This topic contains 67 replies, has 8 voices, and was last updated by 
Helen 8 years, 3 months ago.
Hi Tony
Sounds so similar to our household. Our no 2 son was on crutches last Christmas following an ankle op after messing around during a first team league cricket match with a football and got himself kicked on the ankle without any protection.
Sorry to hear about your stay in hospital, but it’s the best place to be if there is a suspected infection. How has your treatment been going? Do you feel exhausted or have you still got some energy? When are you due your second sct? My fourth cycle of treatment has really reduced my energy levels and all was explained at clinic today with a very low set of blood results, with neuts 0.66, white blood cells 0.99 together with platelets at around 60. However, the good news is that I’ve been given two weeks off chemo to recover which is very welcome over Xmas. The bad news is that I need to go through another two cycles to try to reduce the light chains down as much as possible.
Our partners certainly have to deal with so much whilst we are ill and we rely on them so much to help us through the good and tough times.
Jan
Hi Jan
Wishing you a Happy and healthy New year. Ian’s cough disappeared just before Christmas so we had a lovely time and ate too much at my son’s for Christmas dinner. The grandchildren were delighted with their presents and Isla has been out most days on her roller skates. I now have to lose some weight but can’t resist the chocolates we still have from Christmas.
Has your son got a date for his tonsils op and has your hubby’s arm repaired itself, but most of all how are you? I hope your FLC have come down and you get a SCT quickly. Ian’s next appointment at the hospital is on Tuesday 12th January so fingers crossed all is well. I always worry when we go for results.
Maureen x
Hi Maureen
A Happy New Year to both you and Ian. I’m glad Ian’s cough disappeared before Christmas and that you had a good time over the festive season with your son and grandchildren. Like you, I also increased my weight due to all of the chocolates, biscuits and extra food I was eating whilst being off chemo. My son’s were great over Christmas because they cooked lunch, carved the turkey and helped with the clearing up afterwards. It’s impressive to see the skills they have developed since leaving home for uni and then work.
My younger son’s tonsil operation is being scheduled for the end of March so that he can have a chance of recovery during the two weeks off from teaching job over the Easter hols. Hubby keeps forgetting his sore shoulder and keeps raising his arm above his shoulder which causes him considerable pain and further tissue damage. Unfortunately physio is fully booked until February.
I felt much better after being given two weeks off chemo over Christmas and apparently my bloods have recovered well. The light chains have significantly fallen from 1900 in October to 157 at the end of December which meets the 90% reduction target to be considered for a second SCT. However my consultant wants to see whether the light chains can be reduced even further, therefore I restart chemo next week. Due to the increased nerve damage in my one leg, which is so painful at times, the velcade will be at a reduced rate of only one injection per week together with dex for four weeks, then a week off to recover. I’ve been taken off the cylophosamide due to the side effects which I’m experiencing with this drug. If my light chains continue to reduce, then chemo will continue for at least a further two cycles, but if the light chains increase or start to plateau then preparation for the possible second SCT will begin.
I hope Ian’s next appointment goes well next week. It’s always worrying when you wait to hear your results. I always phone up the myeloma nurse before my next consultant’s appointment for my light chain results, which at least prepares me for what might be discussed at my next visit.
Jan x
Hi Jan
Ian’s FLC rose to 22 but his Kappa FLC rose to 24. Ian has always had Lamda light chains and the consultant was confused as his kidneys are fine. He wasn’t worried as the ratio was still within normal range and we return in 2 months. i am not worrying about it at the moment but will do if FLC continue to rise.
Planning a lunch at the moment for Ian’s 60th on 21st March for family and friends and a city break in Vienna. We haven’t been to Austria before so looking forward to seeing the grand architecture. We are not an opera fan but depending on what’s on we will give it a go. We have also booked a holiday in Bermuda in June so really looking forward to that. We have been before and it is beautiful. Pink sands and blue sea but there is a lot to see and the transport is very good.
It is snowing and freezing here at the moment but very pretty, better than all that rain we have been having. Did you get lots of rain and were you flooded?
I do hope that your light chains continue to decrease and it won’t be too long until your SCT. Ian’s FLC were 500 when the consultant decided to give him a SCT but I’m sure they came down with the cyclophosamide they gave him before harvesting.
I am now trying to lose weight and eating smaller portions, Ian has put a lot of weight on so I am nagging him to lose some too. It is easier when the weather is warmer and we get out into the garden.
Hopefully your hubby’s arm is much better and you get a date soon for your SCT.
Maureen x
Hi Folks
Strikes me we could do with starting some new posts as this one just goes on and on!
Just wanted to tell Helen and Andy I was thinking of them!
And best wishes to all using this post!
Mavis X
Hi Jan
I’m not too good at responding these days! Out of signal predominantly.
Glad to hear the velcade is working- I had to have the reduced dose as it affected my legs quite badly but it did give me a few tolerable months.
When do you anticipate having the next transplant? And I think I’d better do as Mavis asks and start a new post, this one is too long now.
Hi Maureen
It’s so good to see that you and Ian are getting out and about, we had a lovely trip to Austria in November it’s a lovely place, didn’t get as far as Vienna. I’ve not got any holidays planned at the minute… Too much to do in holiday house at the minute, not that I’m doing any of it.
Hi Mavis
I’m glad to see you are still ok, and yes you are right, this post is in too many pages now so I’m going to start another one next time I post.
Andy, how are you doing at present?
Love Helen
Hi Helen
Good to hear from you. I’m not sure about the transplant yet because my light chains increased from 150 to 350 after just two weeks rest from the drugs over Christmas. I’m now on a five week cycle of a Velcade injection once a week, with one week off with a possible four cycles to complete. Cyclophosamide has been taken out of the treatment because it was thought to be reducing my blood levels too much. The once a week injection is much easier on my body and has shown to raise my blood test results to the highest levels I have achieved since having myeloma in 2010. However whether my light chains are back under control will be shown over the next two weeks.
How long did you have to wait from the end of your treatment until you had your act? with my first sct I only waited four weeks, however this hospital appears to have eight to ten weeks gap inbetween end of treatment and sct in order to allow your body to recover a bit more following the side effects from the drugs.
Regards Jan x
Hi Maureen
Good to hear Ian’s latest results are good and you can look forward to your holidays in March and June. My consultant wants to reduce my light chains to below 100, but since they increased from 150 to 350 then I still have a long way to go and I’ve yet to find out if Velcade is still working. Coming off the cyclophosamide and spreading the injections to once a week with rising light chains might not be the best way forward. My next light chain test results will be in two weeks time. How long did Ian wait from the end of his treatment to sct?
My son is booked in for his tonsillitis op for Easter Friday and hubby is now undergoing private physio on his shoulder every week. The physiotherapist thinks the pain in his shoulder is down to poor posture either from too much computer work or from driving, which is a totally different message from the one he received from his hospital x Ray’s. Not sure who is right? We will have to wait and see if the physio improves his pain and arm movement.
Fortunately we are not affected by the heavy rainfalls, apart from some local flooding of roads and subsequent damage to the tarmac road surface causing some very deep pot holes. Last week driving back from the hospital in the dark, my mini hit a bad pot hole causing £350 worth of damage to the alloy wheel, together with a further £150 for a new wheel! An expensive outing.
regards Jan x
Hi Jan
I waited for 4 weeks after finishing chemo for stem cell collection then 4 weeks after that for transplant, but I’ve only had the one transplant and I think it’s unlikely that I’ll have another as my cytogenetic problem is one where auto transplant is least effective, but who knows what might happen if I run out of other options.
You look like having a busy few months ahead of you with everyone else as well as your treatment!
I’m going to start a new thread now, this one is too long.
Love Helen
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