Hi Peter and Neeny
Peter you will sleep better from now till your next cycle of Dex. Though you both need to be aware that Dex can mask problems like infections and sickness so it's important to be extra vigilant whilst on them.
Another problem with Dex is coming of it. Peter you may experience a massive downer and be very moody, or maybe not such a massive downer or not be very moody, but it will affect you you will be out of character for a few days arguing where you wouldn't of argued before etc and what's worse you will come to realise its the coming off the Dex that's doing it but you still can't stop it! I manage to apologise now and blame the drugs lol.
Wishing you both all the luck in the world with your MM journey. Enjoy everything you have as much and as often as you can because it can be a difficult journey.
Every day is a gift.
Use it gratefully
Andy & Steph xx
Hi David
I haven't had any problems taking my drugs abroad on the rare 😉 occasions I travel never even thought about it lol. The only letter I've taken is for my syringes and that hasn't been looked at yet! I put my drugs in my hand luggage so they don't get lost and the liquid drugs in a clear plastic bag. Though that's all obviously for flying traveling by ferry or Eurostar would be different of course – I think lol.
Bon voyage David. Have a great trip.
Every day is a gift.
Make sure you enjoy it.
Andy
Hi Eve
You know why I don't post so often any more because we've talked recently about it.
As you know it's because my journey so far hasn't been a successful one. I've got a bl***y stubborn form of MM the the drugs won't shift and I'll never get to SCT. Slim similarly has not had a good journey.
I feel at the moment there maybe too many people joining the MM journey and only seeing the upside of treatment and not being realistic about it. Thats my personal opinion.
MM at the moment is an incurable disease that hopefully will soon become a chronic disease but unfortunately that will still mean a lot of people will still die because of MM.
I don't want to post and spoil the optimism people have about the treatment because I do believe attitude is a big help. They need support, help and encouragement. So death is rarely talked about even though it is a reality of MM. It's as you say generally only rarely talked about and usually by the ones who have been on treatment longer.
Look at Tom sailed through treatment still in remission and long may it continue. What an inspiration to all about to embark on the MM journey but he's not afraid to talk about death he knows or he thinks he knows MM will get him in the end – I'd like to think he could be cured! The first of many and why not.
Hmmm I think I'm on a Dex ramble again.
I've been on this forum less than 2 years and sadly seen many good people go before their time so I know what's in store for me. How long do I have? I don't know and I don't think the medics know but my options are running low as are sadly others on this forum.
I'm not afraid to talk about death and I think the more I talk about it the easier that it becomes to accept. That is from a patients perspective. I do think its very different for carers I can't imagine the pain and anguish that carers go through. Worrying at every mood swing, temp rise, infection, hospital visit, blood test results etc etc that their loved one goes through. The thought of losing their loved must be devastating. Putting on a brave face whilst been eaten with worry inside.
Carers get the s****y end of the stick and I have nothing but admiration and love for them all because they are the true heroes of any MM journey.
Sorry Eve I'm on my steroid fuelled hobbyhorse.
I'll sign off now Eve you know where to find me if you need a chat or a rant.
Every day is a gift
Use it the best you can
Lots of love Andy xx
Hi Jill
I'm just starting my 18th cycle of Revlamid my PPs usually hover around 17 – 21 my blood aren't good HB 95 WBC I.6 PLTs 97 and Neuts 0.7 and they're a only a little bit lower than usual for me. I think low blood counts are a side effect of Revlamid.
Dai tried Bendamustine but I think he had trouble with it effecting his Neuts and he went back to an old treatment that had worked before Velcade.
I'm 55 Jill so maybe I can tolerate the lower blood counts better than your Mum. I need to because I'm running out of options too!
Every days a gift.
Open it gently
Andy x
Hi Carol
My initial treatment was CDT and I was in and out of the haematology ward like a yoyo with infections in the first few cycles. I think they even named room 2 after me I was in there that often. I can't recall them stopping my treatment though I didn't have suspected blood clots. The antibiotics are important due to the suppressed immune system and they want to get them in ASAP hence a stay in hospital to infuse them.
Are you on blood thinning treatment? I have to inject myself once everyday! Approximately 670 times to date :-0
Every days a gift
Andy x
Hi Vicki & Colin
I was told I have to ring in immediately if I come into contact with anyone who had chicken pox, or had been in contact recently with someone with chicken pox and If someone who went on to have chicken pox.
I haven't had chicken pox and I'm on anti viral drugs – just to make me rattle more – and they did stress that it was important I ring them right away.
I don't know if its so bad as Colin has already had chicken pox but I do know you can catch it more than once though that is rare.
If it was me I'd ring the hospital ASAP just to be on the safe side and get Colin checked out. They may give him some anti viral drugs too.
Every day is a gift.
Don't forget to unwrap it.
Andy & Steph xx
Hi Peter
I would like to add my welcome to you for joining the forum. None of use you choose to be here but here we all are. We're a happy bunch believe it or not though we all have are moments of frustration and disappointment. You will find the group on this forum very supportive and full of suggestions to help you through your MM journey.
No two people's journey or treatments are identical so our journeys are personal we all react differently to the drugs. Some get through with little or no side effects whilst others have bad side effects and have to switch treatment. Some get a great response with initial treatment getting to SCT very quickly other have to battle longer to get there. Some, rare case, like me don't get to SCT at all.
My initial tips to you would be drink plenty of water, as been already mentioned 3litres a day minimum, regularly check your temp, twice a day minimum and ring the hospital for temps above 37.5 and below 36, before you go to see your consultant write down ALL the questions running through you head and write down the answers because you will forget 75% of everything said. Take along someone with you so you can discuss the meeting with them afterwards. They may hear differently the answers to your questions. It's an awful lot to take in.
When you first start treatment you will feel unwell and maybe get some infections, this is normal because the drugs they give you are very strong and not nice :-S this is why monitoring your temp is very important as your immunity will be suppressed and you may need antibiotics.
I hope I haven't frightened you but there is a lot to learn and you need to be aware that you need to look after yourself differently from now on and it is scary at first but as time passes it will get easier.
Oh another thing avoid people with coughs and sneezes – easier said than done but important.
Hmmmm I guess I've rambled on a bit, sorry, I'm on my steroids and I tend to go on a bit when on them.
Anyway way I wish you good luck with your treatment and journey with MM. I hope you get a wonderful Christmas present of a SCT that leads to a long and healthy remission.
Every day is a gift.
Make sure you unwrap it
All the best Andy
Hi Ian
I'm on Revlamid and my results were slow to show any improvement. I think it was cycle 3 or 4 before my PPs showed an improvement. I think it's known that Rev can be a slow starter.
Every days a gift.
Ensure you use it.
Andy
Hi David
Sorry to hear you've been pulled off Velcade. I only had 2 cycles of Velcade before I was pulled off it. From what I recall being told at the time was that Velcade worked quickly and effectively and if there was no major response in the first couple of cycles it wouldn't work. You managed to have 4 cycles but it sounds like the velcade had stalled in its job. Plus you were getting bad side effects too. I don't know the cost of Velcade but I guess your consultant was following NICE guidelines.
I hope you get the all from the prostrate consultant for your trip to France. Bon voyage.
Every day is a gift
Andy
Hi Garry
As Eve rightly says I've had experience of "pace" though what I had was DTPace. Unfortunately it didn't achieve much for me but that's not unusual for me because none of the first line or second line of treatments had any effect on my MM.
My MM is proving very difficult to treat but as far as I'm aware I'm a very rare case! Anyway back to the DTPace – I spent 4 nights in hospital having the drugs infused constantly through my Hickman line and a line in my arm! I think I had 4 different bags up at a time! It made life a bit difficult sleeping and going to the loo etc. I tolerated the drugs ok and can't recall suffering to much nausea.
Afterwards I was discharged to await results and an appointment was made for my next cycle. I didn't get a second cycle because my results came back disappointing with no improvement. I had a BMB that showed my bone marrow had been severely hit but the MM was still there in a significant amount so my second cycle was cancelled. I think they expect a good drop in PPs with one cycle.
Side effects were mainly a slight loss of hair not that I had much to start with! and not needing to shave for a couple of months was a blessing. I'm sure the side effects would of been more extreme if I'd had my second cycle. I think you only get 2 cycles of DTPace. I don't have any experience of Bendustamine though I've been told that maybe my next port of call after RCD.
Like I said previously I'm a difficult and rare case – my PPs stubbornly refuse to go much below 20
Whichever treatment Sue gets I hope it goes well and she gets on the road to remission.
Every day is a gift
Andy
Hi all.
Phew I'm Dex free now till my next cycle 😀 just waiting for the crash now :'-(
David – like I said in the original post those results are the norm for me and are the results I have to live with and I'm bloody well going to live with them 😉 though I must admit my neuts do make me a bit nervous.
I've been told at the day case unit if I get to cycle 25 then the Revlamid becomes free to the NHS. A goal to aim for but still not on my radar yet – I have my radar set a bit closer to home than that.
I'm glad you are getting on with plans for some holidays away I do think they give a you boost and a break from MM though they can be a bit nerve wracking at first being away from you usual medics.
Massive congratulations to you and Mo for becoming debt free 😀 what an achievement.
Eve – I'm on this regime until it stops working. Then it'll be a mad scramble to see if they can find anything else to keep the MM in check! I'm on 25mg of Rev 21days/cycle, 500mg Cyclophosphamide days 1,8 & 15 and 40mg Dex days 1-4 The only adjustment is if my neuts go down to 0.5 :-S then I stop the cyclophosphamide for a week. My beer intake goes up and down with my nausea – thanks cyclophosphamide :'-(
Vicki & Colin – I'm resigned to the fact that my PPs aren't going to dip much further I'm just happy they're stable and hopefully the drugs, sun and beer will keep them that way.
It's annoying that my back op has been delayed because it stopped us going to Belgium last weekend. No losses were occurred but still!
Tom – stable will do for me. After all you are stable too 😉 in a stable remission lol and long may you stay that way.
I try not to get p***ed off because it doesn't achieve anything and is a waste of energy BUT lol and I think Steph worries around blood test time as I do as I think the majority of us do but there's not a lot we can do about that.
Holidays, breaks and beer booked to date.
End of Sept – week in Greece. 😎
Early Oct – 3 nights in the Lakes 😉
After the Lakes off to the Nottingham beer festival 😛
And before the end of the year a weekend in Belgium to be booked no confirmed date as yet.
All the above are provisional and rely upon the skill and professionalism of my wonderful NHS medical team and the drugs they so readily supply me.
This ain't a rehearsal lets get out there and give it our best shot!
Every day is a gift
Andy & Steph xx
Hi Vicki & Colin.
Sorry to hear Colin is having problems. From everything I've read fatigue is a constant problem with MM both prior and post SCT. Though less so post SCT. I would agree with David and Dai that looking after his bones is a priority even though no myeloma is actively present because of the risk it could sneak back to being active without anyone knowing and breaks are hard to repair.
I know how Colin is feeling about his back. I start the day reasonably upright but can't walk, stand or even sit upright for to long before it gets painful and by the late afternoon I'm well hunched over. I'm waiting for an appointment to go under the knife for the "cement thing" kyphoplasty in my case to T11 and T12 hopefully to give me a bit of pain relief though I have damage to most of my spine top to bottom and the surgeon isn't very hopeful.
Funnily enough we are having my house done up too, Steph still has hers in Nottingham and that needs a little work too, but we still try to make it a priority to get away on holiday because we know that holidays will be the first to go as I get worse.
I hope they can do something for Colin's back and his fatigue improves in time but most of all that his myeloma stays inactive for a long time.
Every day is a gift
Andy & Steph xx
Hi everyone.
Sorry I haven't posted for a while – I've no real new news to post and haven't really seen any posts that needed my input or support.
I'm on my Dex part of my cycle so if I start to ramble please accept Dex's apologies. >:-(
As you probably already know my MM is classed as refractory so I won't get to SCT or remission so a stable state of MM is the best I can hope for, my PPs hover around the 20 mark. I'm waiting for my latest PPs result and hopefully that'll show I'm still stable 🙂 I've just started cycle 17 of RCD and have been on chemo drugs since Oct 2011 and I often wonder what damage they are doing to me never mind the MM? Oops starting to ramble :-/
Back to the topic when we, or should I say Steph books travel insurance she does it on a per trip basis. We get permission hopefully from my consultant shortly before before we travel and book it then. We don't book the travel insurance at time of booking holiday because a lot can change in a few months. I'm waiting for a back op appointment now :-0 and we missed a weekend away in Belgium :'-( due to the timing issue though no money was lost. We know we may have to cancel the a trip and lose the money paid out but what the hell it's only money and we travel cheap 😀 Steph always rings up the insurance companies and answers the questions truthfully 😉 any questions that we have problems with she rings the MyelomaUK helpline for advice how to answer the question. To date we haven't paid more than £190, I think, for a weekly policy. Remember all the party has to be covered with the MM policy or else you could get into difficulties getting home with the patient and recovery of money for expenses and medical bills.
Our holiday itinerary at present, for David's info 😉 , is end of Sept another week in Greece 😎 beginning of Oct three nights in the Lake District 🙂 and the middle of Oct Nottingham beer festival :-S hopefully those plans will work out but if they don't we'll readjust as and when possible. Oh and we're still planning on getting our weekend in Belgium sometime before the end of the year.
Our philosophy is do it now whilst we have the chance as this maybe as good as it gets. If I stay stable for long enough maybe money problems will surface before more serious health problems do. To tell the truth that's what we're hoping for lots of trips and funding issues lol.
Right it's 8am and I'm done rambling I'm going to try a get some sleep, last Dex day today.
If you can holiday and party through this awful journey, enjoy what you have and make the best of it.
Life is no rehearsal – this is it. It's not to late to make lasting memories and good ones at that – if your well enough don't delay.
EVERY DAY IS A GIFT
All the best to everyone
Andy & Steph xxx
Hi David
Sorry for the delay in answering you question re the letters. I've been busy riding the Dex rollercoaster. I didn't need my letters this time I just mentioned to the customs man about my needles etc and he took my word for it. Though they went through the X-ray machine and he mentioned it to the operator. So I've still got my letters and "just in case drugs" all safely tucked away for the next trip – fingers crossed.
I know everyone is different and everyone's journey with this awful disease is different but since last October we made the decision to do as much as possible whilst we can. I'm not where I'd like to be health wise and I know I probably won't get any better than I am at the moment but we are going to do our best to enjoy what we have. It's simple to say but a bit more difficult to carry out. So tomorrow it'll be flight hunting again got a date set, the day after the info day in Newcastle, got a destination – kefalonia again – just need the tickets and a bit of health luck and we are away 😎 Now where's that magic credit card?
Every day is a gift – no matter how you spend it – enjoy it the best you can.
Andy
Hi Tom
They're long hospital visits! 4 months now extended to 6 months you must get bored spending all that time there :-S LOL
Seriously though Tom it's great news your doing so well and long may it continue.
I'm getting myself a bottle or two of that magic vodka to see if it'll do me some good too.
Every day is a gift
Andy
