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Hi my son who is 28 was diagnosed two weeks ago with myeloma. He was admitted to UCH on the 27th December 2017 and will be starting his chemo today. Emotions are very high. Any advice on how to handle everything?
My heart goes out to both him and you; he’s so young! This is supposed to hit people over retirement age, I was told I was young at 57, but it seems to be getting younger and younger.
I was diagnosed in January 2017 with Non Hodgkin’s Lymphoma, which was fortunately isolated to one tumor behind my right eye. A month later I was diagnosed with Myeloma. I didn’t start treatment until May as they wanted to deal with the Lymphoma first so I had a series of radiotherapy sessions.
Unfortunately for me both the Chemo drugs they have tried for my Myeloma haven’t worked (first I had VTD and then CTD) so I am being admitted tomorrow for DT PACE, which is a combination of four chemo drugs given to those of us that are refractory (resistant to treatment) so I’m hoping it will work. Please don’t get alarmed as 80% of people respond to these Initial treatments; I’m the unusual one! The aim is for me to get to stem cell transplant, as it is for most of us that are on the younger side because it gives us the best chance of remission.
You don’t say what chemo he is going to get or what his symptoms were which ensured his admission. If you know you can look everything up on this site.
Stay calm and try not to panic; I know that’s easier said than done! Take one step at a time. Myeloma is a complicated condition and manifests differently in all of us. Personally I have Light Chain Myeloma. Find out what type he has and what damage it has done to his body if any so you know what you are dealing with. Ask lots of questions.
I suggest you then read up as much as you can from this web site; the information is excellent. You really do need to get your head around this condition. I felt much calmer when I was able to have a discussion with the consultants having had some back ground knowledge. I can recommend the info on Initial Treatment and there are info sheets on every type of chemo on here. The help line is also great if you want more info.
Lastly I would recommend the UK Myeloma Support Group Facebook page, I find this invaluable. This is for people with Myeloma and their carers – you may not see yourself as a carer but it just means the relatives that are trying to cope with it too! If you have a question about anything you can guarantee that someone out there will have had it, know something about it or point you to the relevant info! You also get an enormous amount of support from those in similar situations.
Best of luck to you all.
Thank you for your quick response. He started with back pain and went to GP several times. Finally after six weeks they sent him to A & E and thats when after several tests we received the diagnosis. He will be having thalidomide tablet steroids and and injection.
Hi there,
So sorry to hear about your son. On the positive side UCLH are one of the top hospitals specialising in Myeloma/ M.M in the uk and have 1st class specialists in this field so please take this on board and know that your son is in good hands.
I am up at UCH tomorrow for an update on my own treatment plan prior to a hopeful SCT.
Try to keep positive as myeloma diagnoses has moved forward a very long way with new treatment plans / drugs becoming available.
Keep strong your son is young and I’m sure will be healthy enough to fight this ok .
Thinking of you both
Dx
<p style=”text-align: left;”>Thank you so much</p>
If he’s having back pain he will probably have an MRI, CT etc to see what’s happening in that area to inform the treatment plan, if he hasn’t had that already. Ask questions as Myeloma can affect the bones, especially the spine.
If he’s having Thalidomide, a steroid (dexamethesone) and an injection this is most likely Velcade. This treatment is know as VTD, the most popular form of Initial Treatment. Read this and it will tell you about it.
Velcade®, thalidomide and dexamethasone (VTD) and myeloma Infoguide
This is the link to the general info for newly diagnosed patients.
This is the link for the carers pack.
We are all thinking of you.
He has had CT MRI etc and will be starting VTD. I have heard cannabis oil is very good.
I personally don’t take it but I know some people do. It can be difficult to establish whether it’s the drugs that are working or the cannabis oil. Post a question on the Myeloma UK facebook page and there will be people that will give you links. Talk to the team as they may have views on it. I guess it’s a personal decision but whilst on treatment I would be concerned it could interfere with it.
Hi – So sorry to hear your news – I was 50 when diagnosed has velcadd n dex followed by an SCT and remain in remission to date and physically life is back to normal. It is no comfort but is age is a very good factor in treatment/options. If you choose to look at survival stats beat in mind the average age of diagnosis is around 70 where there are other health issues to contend with also. He will sail through treatment and the SCT will be a breeze for him due to fitness levels etc. Also, due to age he has so many more options available to him like a donor bone marrow transplant also. The important thing for you all to grasp is he is in this for the long haul – a marathon not sprint. So no rush to know everything now – trust the consultants on treatment options – what you all need to concentrate is your mental health. The sooner you all find coping strategies that work for you the better, MM by its nature of remission and relapse cycle means you have to learn to live with this well and banish the inevitable negative thoughts. I have tried lots of things – mindfulness is very effective, exercise to me was my saviour, for others it could be focusing on hobbies, pleasurable things to outweigh the down times. Also, whilst you may wish to research everything do not offer information to him – let him go at his speed- be there if he wants to talk about it and be informed for him but only when he wants the information. I couldn’t look at the internet for a long time and my questions to the consultant were asked when I was ready to take the answer. On diagnosis I was in shock, in mourning for the life I had and the future I envisaged, it takes time to come to terms with it. Make no mistake whether in remission or relapse it is now with you all forever so focus energies on how you can all mentally cope/adjust to this new scenario. During/after treatment I always had little treats planned – nothing costly – just some quality “me” time doing what I enjoyed – it is all a balance. Be there for him when he wants it – be ready to kick him up the bum if he starts wallowing (no kid gloves) and seek out the positives throughout. This really is a mind game so get your game heads switched on and you’ll all come through it fine. From a personal point of view – I only wanted positivity – no tears (save that for bedtime) – no sad faces – I wanted a pull yourself together attitude “it’s hear and we’ll beat it” philosophy.
Early days, no rush, be calm, consistent and positive
Rebecca
Thank you Rebecca. I only cry when I am alone but he is my baby although 28. Just got engaged opening a new business and then bang. We will beat this together. He has a fantastic network of family and friends.
That sounds just what the Dr ordered, lots of distractions and lots of positive focus on the future. There is no doubt he will get through it but it is inevitably a long and winding road – he is young and fit – one of the greatest assets going into treatment but it is small consolation for having it so young. At 50 – and very fit – I wished I had got it at 70 and had 20 more carefree years before a more arduous task but as someone once said “ Life is not a matter of holding good cards, but of playing poor cards well”. One of my coping strategies was collecting motivational quotes and my mantra one was “worry does not empty tomorrow of its troubles, it empties today of its strength”
Hello, very sorry to hear about your son – who is VERY young to have MM diagnosed. But I have to say that the VTD (Velcade, thalidomide and the steroid – dexametasone), can have an exceedingly GOOD outcome regarding the MM nasties. I had this combination several years ago, and the light chain version of MM that I have – was frankly blasted by the VTD treatment. In fact it was so good that at one stage my lovely lady consultant, jokingly remarked, “I wonder if there’s been a mis-diagnosis!” Unfortunately there’s not, but in simple terms – the VTD option can be remarkable, and works with a very large number of patients. May I wish your son (you and your family) my very best wishes for the New Year and future good health.
Peter
Thank you so much Peter
Really sorry to hear your news. I was 36 when diagnosed and it knocked me off my feet. I’m almost 3 years in now though and feeling well, but as others have said it is a long road so look after yourselves and take things slowly. Any questions I can answer from a relatively younger person’s perspective, i’d be happy to help.
Greg
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