[Ang287Participant]

Hi Sarah, good luck with your fundraising and I hope your Dad goes into remission after his treatment. My husband who is 57 now was diagnosed May 2013 after fractures of his spine were seen on an MRI scan after 4 months of intense back pain. There was never any question on whether he would go for the trial or not and he asked for it and fortunately was randomised to do the trial. The 6 cycles of chemo went quickly and he had his stem cell transplant in February this year. A few weeks ago he was told the good news that he is in stringent remission. The trial drugs therefore worked very well for him in Manchester.
I did the BUPA Mancheser 10k run earlier this year to raise Monday for Myeloma UK and last Saturday we held a charity barbecue and raised £500. Graham’s cousin did a charity bike ride for Myeloma UK. I think all of the fundraising is so imporant and is a way to give something back and to help people in the future.
Good luck to your Dad and your family and best wishes for your fundraising.
Angela x

[Ang287Participant]

Hi Tony
Can you remember when you started the baby injections. My husband had his SCT in February 2014 and hasn’t had an injections yet. We go abroad in September and just wondered if he needs some before then. His GP have had no letter asking them to start them and I have chased up the hospital to ask them for a protocol of what he needs and when he needs them but just waiting to hear from them now.
Thanks
Angela

[Ang287Participant]

Hi Robbo
My husband was diagnosed at 55 with Stage 3 myeloma and fractures in his spine. His pain was terrible and initially he could easily collapse to the floor with the pain. He had to sleep for 6 months in a recliner chair as he could not lie flat. For 3 months he had to undergo very painful physiotherapy prior to his diagnosis but eventually an MRI scan got to the bottom of the problem with his back. He is also on Myeloma XI trial and had 6 months of chemo and SCT in February this year. In May he was told he is in stringent complete remission – which is the best we could hope for and he has only occasional pain in his back now. He took redundancy from work as they restructured his job but he is now doing things that he wants to do, along with occasional household jobs :), and his life is now a lot less stressfull than it was before the diagnosis I think as he used to work late at night and weekends as well sometimes with marking as he was a teacher. We are looking forward to our first holiday abroad for a long time in September and now life feels almost back to normal. He had his treatment at Manchester Royal Infirmary. He is now on no maintenance drugs at all and will just go for 3 monthly blood tests and still have monthly Zometa. Good luck for your treatment and hope you have many years of remission afterwards x

[Ang287Participant]

Brilliant article Sarah. You are both similar ages to us. My husband had his STC in February and now in complete remission. His job was restructured 9 days after his STC so he took redundancy. I wondered if he goes for a new job if he needs to divulge his medical condition. I have carried on working full time and I think this helps me and I run home from work a few times a week. We are looking forward to our first holiday abroad in 2 years soon. The words “stringent complete remission” were amazing. Let’s hope our husbands both have a very long remission. x

[Ang287Participant]

We did the run in awful hot weather. We have so far raised nearly £300. If anyone wants to sponsor us after the event I think the just giving page will be open for a few more weeks. Graham was told yesterday that he is in full remission so hoping this lasts a long time.

Richard – sorry to see your STC was not as successful but hope you are doing ok. We have enough from Graham’s redundancy for the next year so all the jobs around the house that he hasn’t had time for hopefully will start getting done now when he is feeling up to it and it’s nice to come home from work to my tea made.
Angela

[Ang287Participant]

Hi Richard
The only results we were originally interested in were the neutrophils coming above 1 so that he could go out again. When we were last at the clinic we asked about paraproteins etc but were told that the tests were inconclusive yet so have not officially been told that his bloods are clear of the paraproteins. We won’t get result of BMB until 23rd May.
He has now officially taken voluntary redundancy with about a half year’s pay so he doesn’t have the pressure now of going back to such a stressful job.
How are you doing?
Angela

[Ang287Participant]

Thanks Megan – I will need the good luck and I am very optimistic that the bone marrow news will be good.

[Ang287Participant]

Hi Scott, How have you gone on since last week? Graham went back yesterday and like you his neutrophils have dropped to 0.8 He had an injection like you did yesterday and has to return next Wednesday afternoon. He is also a bit anaemic so this is what is causing his dizziness now and again. It is now 5 weeks since transplant and he is still very tired and a bit breathless. His anti-sickness tablets were not helping much so he got some different ones yesterday. Hope you both get your neutrophil levels up soon. Graham has now lost 2 stone since he had the transplant 5 weeks ago but had always wanted to get his weight down.
Best wishes, Angela

[Ang287Participant]

Hi Jane
It’s so good to read a story like yours. I read it out to my husband Graham who had his 1st STC a month ago aged 56. After I read your story he said what are you smiling about. He won’t go on the forum but I read out all the positive things I see on it to him. Like you our daughter is getting married this year so he needs to get himself fit now to walk her down the aisle in September. He also hopes to play his guitar and sing for her first dance and I am really looking forward to that.
Enjoy your son’s wedding and hen do and good luck with your treatments in the future.
Angela

[Ang287Participant]

Hi Scott, Hope you are continuing to improve since your last post. Graham has now been home for 2 weeks but very slow improvement. He is so breathless whenever he tries to do anything and has started feeling nauseous recently although manages to eat well (about half the portions he used to have). He didn’t want to go to MRI yesterday morning as felt so ill but they said he should go so we went quite late. He had bloodes done at 12.30 and then didn’t see the doctor until 2.30 and felt quite ill sat in the waiting room for 2 hours. I had to rush back to work after the appointment so didn’t even have time to pick up his anti-sickness prescription so had to go back there this morning.
Graham still hasn’t got out of bed yet today saying he is very tired but he says he feels his breathing is improving.
Like you Graham’s employer has been very supportive but Human Resources rang on Monday to say a letter was coming. 40 jobs at his college are being restructed and his is one of them. He can apply for redundancy by the end of this month or go through the process of applying for one of the newly created jobs. He can hardly get out of bed so is in no way in a position to make such an important decision so soon after his stem cell transplant. The whole process will be over by end of April and his sick note doesn’t run out until then so this is an added worry for him. His health is obviously the main thing to think about at the moment. We are back at MRI next Friday morning. His bloods were apparently good yesterday but didn’t have all of the results.
Hope you are getting better by the day.
Angela

[Ang287Participant]

Hi Richard and Carol
it was a month last Thursday since the stem cells went back and according to doctor yesterday at check-up everything going ok but Graham was very nauseous yesterday and I tried to cancel appointment but they said it best to go so we did. He is still very tired and breathless. He is on anti-virals but there is one he can now stop taking and earlier in the week stopped taking the fizzy salty drink that he had to make up and which he dreaded. This link was started by Richard in November and it is now March! Where did February go??
Graham got a call from HR at the College he works at on Monday (9 days after coming home from hospital!). 40 jobs are going and his is one of them so he can apply for redundancy or go through the selection for a new job and all has to be in place by end of April so this is an added stress and one which he shouldn’t even have to think about.
Best wishes, Angela x

[Ang287Participant]

Hi Carol, great news about your bloods – the time has flown and glad to hear your happy news. It’s now a month since Graham’s STC and he has now been home 2 weeks today. It’s not getting much easier but I know it takes time. Let’s hope we get the same news as you in another month. I think he is finally fighting off the flu bug he came home with.
Angela xx

[Ang287Participant]

Hi Scott
How has treatment gone for you? Graham came home on Saturday afternoon and was in an isolation room for the whole time (apart from in an isolation room on intensive care for one day when he had a high temperature and atrial fibrilation). His treatment went well but because he had mild flu he was kept in an isolation room from admission to discharge so he never actually met any of the other patients on the unit. He only had vomitting for one day and has a good appetite and still enjoys food and can taste things normally. He is very tired and sleeping a lot. His hair didn’t fall out until about 4 days ago. The staff on the unit are absolutely brilliant and I am sure he could not have got better treatment if he was a private patient – apart from putting wet towels on him to get down his temperature. As I think you are only a week behind him you will be home soon too. Lets hope you both have a long remission.
Best wishes, Angela

[Ang287Participant]

Hi Dick and Carol
Hope you were ok following your last post. I have good news today. I have picked up Graham this afternoon and he is back home. It is 16 days after his stem cells put back. The first week was ok but he had a very weak flu and I think this made things worse than they would have been. Last Sunday he was admitted to intensive care for 10 hours due to a temperature of 40, low blood pressure and a pulse which was changing from 95 to 180. He was then on a cocktail of antibiotics for a few days and oxygen for about 4 days. He had an isolation room for the whole of his stay due to him having flu and all of the staff were wonderful. He has the diarrhoea but only had sickness for one day and he has had a good appetite throughout his stay although not eating as much as he would at home. Also he didn’t get the sore mouth. His taste buds have not changed at all which is good. He goes back for an out-patient appointment on Wednesday.
He is so pleased to be home and so am I as the last 2 weeks have been really hard with working/visiting plus the scare of him going into intensive care at 6.00 am on a Sunday morning. Hope you are both doing well.
Angela

[Ang287Participant]

Hi Jo
My husband had fractures in his spine and it took from January to May last year to diagnose. He had six months of chemo on the Myeloma XI trial and is currently in hospital for his stem cell transplant. He had his Melphalan a week last Wednesday and the stem cells returned the following day. It is now 8 days since the stem cells returned and up until yesterday he was managing fine but now having a couple of bad days but I am hoping that from tomorrow onwards he will start getting better and maybe be home for next weekend. My husband said he really had no choice in the matter if this gave him a better chance of a longer remission so he was happy to go ahead with it even though he has always had a phobia of hospitals. All of the staff involved at two hospitals he goes to have been brilliant and everything is explained so well in stages. The time has flown since diagnosis and we are hoping for a much better year this year once he starts to improve and a very long remission. Even now my husband said nothing could compare with the immense pain he was suffering for months early last year before his diagnosis and trying to do the physio exercises he was told to do. Good luck with your treatment.
Angela

• This reply was modified 10 years, 9 months ago by  Ang287.

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