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tom 13 years, 4 months ago.
wow what a whirlwind few weeks! I'm a 26 yr old from N.ireland and my dad was diagnosed with Myeloma 5 weeks ago. Hes only 48 so this is a massive shock to all of us and him. after 4 weeks in hospital he is now home but pretty much bed ridden, his mobility is so low its a real struggle doing the simplest of things the pain is really bad. Hes currently using a syringe driver for the pain with a lovely concoction of meds. Hes getting Velcade for his treatment and he just finished cycle 2, no indication yet of anything working and its more pain management at the minute. The steroids are crazy, the mood swings really take their tole on him and us. Hes also developed a horrible rash all over from one of the oral meds to stop shingles but the doctors have changed that med now so hopefully it goes away.
there is so much information to deal with and i guess its a waiting game now?
Christin x
Hello Christin
So sorry to hear about your dad hopefully the hospital will get on top of his pain as you will see from posts on here there are lots of things to help
also the Velcade some people respond quicker than others but if that doesn't work there are are couple more options for him.I had a rash with my initial treatment it turn out to be the antibiotic they gave me CIPROFLOXCIN as soon as I stopped that the rash went
Good luck give my regards to your dad
Love Jo
Hi Christin
I am so sorry that you have had to join this site, sounds like you have been thrown in at the deepend with all this…….if it is any consolation, my Mum was diagnosed with MM in july 09 at 64, she was in hospital for around 6 months, she went from being a healthy person that was always on the go, to this extremely poorly lady. She was totally bed ridden and at one point could do nothing for herself, having to be hoisted out of bed etc, she is still in a wheelchair but can manage to walk around the house, she is a very determined person, and for that i am truly thankful. What I am trying to say is that things do look really bad right now, however, things do get better with the right treatments. It is really hard when you first get the diagnosis, I really struggled to come to terms with it all, but on here you will find friends that will help you through tough times,and celebrate the happy times,you do not need to go through this feeling alone. If i can help at all please do not hesitate to contact me, my email is michelleakitt29@hotmail.com. keep your chin up with much love and hugs michelle x x
helloo! thanks so much both of you ^__^
badger – dads rash was cause by an antibiotic too but its starting to go down now which is good.
michelle – thats just like my dad, he was so fit did extreme sports we were surfin buddies and now he cant do anything.
hes found the information here very reassuring knowing that there are other people dealing with the same issues/symptoms etc. obviously the getting your head round it is still hard and he keeps dwelling on how this will leave him long term, will he always have pain? will he be able to walk unaided etc? we got a great hospital bed installed in the house yesterday and that has really helped him stay comfortable and stops him getting frustrated with the pain so we are on a slight up today!
Hello everyone,
I'm Christin's mum.
To say the least this has been some roller coaster ride so far. The side effects of the steroids are not very pleasant but we can manage..just need to stay calm! Its the pain that David is in is very concerning and hard to watch someone you love being so uncomfortable! We are having an appointment on Tuesday with the pain doctor, so hopefully she can tweak and adapt the pain relief to make him more mobile.
Christin has been a God send in helping caring for her daddy! I am so proud of her.
Meike
Hi Meike so sorry you have found yourself dealing with myeloma but you will find this site a great help for answers but also support for you and Christin as well . I can remember very clearly what a rollercoaster it was when I was first diagnosed but it does get easier as you get used to all the treatmentand life does become more normal. Its good that your husband is seeing someone about his pain , bone pain is very common in myeloma but there are lots of solutions just tell him not to suffer in silence let the doctors know so they can adjust doses or change painkillers Recently I had some radiotherapy to help wit particularly bad back pain and it worked brilliantly !! When I was diagnosed they found that two and a half vertebrae had been destroyed , I had been in agony for months, I had a major reconstruction of my spine using metal rods and plates . Like your husband I worried about how mobile I would be and how much pain wouldthere be but although I cant climb mountains or run marathons I am able to walk unaided and do things for myself As for the pain that is kept under control with painkillers and as I mentioned before radiotherapy Your husbands age will be a big plus in getting his mobility back and he sounds as if he is generally fit too . Good luck with Velcade , its worked well for lots of people and dont forget we are here if you need us . Christin sounds like a daughter any mum and dad would be very proud of best wishes Bridget
Hello Meika and Christin
Just to say a welcome to you,
May i suggest you look at the post[ a ray of hope ]then go back over the old post,you can do this by clicking on photo.
It might give you some hope and encouragement.
best wishers eve
Hi Meika and Christin. Im so sorry that your dad has this awful disease. My mum was diagnosed with mm in 2009, she is 71 yr old and a fighter.
Its really upsetting like you said to see your loved one go from a very healthy outgoing person(my mum was the same). to someone who is in constant pain and cannot do what they used to do. My mum is starting velcade in the next few weeks she has an appointment with her consultant on the 29th june so we will know more then.
The way we deal with things is plenty of time together, chats,laughs and lots of positivity. I think this is what gets us through this terrible time.
I hope your dad is ok and if you need to chat you know where we are.
This site is brilliant and the people on here have been a great support to me.
Take care and keep in touch
Gina x
I am so sorry that you have had this awful news. I hope this helps. I was diagnosed in 2005 at the age of 50 – then considered quite young for this awful disease. I had my first transplant in February of this year after a year of quite difficult times. Anyway, despite fearing the very worst, and having a fairly worrying and slow recovery time I have just been told I am in remission. Things are moving forward all the time with new developments almost monthly – please take heart. We are thinking of you tonight and saying a special prayer. I am convinced that having a positive outlook and keeping as physically active as possible has really helped me to fight this thing. Continue your favourite things if you can although for a while of course they won´t seem quite so important. Thinking of you. Carol
Christin
I'm so sorry to hear your news. I'm 32 and my dad (60) was diagnosed with MM 5 weeks ago too. As a family we're still struggling to come to terms with it, and have good and bad days, but it sounds like you're a very close family and are giving each other lots of support. Dad started CDT and is nearly at the end of his 1st 21 day cycle. He was in immense pain and it's crushing to not be able to take that pain away, but the pain teams are great and they have lots of options available. Luckily dad has had vertatbroplastly on his 2 crushed vertabrae, which has eased some of the pain, although not as much as we had hoped. Has you're dad had a skeletal survey to see if there is any bone damage? Fingers crossed the Velcade starts to have an effect soon.
Thinking of you all
Vicki xx
Thanks for all your lovely encouraging replies its really great to hear! We finally have a little progress, the pain team changed the doses in dad's syringe driver and today he is much more relaxed and has gained a little more movement, tiny but its progress! cycle 3 of velcade starts tomorrow so its dex time again >.<
Its crazy how things change so quickly up until now dad was eating like a horse and now his appetite has gone right down, nothing too scary hes still getting his three meals and snacks etc but in comparison its way down so will just have to keep an eye on it! Hes also sleeping so much more but I think this might be due to 2 months of 2 hrs a night and the new dose in his driver!
[b]willywinki[/b] – dad's had two MRI scans so far and both came back that there isnt any damage which is great but on Tues when they went to see the pain nurse she said that there WAS "spots" as she called them on his spine… funny how different doctors give away a little bit more information than others! they are considering booking him for another scan just incase anything has happened in the last couple of weeks as the pain has gotten worse.
Christin xx
Hi Christin
I found i had to ask questions,information was not very forth coming,I think they try not to bombard you with lots of information. i felt if they were keeping information from me,but it is just that they do not know you and do not know what your reaction will be.As time goes on this will get easier,
Your dad has a right to see any results,I find it is easier,to get it on paper than have them tell me about it as I am deaf,and thing just do not register sometimes.Personally i think this should be the norm,but it,s no;-) t
On the day Slims mm was confirmed with mri scan,I bombarded a lady named Marie,with questions,her face was a picture,by the time i finished,she asked me had we met before,I think I took her by surprise,so do not be scared to ask question!!:-S
It means nothing when a doctor says theres no compression on the spinal cord,you want to know what is there,eg tumours,lesions on bones,protein levels,type of myeloma the more you understand,the more you can help your dad my husband just wants to put all his energy into getting better,so I have taken the rest on board,so I do all the research on his condition.
Hope this has been some help to you best wishers Eve
Hi Meika & Christin,
It is always awkward to say welcome when you would rather be saying anything else but you know what it means…
On to David… (that makes 3 active on the board… I'm a Welsh David… so therefore Dai.:-)) he is bound to be in shock… the pain and discomfort will not be pleasant but they are manageable and they are surmountable, given time and the pain will become a secondary issue. You say he is only 48… so there is hope that he is not totally technophobic…meaning you might get him to interact on the board at some time… I hope so.
David needs to get off and out of his bed, he has a life to live and he has a long, long way to travel with MM, so he might as well start packing for the journey. MM, believe it or not, is akin to an extreme sport and does entail a lot of head done and yomping to the finishing line(s)… (s) because there are a lot of them and there are going to be a quite a few resting points and hopefully quite a few years of remissions, where he will feel about as normal as it is to be notwithstanding any bone damage etc., that might change his boundaries slightly.
I had my mantra 'Whatever It Takes'… and that lasted me throughout my initial chemo, stem cell harvest and Stem Cell Transplant. When I relapsed I changed it to suit and I am hopefully getting ready for my second bit of remission… David will need his mantra's, he will need positivity…. please take note of my next statement, I believe it passionately and completely…
The biggest killer in MM is NEGATIVITY… sorry for shouting but it needs to be heard. Negativity comes in many forms, including sympathetic, smiling faces and well meant endearments and encouragements… don't let them cross your threshold, don't be frightened or scared to send such thoughts… and people from your door. David need to be positive, truly positive… he has to believe that the meds will work,… they will. He has to form a trusting relationship with his medical team (as a joint, well informed partner) and then trust them and then he has to maintain a positive outlook and reaction to all his treatments to ensure that he gets the best from them… which will include great swathes of normalcy… possibly years and years of normalcy.
Unfortunately David is young and fit… far too young for such a disease BUT fortunately David is young and fit and that is going to stand him in great stead for the fight he is about to take on.
Personally, from everything I have read and consumed, I do not believe that a cure for MM is around the corner… certainly not my corners BUT I do believe, NO… I know that there are a whole bunch of meds and treatments that will knock the damned disease back a few notches as I progress… David is different… these are exciting times for MM sufferers… the same sort of fright as white knuckle frighteners I'm afraid but there you have it 😛 but David will be amongst them… and if he can last the journey, with a positive outlook and positive outcomes then he could quite possibly be in the generation where the lines between 'incurable but treatable' become very, very blurred indeed.
Lecture over… tell him to get out of bed.8-) 🙂
Dai.
Dai
i have to say it,you have a wonderful way with words.eve
P S. Slims done 22 years of yomping in Marines just told him to go and join up again, lol
Hi Christin
So sorry to hear about your dad. I am 46 and started velcade this week as Thalidomide did not work for me. I have heard a lot of positive reports about velcade, but also know that this illness and its treatment is so individual. It is so important to get your dads pain in order. I do wish your dad well and also to you. It is very hard on the loved ones. Stay in touch with the site. There is good support on here and most people have had certain side affects that they can share with you.
Best wishes Kay
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