and he is very good at washing hands before eating, after going to the bathroom etc so hope this will help. I have a best friend who is an infection control nurse and she tells me that just using hand gels is ineffective for a lot of gastro-intestinal bugs and that soap and water used properly is much better so I’ve been trying to drum this into Kevin!
It’s good to hear how good your levels are since Velcade, I wish you continuing good health.
Thanks again
Nicki
Hi Keith
Thank you so much for your reply and indeed I have been following your posts since your SCT too. it’s good to see that you are doing well and it was interesting to have details of your journey so far.
Actually Kevin’s progress so far seems to be similar to yours – now its Day 2 after having the stem cells transplanted and he is feeling pretty rough today – incredibly tired and a bit nauseous, but he is in good spirits and sleeping a lot, best thing no doubt. I’m telling him that probably this next 5 days will be tough but then slowly he should be getting a bit better every day, fingers crossed. At least so far his vital organs are fine – this was a huge worry for the consultant as he only has one kidney following previous unrelated kidney cancer, but touch wood, he is managing to keep up the 3L of fluid a day he is used to and the kideny is functioning perfectly.
At least we both work from home and have a downstairs bedroom and bathroom which will help when he comes home.
Just wondering Keith – did you get any infections /sepsis at all? Kevin’s consultant says he will definitely go into sepsis, we would love to prove him wrong and Julie’s reply to my post confirms that not everyone does go into sepsis!
I hope you are continuing to recover – your timeline is helpful thank you and thank you again for your good wishes.
Nicki
Hi Louise
Thank you so much for your post, there’s always a lot of comfort when you hear a positive story and I was pleased to hear about your father and how well he is now. I’m wondering if he had any bone or kidney damage at diagnosis and what his para protein levels were? Does he realise what a rare entity he is! Was he misdiagnosed with Waldenstroms at the outset as Kevin was as I believe about 50% of all those with Igm are.
Im pleased to hear that he is doing so well after his SCT, a Kevin has just finished his 5 cycles of CDT, his pp level is 5 and he now has a month of hopefully getting back to normal a bit before stem cell harvest at the beginning of May and then SCT hopefully on 2nd June so all the posts on here are very helpful.
Best wishes to your father got his continuing stability
nicki
Hi Megan
Thank you for your welcome and for sharing your husband’s experience of the PADIMAC trial. the info you have given is very helpful- currently, in cycle 3, my husband’s pp levels are down by 80% and it’s feasible I guest gather may be down by 90% plus. He really wants to how ahead either the SCT as soon as poss as his age may be against him to wait until relapse. Could mean hopefully though this he could have a month or two to regain fitness a bit before going in for the procedure without any ill effect.
I hope your husband recovered well from his treatment.
Regards
Nicki
Oh she is just so gorgeous! Those eyes and all that hair – you must ache to meet her! Re vaccinations – I gleaned quite a lot from the WM site and I believe you are ok unless you have to have live vaccines which cannot be done for a while, but as you say the consultant will tell you all. And then there is the big area of travel insurance to contend with – will all be so worth it though I am sure.
I hope you continue to recover over the weekend. We live right on (well a field away) on the North Northumberland coast and it has been a perfect springlike day today so I have been potting up lots of bulbs to bring into the house to cheer Kevin up with their yellow and purple colours, he’s been a little low this week with the increasing lethargy and wobbly legs that the treatment seems to be doing to him. we’re back to the consultant on Tuesday and i’m keeping fingers crossed that paraprotein is down to 5 or 6.
Let’s hope we all have some sunshine this weekend
Nicki
Thank you for your thoughts on SCTs and (finally!) for the photo of your grand-daughter- oh she looks so adorable and that hair! I can see why you want to go round the world to see her. We have 2 small grand-daughters the other end of the country who we don’t see very often and had hoped to have them at Christmas. However the consultant advised against it due to infection risks. That was very hard, children are such a joy aren’t they and are a real panacea when you’re down. We have 5 sons between us, none of them nearby regrettably nearby and a son and eldest grand-daughter in New Zealand. We’re hoping to start going abroad again next year and all going well to spend the winter in Dubail where medical support is excellent. Wondering what vaccinations you will need for Oz and how soon after the SCT you can have them?
I’m sure your plans will speed you now on the way to recovery.
best wishes
Nicki
Hi Carol
Thank you for your very warm welcome and it must be a welcome relief for you to be home! I have been reading your posts with a great deal of interest in the last days, to hear about your journey so far and how brilliantly you seem to be progressing! It must be a huge relief to be home but I suspect you will worry if you get the slightest temp rise or eat anything a bit unusual. You have several months to go until the summer so hopefully you will be fully fit to travel. I do think you have to have goals and plans for the future even if you have to be aware they can go wrong and we are hoping to be travelling again next winter. Remarkably Kevin has been told he is fit enough for SCT, his solo kidney works better than ever and he has always had the blood pressure of a 20 year old, better then mine-:( I suppose the big decision re SCT is when your initial treatment works very well you wonder whether SCT is the right route but as K is nearly 66 he knows that his days are numbered for the procedure so is adamant that is what he wants to do.
I am wondering which hospital you had the SCT at and how you feel your care was there?You must be so relieved that you are over the worst, I wish you well Carol. Regards,and thank you for your warm welcome, Nicki
Thank you John and June for your reply. You are right of course – if Kevin didn’t have a rare disease then there would be many others with it on the forum – indeed there are very few even on the bigger, international, Myeloma Beacon forum. IgM is just one of four types of ‘Igs’ – in myeloma the most frequent ones are IgA and IgG apparently. IgE is rare, IgM is very rare and IgD is v v rare! IgM is the the same paraprotein as found in WM hence the confusion. The fortunate thing though is that treatments seem to be the same for all types, the unfortunate thing is that the very few studies reported of IgM cases are the ones that say the prognosis is worse etc when really the very low numbers can’t predict prognosis with any accuracy.So we ignore them!
The one thing I am learning though is how individual this disease is and that variation has nothing to do with which ‘Ig’ you have – if it wasn’t so terrible I suppose it would be fascinating to hear others’ journeys and how they vary. I think we are fortunate though that across the world there is so much research being done more into novel, treatments that are more targeted to individual types and genetics.
Yes you definitely are morale boosters, thank you, there is so much comfort in forums such as this and I feel I know some already just from their posts and profiles, so thank you. Nicki
Hi Richard
Thank you for your welcome and for your reply. I think, like everything else in a partnership, you both have complimentary characteristics and I think my husband is absolutely right in thinking about the MM only when he really needs to. I certainly only mention it when he raises the subject of it even though I admit (as probably a typical worried female!)it is virtually always in my mind. However I’m very positive and I think knowledge and insight is empowering even in this disease.
It gave us great pleasure when the consultant told my husband that when he started taking dex he would have to start injecting insulin for his diabestes. Knowing what added stress this would be we thought ‘no way’ and Kevin embarked on a high protein, low carb diet on the dex days and we won!Not only that it seems to have helped to raise albumin levels a bit and helped him to lose a bit of weight. I also found low carb bread mixes (now that’s an experience)and low carb pasta but it’s great to have some sort of control.
I’ve already read a lot of the posts and it is a huge comfort to have the expertise and solidarity from others on this site and I enjoy your posts I have to say.I have to say though that the trauma of solid cancers, huge shock and worry as they were, pales into insignificance compared with blood cancers that are always going to rear their ugly heads again and again – that’s the toughie.Ironically we adjusted life after the first cancers and actually enjoyed life more, appreciated the good things in life more and were more content in our marriage I would say. This one’s going to be tougher but already we try to ensure we enjoy the days when K is feeling good,and give in a bit to being home and staying comfortable when he’s feeling rough. We’re lucky we both work at home a lot and live in the most isolated county in England – there’s always positives!
Hi
I’m new to joining the site – have been trying to post and create a profile for about 3 days and have finally managed it after finding a post from the web team, was quite a trek to see how to do it all.
I thought the face mask post was hilarious but seriously (as I can be testament to)ebay has face masks, disposable gloves and all sorts at very low prices. I’m a bit OCD about cleanliness and if there’s one thing about K’s myeloma that I sort of take to easily it’s the infection control bit. A best friend works in the NHS in infection control so I take her advice too – apparently actually physical washing of hands thoroughly gets rid of more bacteria (especially the GI ones) than handwashes, 80% of viruses are transmitted by hand contact, only 20% by inhalation. So I’ve got K into the habit of very frequent hand-washing when we’re out and after going to the bathroom, after handling food and we use First Defence nasal spray when in crowds or after being in contact with people. I’ve got antiseptic wipes and disinfect the bathrooms, door handles, literally everywhere and sterilise toothbrushes at least twice a week with bleach. K had two urinary tract infections 2011 and 2012 which turned to urosepsis within hours – at the time we didn’t know why but of course now realise it was the meyeloma and the immuno suppression. That’s when I started the infection control full on and (touch wood)with him religiously drinking 3l of fluid a day he hasn’t seen a recurrence. Very sad that I wasn’t with him on the long flight when he was sitting next to the guy with flu who he subsequently caught it from and then developed pneumonia – I would have asked to be moved and kept up the infection control big time. Will be interested to hear what others find effective regarding minimising the risk of infections.
