Hi Steve,
My general health was good. This was discovered when I went to GP about left hip problem and saw the Orthopeadic consultant.
Full recovery was about 3 months
I manage day to day with some limitations.
Endrgy levels for me can be low with need to rest when body tells me to. I have learned not to be “macho” and accept the limitations. This is when family and friends can help.
I have not had all the injections as just as I got the letter my Myeloma came back with a vengeance.
I got 10 months remission from the first round of chemo and SCT.
Then I had a second round of chemo and got 2 weeks remission but did not know it !!!
I am now 3rd stage and 3rd round of chemo 4th week in.
Apart from tiredness and a few minor things you wouldn’t know there was anything wrong with me.
I do call on my son and son in law for help with heavy items but we carry on with life as before. The main curtailment is travel which we did a lot of prior to this and decent insurance can be prohibitive especially where we used go so will have to start looking to Europe which is easier to get back from.
As can be seen others get long remmision times and I decided to go for SCT in the hope that mine would be that as well. I have turned down a 2nd SCT as it was not thought it would help.
I am glad that I did my SCT as I would have thought “what if” if I hadn’t done it.
Others I hope will give you their experiences for you to make the right decision.
All the best
Graeme
Hi Steve, I my SCT last November in Southampton Hospital.
I don’t think you have to be “very strong” but you do have to be prepared for the possible unpleasant side effects of the treatment.
With out to much detail here it is a decision you will have to make after reading up on the treatment and whether it is for you.
I was in for 3 weeks. First few days ok then the chemo. Sickness and diarrhoea followed and feeling really bad then upward as time went on.
The nursing staff were brilliant and can give you “stuff” to help you especially with the sickness.
Yes it can be unpleasant but is doable. You haven’t said your age or whether you have backup with relatives etc. I had just retired and had my wife and relatives to see me through it. You will need to listen to your body as it may be very weak when you come home and rest when ever tired.
Some people I have read need to get back to work and possibly go back to early but these are decisions only you can make.
As I have said it is doable and not all those going through SCT suffer with all symptoms.
Hope this helps you
Regards
Graeme
Hi Shelagh,
Sorry to hear about your husband, makes it more difficult at a younger age.
I went through all stages and treatment before SCT. Sorry to say that I only got 10 months remission and now just finishing my 7th cycle of treatment again but will not be doing the SCT.
My main point is that with all medical procedures nothing is guaranteed. I have met men who have gone for years after SCT wheras I got a short period of time.
You don’t say what the genetics are and if you are ok to mention it there may be others of the same to guide you a bit better. Whatever happens there are plenty of lovely people on this forum to offer guidance and experience. Some you might not want to hear but believe me there is lots of helpful advice especially if he goes for SCT.
Hope that helps a bit, main thing is try to remain positive during this difficult time.
Regards, Graeme
Hi Julie,
Having been through what your husband is going through and SCT my main recommendation is listen to your body. Do not fight the tiredness and if possible go for a lie down or rest.
My Myeloma came at a time when I could retire (67) which allowed me to rest etc. I dont know how younger people who may have to work deal with it.
We men do struggle on thinking we can carry on as before but in many circumstances we now have to rearrange our lives and start to remember that it is possible that we cannot do everything we once did. I am lucky and have family around who can cover the little things that make my life that bit better when I am struggling.
There will be others on here who can give a different view especially if they know a bit more about you and husband. Say his age, does he need to work, any specific problems (mine was hip pain later fixed by a new one).
Hope this helps
Regards, Graeme
Hi Alex
Sorry to hear about your dad and the possible outcome that it may be Myeloma.
I was 67 and had been sent to orthopaedic for a “pain” in the hip last year. Based on his knowledge and CT scan I was sent to Haemotology for further tests and Multiple Myeloma was diagnosed. I too have lesions and tiny holes all over but touch wood none causing a problem yet.
What I am trying to say that this disease is normally discovered after other problems (in your dads case a Stroke). Others can be kidney problems, back, shoulder and so on before a final prognosis is given.
Your Consultant will do various blood test, possibly a PECTScan and then let you know of any treatment.
Depending on levels they may give a mild form of chemo or depending on the relevant information may just wait and monitor.
Others on this forum can talk to you about the “findings” where as I ask my consultant how are we doing and just need “its going in the right direction”.
The one thing I will say tell your dad to listen to his body. Tiredness is a big thing. If he needs it have a lie down and just rest, believe me it works and also drink plenty of water as this helps the kidneys and very important (2 – 3 litres per day is recommended).
Hope this initial contact helps and believe me there is plenty of information on this forum.
Regards
Graeme
Good day Lynn
Sorry to hear your news about your other half.
I to was diagnosed with MM at 67 with all relevant bone lesions. There are others on this forum who can help you with what all the relevant test results mean, I personally do not take much of that in but my consultant is excellent and he tells me if all results are going in the “right direction”.
Pills and injections are, sorry to say, a necesary part of treatment to help him carry on with a near normal life as possible. You haven’t said if he is in pain or restricted in anyway.
When I was in remission I travelled to Australia and there are others on this excellent forum who still travel and can offer advice on travel insurance etc.
Hope this helps and that you can both move forward albeit with possible limitations.
Regards
Graeme
Good day Angela
I had my SCT last November and have just received a letter informing me that I am now due my Vaccinations. But no live ones.
The SCT as explained to me kills of all past vaccinations. Before leaving SCT I had a course of something to prevent pneumonia and since then have been on Aciclover, Pennicilin & Co-Trimoxazle.
I did have my Flu jab before the letter as I was assured that it is a “dead” one.
My understanding is the Aciclover is to prevent Chicken Pox & Shingles (if your mum is on it).
Ref the SCT just prepare your mum for what could be a difficult time but for the majority it will be worth it. Jellies and juices saved me with very soft fruit.
Best of luck to you both. Apologises if this seems rushed but saw your request on line so thought a quick reply might help.
Regards
Graeme
Hi Graeme,
I completed my SCT last November and at present am in remission but still taking relevant drugs as the immune system improves.
SCT can be very painful and unpleasant but is very doable. Mine was 3 weeks exactly in Southampton Unit with approx 6 weeks after at home before feeling really well enough to do anything.
It is in my opinion worth it but be prepared and read up on it. See if anyone else from Peterborough has been there to get the benefits of the SCT unit.
There are other sections on here worth reading but if you would like some more info from my side the please let me know.
Regards
Graeme
Hi to you all that replied and thank you for your suggestions.
I have been to Australia and returned via Hong Kong.
My online insurance was very reasonable. When I can I will get onto my laptop and find the name of it. Frozen out with Windows 10 at moment.
For Australia it is worth remembering that there is a reciprocal arrangement similar to the European Health Card. Not well publisised but it is there on the Australian Web site. Won’t get you home but at least it will get you into hospital.
My only concern with all these Insurance companies is “how good are they when required “. Hopefully we will not need then.
Regards to all
Graeme
Hi Jill
Thank you for the feedback, sorry for the delay in replying.
I will try the charcoal tablets first and then if they do not work will start looking at my food intake.
Regards
Graeme
Hi Brian, sorry to hear about your delay. I too come under QA and had my SCT at Southampton.
You can only go with the delay and enjoy all you can prior to your SCT. My delay was due to having a dose of “man flu”. However once clear and office informed I was then told to wait for a call. I think they can only give you initially a period in time as there is no definite day for discharge per person as all deal with it differently. Mine was exactly 3 weeks from a phonecall on a Sunday morning to go in at teatime to final discharge. I actually passed the guy who was taking my room after it had been cleaned.
On a positive note all the staff were brilliant from cleaners through to doctors. Take anything they offer in pain or sickness relief as no point in suffering. Plenty of jellies or other soft item for when/if swallowing becomes difficult.
Best of luck
Graeme
Hi Ladybird
No question is silly when it comes to MM and how you can assist your partner.
Not sure from you your post how long you are looking for to stay in Sutton. Do you drive, how far away are you from Sutton. I was curious about your dilemma and looking around Sutton not many dog friendly hotels, were you thinking of leaving it in the hotel which might limit your choice.
Are there no reasonable “doggy hotels” in your area. Are you or partner computer savvy to investigate options. There was a list of hotels on the Royal Marsden site but no dogs allowed. Some I found needs a bit of travelling hence do you drive.
Sorry I couldn’t bring better news but by now you may have resolved it. If yes why not put it onto your post to possibly help others.
Regards
Graeme
Hi Andrea
Congratulations on completing your SCT. Mine was end of November 2014 and like you had sickness and in my case severe sore throat.
However the point is its doable and anyone reading these views and advice on how to get through it will, I hope, be heartened. The staff at all these hospitals seem wonderful and I can add Southampton to that.
My main advice after the SCT is take it easy and if the body says rest/sleep then do so. I am laid up with a stinking cold at present mainly due, I think, to doing some ,what I considered, basic shopping and helping out with my 94 year old mother. I could feel myself getting weary and tired but like any typical male carried on. If I had taken more rest or daily naps then I might not be laid up as I am.
Anyway I wish you and all of us that have gone through SCT a longer life.
Regards to all
Graeme
Hi Mervyn
Welcome to the forum even though we would rather not be here.
I am 68 and reasonably fit. I was working up to last year until my leg became to painful for stairs and ladders.
I have recently been through SCT at Southampton Hospital. Yes it is unpleasant but as all will tell you it is doable.
There are ways to alleviate or help you get through it. I thought I would go running out of the hospital but the only one running was the porter pushing the wheel chair!!!!
However you get stronger as the days go on and have to listen to your body. If it says go for a rest then do it. Don’t over stretch yourself at the start and believe me things do improve.
Just had my 100 day bone marrow test and will go for results next week. If all well Australia for me to see family.
I believe that SCT is the way to go hopefully giving me extended time.
Regards
Graeme
Many thanks for replies.
Regards.
Graeme
