Hi Sian,
Thanks for keeping us updated. Relieved to hear it isnt anything cancerous – that must be a weight off your mind. I hope that now they know what the issue is they are able to treat it and relieve some of the pain and discomfort for you xx
Hi Sparks,
My dad had his SCT back in 2013 so, whilst it was a long while ago, my advise echoes that of Mulberry. We found very much the same, that the ice sucking is not the most pleasant at the time but well worth it to avoid the sores. Dad moaned like crazy but got way without any sores so that was fantastic.
Dad’s hospital also had a fridge available for use though he mainly stuck to hospital food but definitely worth finding out what food storage/prep facilities are available to you as you won’t always fancy what is on offer so having a few bits on stand by helps!
Good luck with it all and hopefully it wont be too long until you are back to life as near normal as possible x
Hi Lilib,
Just adding to what has been said already, my dad didn’t require an NG tube either. I fed him ice non stop before, throughout and just after the melphalan infusion (despite his complaining! He unfortunately isn’t an icepop fan so it was a bit boring!) and it did the trick and he had no issues with his mouth/throat afterwards. Hopefully the discussions you have with the hospital team regarding the NG tube will give you a positive outcome and reassure your husband. Good luck! xx
Hi Peter,
That must have been a good birthday present! Hope Andrea had a lovely birthday and you were able to get some good celebrations in on both fronts!
How have the tests gone so far? Have you heard back from the consultant on the results?
Very happy to hear the new tablets are agreeing with Andrea. Good news all round and long may it continue! xx
Hi Peter,
Congrats on completing the chemo! Sounds like a very positive consult with your SCT Doctor and hopefully answered any questions/concerns you had? Did the heart tests go ok? Hoping they’ve signed you off as all good to go for the SCT and not too long to wait for it.
Glad you’re both doing well and yes please do keep us updated on how you are both getting on xx
Hi Sian,
Happy Easter to you too.
My dad had an MRI recently and it took a few weeks to get results back but when he did it was positive so I’m hoping it is the same for you. Not long until your appointment now and then hopefully you can get some answers and start to put into action any treatments needed.
I’m glad you’re still able to get out with the doggy despite the hip pain and hope it wont be too much longer until you can enjoy pain free walks again.
Take care and good luck for the 5th xx
Hi David,
Sorry to hear you’re feeling sad & anxious at the moment. It is a very tough thing to go through, not knowing what is coming and how you’re going to feel so not uncommon at all. Try your best to keep focussing on the positives. Whilst there are few more months of treatment ahead of you yet, just take each day as it comes along and with all the advances in treatments it will hopefully not be too long until you are back to a relatively normal life again! Great that you haven’t any major side effects right now, especially with the weather being nicer-definitely get out and make the most of the sunshine before it disappears! Sunny day always seems to help lift my mood so hope it does the same for you. Hang in there and reach out to us or the infoline if you need us xx
Hi Emma,
It is good to hear that you are starting to feel a little better. Hopefully the anxiety around your and your family’s health will start to improve over time, but if not, do seek out support as Rich suggested. Don’t feel you have to struggle along alone.
I am so pleased your mum had a happy and healthy life up until the last 3 weeks which will leave you with many happy memories of her. I hope you continue to feel better and we are all here for you if you need us xx
Hi Peter,
So pleased to hear Andrea has got back to doing some of her hairdressing and is feeling better. Long may it continue! Did you find out when your SCT will be? Hope the chemo is continuing to go well and you haven’t long to wait for the SCT. Take care x
No problem David. Good luck with everything and keep us posted on how you’re getting on x
Hi Emma,
I’m so sad to hear about your mum. One of my friends lost their dad due to late diagnosis of MM many years ago and its such a shame that awareness is still low, despite the work of Myeloma UK to increase awareness.
I can only imagine how much you must miss her. Thank you for being so brave to share your story. I wish you and your family all the best during this difficult time and send you much love. Take care of yourselves xx
Hi Elaine,
One of the discussion forum volunteers here. Great to hear that DVD route has worked so well for Ray and he has been able to return to almost normality. Hope he continues to stay well. My dad unfortunately didn’t have much luck with the DVD but is now on a new combo so fingers crossed this works well for him. He’s already feeling much better since the change. It just goes to show what a unique condition MM really is. All the best for you and Ray with the continued treatment x
Hi ree2112,
Sorry to hear that you’re suffering with your back pain at the moment and still not having much joy in getting appointments in. We are in similar position where we feel like we are constantly asking about appointments. Dad’s ended up phoning to book in his own blood tests on a number of occasions as they seem to keep forgetting to organise this for him! He’s doing ok, thanks for asking. Since his treatment regimen change he is feeling much better. Still too early to know if the treatments are working as only just commenced cycle two, but just nice he can get back to bit more normality!
I am pleased to hear you have a face to face scheduled with your consultant next month. I hope that it comes to fruition as we have seen many different people over the past year when it should be with our consultant. Some have been good, others not so much! I’d definitely say to use the appointment to press home all of the issues you have. When we finally got to see dad’s consultant after the 3 month absence of any face to face contact, I went in with a list of everything and was like a dog with a bone and didn’t stop until we had come out with a referral for an MRI, colonoscopy and nutritional supplements and offer of dietitian referral (they didn’t seem too concerned that he had lost two stones so I made sure they knew it was an issue!!). I don’t know if you have anyone going along with you to the appointments, but we’ve found since we have been allowed back in with Dad, having a second person there to push points home and pick up on bits that dad has forgotten to mention (his treatment is making him quite slow mentally at the moment so within time confines he has difficulty getting to the point of things so has helped to have a [prompt/second voice).
I’d definitely keep pushing in your appointments for results/answers as you have been doing and follow up with the GP to get answers on heart trouble because even if it isn’t at least you can go back and say I’ve had that clearance so it is the treatment etc.
It is frustrating having to deal with the admin nightmare on top of the concerns of your health and treatments that take up so many of our thoughts at the moment, we could definitely do without it. Good luck with the consultant appointment and make sure you keep pushing for answers! xx
Hi Caroline,
Great to hear your husband is feeling stronger each day. Long may it continue. Hope the consult goes well and you get all the answers you need. Take care x
Hi David,
Another of the discussion forum volunteers here.
I recall the shock of my dad’s diagnosis back in 2013 which we assumed was just a muscle pain then it seemed it suddenly went from that to pneumonia, hospital admission and the MM diagnosis-the dreaded C word… and hearing it was a terminal cancer was a big blow. However, as many have said, you soon realise that it is a very treatable cancer and I always remember one of my dad’s nursing team saying it was one of the ‘best’ cancers to have if you have to have one, because of the huge advances in research and treatment and this has stuck with me.
Dad had dexamethasome, thalidomide and cyclophosphamide first time which he luckily had few side effects from, aside from the previously mentioned ‘roid rage as we ‘affectionately’ termed dad’s mood swings from the dexa and his ballooning from it too. Following the SCT it took probably a year for his energy levels to return to normal (he was always zipping around and out in front on walks prior to MM so if you didn’t know him, you wouldn’t know anything was amiss but as a family we could see the time it took to get back to normal). I’d definitely echo the previous response about taking as many notes as possible. I took a notebook along to all of dad’s consults (and still do!) and note everything down so I can refer back to it or look things up where needed and ask as many questions of your consultancy team as you need. They were a huge help and support for us during those initial months where you’re still trying to process what is going on.
Dad had 7 years of remission following his recovery from his SCT and lived a pretty normal life during this period. He’s currently undergoing treatment for his first relapse. Initially it was treated with Daratamumab and Bortezomib – unfortunately he did not get on with this combination at all and was quite poorly through it and he’s now on a different mix and much much better, so if you do suffer side effects make sure to flag them to your team as they can help where they can. It is so nice to see dad feeling more himself even though he is still undergoing treatment. Best of luck with it all and keep that positive attitude going, it will definitely help 🙂
We are all here to support you throughout the journey, so don’t hesitate to come back to us or call the infoline on 0800 980 3332 if you have any more questions/concerns. Take care x
