[andygParticipant]

Hi everyone
Just a quick update. I've started cycle 19 – guess you hadn't noticed that

[MalParticipant]

Hello Andy,
Im new here and just started cycle 1 on thalidomide, you seem many times down the road, im told six cycles then bmt, who are you getting on with things ? As you can imagine, I have no idea whow things will go and what to expect , best wishes to you
Mal, age 59,

[dickbParticipant]

Mmmm… Posting after 1:00 AM is a bit of a giveaway for being on Dexy, I tend to do reading or scribbling notes between 2 and 3:00 AM but fortunately I've got a week's rest before I start again. At least I'm not biting everyones head off so much at the moment.

[andygParticipant]

Hi Mal
First of all welcome to the club. None of us want to be here but unfortunately here we are. You'll find the members on here friendly,helpful and very supportive. You can come here to rant, moan and scream if it helps and you alway get a helpful reply. Sometimes we even get to laugh.
My journey with MM hasn't been a very successful one. I was diagnosed Oct 2011aged 53 and put on CDT with a para protein reading of 49. Unfortunately after 5 cycles I didn't or rather my PPs didn't respond to the treatment! I was then tried with PAD, a Velcade combination that too never had any major impact. Next they tried DTPACE which again didn't have any major impact to my PPs levels and I was classed as refractory and told Auto (self) SCT (bmt) was out the question now 🙁
I was then put on Revlimid and Dex and sent to Newcastle Freemans to see Prof. Jackson for a second opinion and discuss the possibility of a donor transplant ( Allo SCT ) He suggested adding Cyclophosamide to my treatment.
To cut a long story shortish! Allo SCT was ruled out too and I'm still on RCD. It's been keeping my disease stable and I will stay on it till it progresses. My PPs hover around the 20 mark. As you can see I'm on cycle 19 if I get to cycle 25 then the Revlimid becomes free to the NHS – saving them approx £400 per tablet.
Anyway Mal that's a little of my story – luckily for everyone else I'm a rare case.
What can you expect – for me and most others the first 3 or 4 cycles are the worst. You have to get your head around this horrible disease and your body has to learn to cope with the very harsh chemicals you take. I got plenty of infections in the first few months and felt pretty rough. Hopefully you'll have a smoother journey than I and your PPs or however they measure your MM will fall quickly and you will go forward to SCT not everyone chooses the SCT option. From what I've learned since 2011 on here it's not a pleasant process to go through but some do seem to sail through it with few problems with others having more. For me it sounds like you get the same problems I had when I started my journey. Mouth sores, throat sores,hair loss, eating problems, mad dashes to the toilet, fatigue and feeling very ill to name a few. However nearly everyone to a man or woman says it doable and worth it.
Hopefully after transplant you'll achieve remission and you'll come off the drugs and gradually begin to feel " normal" again. Maybe return to work and continue on with your life though maybe with a different outlook on things. You may be put on a maintenance course of drugs but that'll be up to you and your consultant. Some go along that route some don't as the like being drug free. The length of remission varies from person to person some getting years and continuing to be in remission some getting not so long.
Once relapse occurs the treatment cycle starts again with possibility of another SCT if enough cells were collected first time round.
That's a brief outline from what I've learnt. No two people's journey is the same and treatments do vary accordingly. If you hit a problem contact your specialist nurse or day unit immediately the sooner the better. Ask for advice on here too there'll be some who's been there before with tips and advice but I would emphasis ringing the hospital first especially if you have a high or low temp or are feeling unwell. Don't mess about trying to get an appointment to see your GP. The telephone help line on here is a great help too. You will learn so much over the coming months it can be difficult to take it all in.
Good luck with your journey with MM Mal I hope it's a long and successful one.

Every day is a gift
Enjoy them

Andy

[andygParticipant]

Errr hi again my initial post didn't upload properly so I've tried agai!

Hi everyone
Just a quick update. I've started cycle 19 – guess you hadn't noticed that

Every days a gift.
Unwrap it gratefully

Andy xx

Ps. Oh you want a little bit more detail? Ok – Had my usual blood tests Friday and picked up my carrier bag full of drugs my nurse forgot to write my blood results in my chemo book the only result I know is my Neuts are 0.8 not low enough to warrant adjustment of my regime.
I've been feeling ok this week so I have been making the most of it the past few days. So Friday I went out and had a few beers Saturday night we went out for a few drinks and today oops yesterday Sunday we enjoyed ourselves so much we went out twice. I know the next few days I'll be feeling nauseas, because of the chemo Eve! not the beer, so as they say we were making hay whilst the sun shone – though it was cloudy here lol.
Anyway I'll post my blood results when I ring in and get the next week. Now I'm going to try and get some sleep Dex permitting.

All the best to everyone

Andy xx

Pps. I had to post this twice as it didn't upload properly the first time so it's taken a long time. I didn't know iPads fly so well lol

Andy.

[andygParticipant]

Hi Dick
Dex is a bit of a nuisance fortunately I only take it for the first 4 days of each cycle. I read too and watch films. Tend to turn over and try and sleep just as the wife is due to get up for work :-S
Hmmm time for todays Dex.

Every day is a gift
Enjoy

Andy

[eveParticipant]

Hi Andy

I cannot blame the chemo or beer in my case,it's the wine,and do I pay for it the next day.:-(

Slims on week off,hoping his nuets recover in time for bloods on Friday,having another full body ex rays,cannot walk very well,20 mts is the limit and not improving,only since clot removed from artery,vascular surgeon ,does not think it is artery!!!,my bat wings are turning in to muscle pushing the wheelchair,makes you realise how places are so unfriendly to wheelchair uses.

19 cycles are you getting the full combo CDR and what dosage are you on!! Love Eve

[andygParticipant]

Hi Eve
I'm on full strength chemo Eve, 500mg cyclophosphamide days 1,8 &15 of cycle, 25mg Revlimid days 1 – 21 of cycle and 40mg of dexamethasone days 1-4 of cycle. I do have to stop the cyclophosphamide if my Neuts go below 0.7 but that's only happened a couple of times and I only stop it for I dose.
I'd better keep my quips to myself if your building up your arm muscles :-S as I bruise and bleed easily lol
I hope Slims X-rays come back clear and can get back on his feet soon.

Every days is a gift
Even when it's raining

Andy xx

[MalParticipant]

Hi Andy,
Thanks for your contact, as you caan imagine I'm just gettin to gripps with all of this and not up on the ternminology at all, dont even know what my PPs started off at , but ill be sure to ask at next appointment in a couple of weeks .
Any other tips I should ask about from your experiance ? Fortunately there is a good cancer centre just down the road here in preston and all the staff are really nice. I have been reading a lot of peoples journeys on here and they all seem very different, some seem to be doing really well and others are really having the toughest time , the risk of infections seems to be a really big priority, do you have to cut yourself off or just take a chance? I suppose just a common cold can put you in hosp? Karen, my partner is bein great about stuff and is givin me blood thinning shots and keeping the house like a sterile environment! I expect that's all we can do. Thanks again for your help. Mal

[andygParticipant]

Hi Mal.
The first thing I would do is purchase a digital thermometer and check you temp 2 or 3 times daily. Anything over 37.4 for more than a few hours and you should ring the hospital for advice and anything below 35.8 do the same. I've not had a low temp but have been above 37.4 several times, I think 39.9 was my highest, and this was due to infections and I was admitted to the haematology unit for intravenous antibiotics. It's not something I would try and be manly about and try and fight of yourself – infections are dangerous. As you gain experience you and Karen will learn to recognise the signs of infections. Moodiness, restlessness, shivers, chills and generaly change in personality but the thermometer will tell all. My wife picks these things up and tells me to check my temp even though I feel ok just to make sure and sometimes she has spotted and infection coming on. It's a problem when on steroids because they can mask infections and when taking paracetamol they lower you temp so you have to be aware of those things. Cuts need to be cleaned ASAP you need to be careful what foods you eat salads and fruit need to washed well. I steer clear of buffets and salads in pubs or at parties etc.
The reason for all those precautions is the fact that MM depresses your immune system and so does the chemo therapy drugs. When you have your blood test the one to lookout for is your neutrophils anything below 1.0 and your classed as neutropenic and you need to be exta careful. Mine are very rarely above 1.0 last reading was 0.8
Tell family and friends to keep away if the have sniffs, coughs or are under the weather themselves. Avoid crowds if possible – buses, crowded pubs etc a good excuse to avoid shopping 😉
If you haven't done so already ring this web sites helpline and they'll send you out free of charge booklets which are an excellent guide to the does and don'ts and cover just about everything. There is lots to learn and it can be quite daunting but reading the guides a few times asking questions on here and you will gradually get to grips with it. You will need to modify your life style but over time all the precautions you need to take will become second nature and your family will learn to stay clear when appropriate and your friends will do the same. It does sound like your life gets put on hold, and sometime it does, but being sensible you can still get out and about and enjoy yourself. I'm off to Greece in a few weeks time health permitting and I'll be stuck on a plane for 4 hours with lots of strangers with all sorts of bugs but as long as my consultant give me the all clear I'm off. She gives me some emergency antibiotics and a letter for the local docs in case I get into trouble. It's a risk going but you've got to live.
Another biggy is fluids drink a minimum of 3 litres a day! Mainly water though other drinks count towards the total. Unfortunately alcohol is not recommend towards the count. Tea and coffee does though not to excess.
The guides will give you advice on foods ad drinks.
Oops sorry I'm rambling on I'm on my steroids at the moment and they have that effect on me. As well as keeping me awake at night.
Information is king so read up as much as you can and Karen as well and over time everything will hopefully become second nature.
Don't ever be afraid to ask questions on here no matter how trivial or silly they may seem they could be important. Get Karen to read the site as well and she will get an incite into the MM journey. I think the carers have a harder time of it than the MMers. Maybe Karen could join and post on the site too it could help her with the MM journey.
Right I'm going to stop rambling now and try and get some sleep.
Keep in touch and best of luck with your MM journey.

Every day is a gift
Use it fruitfully

Andy

[eveParticipant]

Hi Andy

Even though it,s only since he had a clot in the artery moved they do not think its from that,Slim thinks its his hip,he had a. Hip replacement that was never really successful ,they did not cement it ,put up with the pain,but was able to walk.

Consultant doing xRays just in case it's Myeloma,but said if its the hip,he has to learn to live with it,as chemo more important,the good thing that has come out of it,is the stubborn b——-r has decided a scooter is on the cards!!!

I asked about drugs because Slim is on half that quantity,rev 25m every other day 20m Dex same routine cyclo not sure of dose,when I asked about upping them,consultant said the never do that,only allowed to lower them,but I noticed someone on here in rev not working had his cyclo upped,just wanted to know what the standed treatment is..

Thanks for info will find out who makes these decisions on dosage when next at hospital. Love Eve:-0

[andygParticipant]

Morning Eve.

I didn't start with cyclophosphamide that was added to my regime after a few cycles.
I keep looking at people in scooters and wondering to myself how long I can get by without one. Hopefully I won't ever need one but who knows. I'm in for my back op on Saturday if that goes well it may help with my walking 🙂 I hope they can do something about Slims hip.

Every day is a gift
Time for me to get up and enjoy it

Andy xx

[dickbParticipant]

Good luck with the back on Saturday.

Richard

[sanParticipant]

Hi Andy, yes good luck for saturday hope that all goes well, San x

[VickiParticipant]

Andy

Two things, you are going to win the worlds longest posts on this forum fuelled by dex 🙂 LOL. Second, all the very very very best with your back op on the weekend, everything crossed for,you. If you can bear to think of it, what re they going to do? Colin I s having physio at the moment to see if that will help, before any operation! Hope steph is bearing up too. Good luck:-) 🙂

Vicki and Colin x

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