[johnandjunediamondParticipant]

hello everyone, john here,
my wonderfull wife june has been diagnosed with MM,her treatment began on thursday this week ( V C D ) the strength of treatment at this stage i cannot say,but dont think
iv'e ever seen anyone so fatigued in all my life!!
apparently her kidney's are not in the best condition and it look's like she will have to stay in hospital during her first cycle,were just hoping they wont stop the chemo early as she desperatly wishes to be at home.as for myself i am immersed in trying to make sense of it all, reading all….absorbing some…understanding little at this point!

[VickiParticipant]

Hello John

Welcome, if you can call it that! To the forum. Know exactly how you feel, felt the same when my partner was diagnosed in 2011! In October 2011 to be exact, started with a bad back and then this! My advice is, stick with this forum and information….other web sites scare you to death!

Colin was and is still very fatigued, although he had transplant in November 2012 he call fall asleep at the drop of a hat, like now snoring away :-). Some days he is like normal, other really shattered. The treatment seemed to make him very tired but whe he was on the steroids he couldn't sleep and was hyper!

It is a real roller coaster and even now I'm not used to it, neither is Colin but hang in there. New treatments all the time. Stick together and you can get through it together. Ask away any questions 🙂

Vicki and Colin x

[johnandjunediamondParticipant]

appreciated vicki,june has fought many health battle's over the years,and is a fighter under fair circumstance's but this cancer is a filthy desease,hitting you from behind before starting a fight!!

[dickbParticipant]

Hi and unfortunately, welcome to our exclusive group.I think you've hit it on the head describing MM as a filthy desease. None of us really knew we were ill, the lucky ones have been diagnosed early enough for some treatment, many don't make it to diagnosis or treatment.

Now you are here, the best thing is to have as many questions ready for there is a lot of first hand experience here and a lot of very caring helpful people. The important thing to remember is that you are not alone, not as in a horror movie but as in the support you will receive. The carers of those with MM probably have more knowledge and experience than many medics give them credit for and each piece of knowledge may be small but the accumulative effect is enormous.

So ask away, someone here will be able to help or offer a little support.

[johnandjunediamondParticipant]

thank's richard,im sure i will have question's soon, for the time being my head is full with what's presently happening with june,and our emotions

[mhnevillParticipant]

Hi John

Welcome from me too. Welcome to June too. So sorry you have to join us. It is good June has started treatment so soon. Interesting that it is VAD. I guess most of us on here started with CDT. Shows how things are already moving on.

Take heart, though the chemo Isn't a walk in the park it does usually knock the MM right back after a couple of cycles.

Have you any reason to think they might stop the chemo early? They won't unless there are serious side effects.

All best wishes to June and keep in touch. June looks very young so may find the under 50s strand helpful.

Mavis

[johnandjunediamondParticipant]

thank's mavis,
it's vcd by the way, im sure june will be very happy you describe her so young with a recent photo!! when she's feeling a little better 🙂 ( she's 67 )
no stated reason to stop it early, monday was day 4 but i know they are concerned about her fluid throughput as she keeps vomitting it back even with suppression for sickness!

[eveParticipant]

Hi John and June

June is in the best place to start her treatment,you will almost see her gaining strength on a daily basis ,my husband had his first consultation and was admitted within 5 minutes with AKF plus hypercalcma ,doctors talking about tumours,lesions ,spine compression,I walked in with all this going on:-S

All test one over a weekend confirmed Myeloma,sign here for trials and off you go,no time for learning anything,well that how it went 2 1/2 years ago,then comes the bib big learning curve,you will eventually get use to the medical jargon,and learn to ask questions and not take things on face value,then you will become an expert on your wife,s condition .:-)

Welcome John and June just remember there are a lot of people on hear who have been were you are now,and we can help you,make good use of this forum,it can give you a lot of advice and support. Ellen or Maggi are on a free phone number,if you want any advice. One thing people do not mention much is how to tell and cope with family, I found it hard to keep repeating myself,because you are going to want to lock Myeloma in a cupboard,and try to be normal for a little while,you have to come to terms with you and Junes grief without other people,s feelings. Eve

[johnandjunediamondParticipant]

thanks eve,one or two setback's just got the anti sickness sorted and she started with the runs!!!……due to hospital policy at least she now has her own room for a while
and as you say i have noticed small changes,she was stronger today even with the dibilitating runs,

[eveParticipant]

Hi John

At least having the runs in hospital is better than home,I use to have white fitted carpets soon changed to laminated floors,Slim kept decorating carpet. A good buy is a steam cleaner,it takes half the work away,and you will get to a stage were cleanliness is paramount .

We call this a roller coaster for a reason,there are so many high,s and low,s,this disease effects everyone differently,some sail through treatment and have SCT while others just cannot get remission,the reason they put June on Velcade is it is kinder to the kidney,s,usually people start on CDT or CDR,then CDV,the only thing different is Velcade is by injection either sub cut or given through line with saline .watch out for Dextatude moments,when on high doses,they become rather (argumentative ) think they are always right!!!.be warned!!

The body will get use to the heavy drugs,you are only just beginning this journey take things slowly,there are people on here who have been living with this for many years,no one knows why some people respond well and others do not.Eve

[janwParticipant]

Hi John

Sorry to hear June has been suffering from sickness and now the runs. Feeling sick and not being able to keep any fluids down is horrible especially in this hot weather. You just need to keep asking your consultant for a different type of anti-sickness drug until you find one which works effectively for both ends. I tried four different anti sickness drugs during CDT before finding one which worked OK, but during my stem cell transplant non of them worked. My husband used to place plastic bowls around the house and in the car, just in case I was caught short with being sick because he hates the smell and can't stand clearing it up!

I hope June continues to feel stronger.

Jan x

.

[johnandjunediamondParticipant]

thank's eve,
fortunatly we have tiled floors (will have to purchase steam cleaner )
i am trying to take it slowly,but find my mind racing when i have little to do at the end of the day,i will watch for the dextatude with interest as june is not normaly argumentative;-) but im sure i will cope.

[johnandjunediamondParticipant]

thank's jan,
the anti sickness continued to work,now if they can just sort the othier end i might get her home for the weekend 😀

[sanParticipant]

Hello John and June so sorry that you are having a tough time, i recall being so very worried at this point too, and then you start learning about the illness and with knowledge and time things settle a bit but life is never quite the same and everyone has a unique experience but is also shared in part, there is lots of helpful advice and support here for you both, my Mum is stable at the moment and enjoying being at home and although limited due to the myeloma she is having a reasonable quality of life, but we wait for the next bit that is bone biopsy results and further chemo as her liver appears now to be recovering thankfully. Mum had two cycles of RCD and it hit the myeloma hard hence her feeling better but sadly more chemo will make her feel sick in due course, it is a horrid illness and for you as a carer their is nothing worse that seeing someone that you love go through this, but the better days will come for you both and with support you will learn to cope, as Eve said Ellen and Maggie are super to talk to and can advise you on the journey as will the hospital staff, and on this form you can reach out too, love to you both San x

[johnandjunediamondParticipant]

thanks san,just got back from visiting…..turns out the nurses had not been recording the sickness on the report……consultant wasn't best pleased!!
pleased to hear your mum having an UP period, june was in better spirit's today which gave me a spring in my step also:-)

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