[deanParticipant]

Great advise Rebecca .  Also on a positive note since being at the hospital lots, I’ve spoken to 2 patients who are 10yrs  & 13yrs since only 1 SCT others who have relapsed & are doing well down the drug line. Like what Richard said in his post. I got talking to one guy who refused a SCT & been lucky just on maintenance for 9 years since induction treatment so it does happen out there we just don’t hear it much. Takcare

[neilwParticipant]

Hi,

I’m new to the forum (&MM) and hoping I’m approaching the forum the right way…

My initial consultant has left the hospital, and the one I saw last week seemed to see me as an unhelpful distraction rather than someone he was supposed to help!

It would be great if someone could point me to the questions I should ask my consultant (next  appointment is late December 2016) especially around the various ‘numbers’ and also what they mean, please?

FYI- I’m in VCD treatment and just started 2nd treatment cycle yesterday.  Apparently, I’m stage 3 with a lot of bone lesions, a couple of compressed (?) vertebrae, etc., & generally feeling very lost!

 

[greg777Participant]

Hi Neil,

MM can affect people in a very individual way but the type of things I would be asking are:

– how many cycles of VCD will I have

– what is the barometer of success of the treatment

– what are the next steps after VCD – watch and wait, maintenance, SCT

– administration things like who should I contact if problems, what side effects should you be looking out, etc

Really hope this helps in some way.

Greg

[stanley-1960Participant]

Hi All,

Update on the journey. I have just come back from my latest consultancy and the mist has cleared a little over the sudden appearance of 2 paraprotiens. My Doc says after SCT he see’s second paraprotiens in around 10% of patients normally associated with reconstitution of the immune system in the first 12 months after transplant. He stated he had not seen an appearance so late 25 months in my case and could not confirm if it was due to reconstitution. Both paraproteins are the same iGg kappa which would indicate that the second (lower non dominant paraprotein) could potentially be secondary MGUS and not biclonal.As for the results the dominant one stayed the same 1.6 for the third time and the lower non dominant dropped slightly to 1.0. The facinating element is he confirmed if the second lower paraprotein is secondary MGUS their is no test to confirm benign of cancerous status at any stage including full replase. On a more positive note he did say he had seen paraproteins of my type completely dissapear as quickly as they had appeared.

best regards,

Stanley

[rebeccaRParticipant]

Hi Stanley, glad to hear everything appears reassuringly okish – well at least not sinister. MM really is a very interesting study if it wasn’t so pertinent and close to home! It is so complex I fear I would not do well in an exam but hey I am living well with it and that’s suffice! Wow 25 months..time flies scarily so but it’s all a celebration in remission – long may it continue.
Stay well
Rebecca

[stanley-1960Participant]

Hi Rebecca,

Good to hear from you hope everything is well your end. As you say MM is so complex and we are all so different with regards to our journey. With the dissapointment of the appearance of 2 x paraproteins 5 months ago i now find one has stayed rock solid and the other is dropping. So its more golf, cycling and walking on the menu for me. Talking of time flying its actually 31 months since i had my SCT. Within the Myeloma bubble i am currently on an upwards curve with potential pitfalls pushed back to the rear.

all the very best

Stanley

[rebeccaRParticipant]

Hi Stanley, Yes I am well until I hear otherwise – next appointment 1st Feb. I am almost forgetting my exact months of remission but now it’s over 3 years do feel a tad tetchy about how much longer I will have so have decided to really go for it this year in doing new things etc. Perhaps in doing so it may play a small part in keeping at bay – who knows – but I like to go with that theory of wellbeing!

[bandityogaParticipant]

Hi Stanley

Good to hear you are still doing well and in remission. I am not on technical terms with myeloma but do know a lot more now than on Ian’s initial diagnosis.

We have just returned from a week’s holiday in Playa Blanca and saw our (not) favourite consultant and Ian’s FLC rose from 295 to 331. We hope this is just a blip as he is on pomalidomide and dex and he has had CTD, Velcade and revlimid, then SCT from which he had 18 months remission. I did ask what the next treatment would be and he advised on a trial of daratumumbab and perhaps another SCT. Ian hasn’t had Farydax yet, so we will ask to see another consultant and if we are not happy will ask to see a specialist.

We don’t have many trials in Scotland and the treatments tend to consist of 2 drugs rather than 3 which shows to work better.

Hope you continue to do well and get away on holiday too.

Maureen

[stanley-1960Participant]

Hi Maureen,

Hope your holiday was a welcome break from the myeloma bubble. How is Ian coping on pom? Sorry for the late response due to project managing the refurbishment of my eldest daughters first house (very exciting). I have booked another golfing holiday with the lads to Spain in May and will be in Ireland in August( best man at a mates wedding). I thought i was a bit too old for that type of thing but hey ho. As you say there are other options for Ian with the second SCT a possibility along with the trial you mentioned. As you say FLC’s can fluctuate based on viruses and infections. I hope you are well and coping as the carer and its good to see you are picking up a fair bit of information on the disease.

All the best to you and Ian,

Stanley

[stanley-1960Participant]

Hi All,

I have not been on the site for quite a while due to busy work lifestyle commitments. I would like to share it is 5 years to the day i was diagnosed with a 4″ tumor in my chest, extensive bone damage and kappa freelights well over 4000. I am still treatment free from a stem cell transplant in 2014. Although this disease is so unpredictable i am living my life as normal as possible. I have returned to work and achieved all my ambitions in the last 2 years that were cut short at diagnosis. I eat and drink (to excess) as per pre diagnosis and play golf whenever i can. I continue to stay positive for the future whatever it holds.

Best to all,

Stanley

[rebeccaRParticipant]

Hi Stanley, Warmest congratulations – how time flies! Hope you are celebrating in excess/style. Glad to hear life is good to you – including work (I remain unapologetically work shy on my 2 days only a week still). I am now 5yrs 3 months post SCT and feel well still(hopefully confirmed by consult next week). You’ve put a smile on my face tonight as I always get great pleasure in hearing these milestone success stories and hopefully it will give a little boost to the newly diagnosed when it all seems like fighting in the dark and wondering if you’ll ever see the light again. Let’s make it a date again next year – same place!
Rebecca

[stanley-1960Participant]

Hi Rebecca,
Great to hear you are doing so well and have found the right balance for you. As you have said to me in the past staying in the light is the key. 5 years 3 months post SCT is an incredible achievement, well done you. I look forward to another corrspondence in a years time.

Best regards,

Stanley

[dickbParticipant]

Well done Stanley, like you I come on the site rarely now but do get notifications. I think there were a few of us having a SCT at roughly the same time in 2014 and it’s nice to see that a number of us are still going strong such as Rebecca. I do believe attitude has a lot to do with it. So I’m with Rebecca, reunion next year and lets see how long we can last. It’s also helpful for those recently diagnosed to show that life can go on.

[stanley-1960Participant]

Hi Richard,

Great to hear you are still going strong. I totally believe what you say its all about attitude. I have never thought why me! Instead my mantra is, it is me so get on with it. I will look forward to hearing from you again in this marathon race we are all in. If posts of this nature by us can show the recently diagnosed patients there is life out there with myeloma then we have done our little bit. Anyway must dash im off to the pub for an afternoon of gambling and drinking And if theres any money left i’ll waste the rest.

All the best

Stanley

[rebeccaRParticipant]

Hi Richard, Great to hear you are still ok – I like to keep looking on the site to see how everyone is faring.
For those that are still in the dark/twilight zone of it all my Friday has consisted of an individual tennis lesson followed by 2 hours group coaching – pub lunch and a big tennis match tonight! Life will resume from the pit stop but with a more heightened pleasure and with more assertion of priorities in life. Believe that this is a Marathon and not a sprint.
Rebecca

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