Hi Dick
I think you are right about Christmas. Following our visit today we have been told that we don't see the transplant coordinator until after 10th December (when his stem cells are due to be removed) and then plans will be made for him to go in but there are other medical procedures prior to the transplant to assess his fitness so we have been told it is unlikely to be done before January so he may go in at the same time as you. Now I know he is 99% likely to be home for Christmas I will put a tree up and we will have a good Christmas and I will now make Christmas dinner for our family. Until now I did not want to discuss where I was having Christmas dinner as in the grand scheme of things it didn't seem important.
Graham has a big boost of chemo next Monday and starts the injections on Tuesday and will probably be bald 2 weeks later.
It will be nice for you to be home at Christmas, especially with a young daughter who will want her Dad there on Christmas Day.
Best wishes
Angela
Hi Dick
Glad to see things are moving despite them not having the results today. You are now ahead of Graham as he is due to start the injections next Tuesday after chemo at the hospital on the Monday. we are due at our hospital tomorrow to sign all the paperwork and have final questions answered. I am stil hoping for a date in December for him for the stem cell transplant as Graham is now getting a bit worried about the whole thing and as long as he is fit enough and there is bed then let's get it over with as quickly as we can.
Best wishes
Angela
Hi Jasper
Sorry to hear about your Mum and the strong possibility that she has now developed MM. After seeing our GP with results of blood tests we were very worried about the diagnosis but once we saw the haematologist we were happier as he said these days it is manageable and not like years ago – don't read anything on the internet and try and just keep to this site as you can read really out of date things.
At our first visit with our haematologist who specialises in myeloma treatment arrangements were made for a bone marrow biopsy and he had a full skeletal survey on that day also to see which bones were affected so that all results were available at our next appointment with his haematologist and at that point my husband commenced his 6 months of chemo and came home with two big bags of tablets that we then spread all over our dining table in disbelief! My husband Graham wanted to take the trial drugs and was randomised (which means his info is fed into a computer and then a decision is made). He got the trial drugs and he finished his 6 months of chemo 2 weeks ago. We now have an appointment tomorrow to start the procedure for the stem cell transplant. He is having his stem cells removed on 10th December, all being well, and we are hoping he will have the stem cell treatment soon after that.
My husband was ill with horrendous pains in his back for nearly 5 months before an MRI scan was arranged, and that was the start of getting to the diagnosis and it was a complete shock.
I would also like to support MANCHESTER as a fantastic place to receive treatment for multiple myeloma and I think we are very lucky from that point of view. It's not just good football teams that we have! If my husband had been a private patient I don't think he could have received better treatment so far and I just hope this continues.
Your Mum must be very proud of your support and help.
Angela
Hi Jean
My question was really whether Graham should be having the flu jab now so that he is protected in the next few weeks in the run up to STC. His GP has never mentioned it and I brought it up when he last went to our local hospital and he said the hospital doing transplant will probably arrange it but it is getting close now to his STC as hopefully it may be done around Christmas time.
I bet he will have it soon and then like you say will have to have it again which makes sense as all your immunity is lost that you have built up over the years.
Best wishes
Angela x
Hi Scott
Glad the dates now make a bit more sense. I too think 4-6 weeks sounds a long time and I think once stem cells are collected if you are fit enough they will get you in as soon as they have a bed – in reality it could even be possible the same week. Like you say Christmas can come and go this year and there will be a lot more to enjoy in the future when feeling better.
I will let you know if they tell us next week when he is likely to have SCT.
Best wishes
Angela
Hi Scott
It looks like you are not far behind Graham. He goes next week for consent form to be signed and final questions answered. He then goes for chemo for the day on 2nd December and then takes home a week's worth of injections which will boost stem cells. He is then back on 9th December to see if enough stem cells and if so he will go back the following day to have them collected. He may also need to go back the day after that if not enough collected. They are then frozen ready for when he is admitted for the transplant. The transplant date is the only date we haven't got. I think it is usually 4-6 weeks after collection of stem cells but the nurse we spoke to said that really it can be any time after the collection. Maybe it then depends on when beds are available and your fitness to undergo it. Maybe Graham's date will be after Christmas but we will just go with whatever date they offer and will not be disappointed if it is before Christmas. Graham intended going out tonight but has had his tea and is now snoring. I am just glad he is resting. It's a really cold night so I am glad he is at home.
Best wishes
Angela
Hi Scott
My husband Graham has just finished 6 months of Myeloma XI trial drugs VCD and has done really well with very little side effects apart from irritability. He was last week transferred to Manchester Royal Infirmary for the next stage of treatment (SCT) and he is due there next week 27th November. At his last appointment at our local hospital I asked about the flu jab and his haematologist said he should have this so we will mention it when we go to MRI next week.
He has now been off treatment for a week and now is just complaining of his back pain and he is sleeping quite a lot but still managing to work 5 half days a week and do the rest of his work (lesson planning and marking) at home. Due to Graham's back pain he slept in a reclining chair from January to August but after a few days in Edinburgh in August he got used to lying flat again and then started to sleep in bed again.
I read your post from when you were diagnosed and I see that you also had the horrendous spasms. I witnessed Graham having them and I could see how painful they were. He also on occasions had problems breathing but this didn't seem to worry his physio at all!
I see you are also under Dr Gibbs. Graham is having his stem cells harvested on 10th December and we are hoping that he gets in to have his SCT Christmas week. By then he would have finished teaching for Christmas and we will put Christmas on hold this year. I just want him to have the SCT ASAP so that he has less chance to catch infections/colds etc but we will have to see what they say at Manchester Royal Infirmary.
Good luck with your treatment and lets hope you will both be in remission early next year. Do you have any idea yet when you will be having yours?
Best wishes
Angela
Hi Dick
Glad your second BMB was easier just like Graham's was. We were told that the first time round it's like putting a needle in soap when your bones are softer so after 6 months they get a bit harder and it is easier for them.
Graham has been ill for the last 2 days, he has been feeling shivery and nauseous and very tired – he also had an hour feeling like this on Friday last week. He is having a blood test in the morning just to check he hasn't got an infection although his bloods from last Tuesday are fine.
Good luck with the stem cell harvest – hope you get a date soon for this and the transplant.
Angela
Hi Dick
Sorry to hear that the protein levels haven't come down enough. Good luck with the BMB tomorrow. I went to the the biopsy with Graham last week and it was better than he thought and was over so quickly. Graham's medication has now stopped until he has a chemo session at the Manchester Royal Infirmary on 2n December and it's such a nice feeling knowing he has got a break for a little while. Hopefully your and Graham' biopsies will show some good improvement and you can still have SCT before Christmas. Graham used to get a lot of cramps, sometimes in his feet and he drank tonic daily for that and it helped.
Good luck for tomorrow and Wednesday.
Angela
Hi Babs
It was nice to read this and to hear that you are now in remission and getting to some nice places. That's the way to do it. I can't wait until we can plan something but I am sure it won't be long off. Can you recommend anyone for traven insurance although I realize it probably won't be until next Summer that we go away.
My husband also had lots of niggly pains over the years but has had gout for years and every time he got a really bad hip or back pain he said it was his gout playing up and I now wonder if this was the case but we will never know. The back pain that he started with in January though was totally worse and I have never seen anyone in such pain and looking so white at times. In March I took time off to attend physio with him but he said I could not go in with him as I would show him up. I said ok (and sat in the waiting room)but you had better come out with a referral for an X-ray and he did – he came out with an MRI referral so we were finally getting somewhere. It's just a shame it took so long.
Graham was on top of the world yesterday as he had got his second bone marrow biopsy out of the way, his 6 months chemo has finished and he is now onto the next stage of treatment.
Take care, Angela x
Hi Jo, So sorry to hear that you have had a year similar to mine but on a happier note you sound as though you are married to a wonderful man. It's honesly not that bad and we have had lots of laughs throughout the last six months. Fortunately for Graham he hasn't really had any bad side effects from the tablets and went 6 months without any infections – just a bad tummy bug last week so we are now over the first hurdle. He shook hands with his Haematologist on Monday as won't now see him again until about 3 months after his SCT (which will be done at MRI). He had his biopsy (2nd) yesterday and even that was not as bad as he remembered so he was on top of the world last night that he had got that over with.
I have read your blog and it is very well written and is both funny and sad like you say and I wish I had done something similar. I will send you a private message when I have more time tonight and I am happy to be one of your cancer friends. Keep positive as that is what they need and it sounds like you have lots of support.
Best wishes, Angela xx
Thanks everyone for all your posts. Graham has almost recovered now from his stomach bug and feeling a lot better. He went for his monthly Zometa today and blood test and paraprotein levels that we got today from October were still the same as September (at 2) but good enough for SCT so that's good. Tomorrow he has his bone marrow biopsy. When he goes to MRI on 27th November they will then have the result of the biopsy. Graham will be glad when tomorrow is over and then no appointments until 27th November. It will seem really strange on Saturday as he no longer has to start his next month of chemo. It's also good at the moment as his birthday is on 23rd Nov so intending to have a good night out and a few drinks that night. I worked it out months ago that his chemo would hopefully be over by his birthday so that was something for him to look forward to. DickB – don't forget to update us when you get a date for SCT and we will do the same. I asked Graham today if he would consider doing some light exercise routines as I have a few old exercise videos that we could both exercise to but the answer was no! It's a shame that the weather is wet and cold at the moment as I don't think he will do as many walks round the block as he has been doing and we both know this was helping him. His back is getting less painful as the months go by but he does not walk as upright as he did and he has lost a couple of inches in height.
Best wishes to DickB, Tom, Rosie, Vicki and Colin and also Lolly and everyone else going through all the stages of this treatment.
Angela and Graham x 🙂
Hi DickB, not sure if I have already responded to your post but tried to respond to Rosie separately to you. Thanks for for your posting. I will post on here how Graham's plans go – I think we will find out on 27th at MRI when the date for SCT will be but I realize a lot of planning goes into this and your fitness for it has to be established first with various tests for heart and lungs etc. Let's hope you are both in remission in early January and are then in a long remission just in time for the cure which I think is just around the corner! Once in remission and feeling fitter I am going to encourage Graham to start doing regular exercise which is something he has not really done for the last 20 years or so. We have already been told that walking is really good for his back muscles to support his spine so it can only be good. Best wishes to you and your family and hope all goes smoothly for you at the next stage of your treatment. Angela x
Hi Rosie, nice to hear from you. I hope your husband is doing well and like you say if we have any questions it will be easy to get an answer from somebody who has already gone through this. I think Graham's stomach bug is going now as he ate ok yesterday but his taste buds are not the same and he is no longer enjoying bacon and eggs. In the last 6 months though he has been mad for chocolate and sweets and last night was craving a chocolate pudding at 10.30 pm. My problem is that if I get sweet stuff in for him I end up eating it.
Christmas will come and go this year and if Graham is in for his SCT over this period then I will have more days off work to visit him. I have saved most of my annual leave for when he is in hospital but the myeloma nurse said it might be best to save these days until he is home so I will see how things go and maybe do half days at work so I can have long visits at hospital and also have time for when he comes home. There is a lot to plan and I will be glad to post on here that he has had his stem cell transplant and he is recovering well. Best wishes, Angela x