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tom 10 years, 11 months ago.
Hi everyone
Well am sorry I have to tell you my Myeloma has kick started itself back into our life’s .
After four years of remission I got the results Thursday (5th dec) having a BMB on the 30th Dec then pet scan (date to be arranged) then in new year discussion with consultant about new treatment I will be having.
Was it a shock yes wanted more remission but that’s not to be so it’s a dust down and get on with it.
Might be Velcade and something I think so any advice (scary or not) can do with.
Hope your all doing well.
Tom onwards and upwards x
Oh no! But you still must feel blessed with your 4 years in remission and drug free……let’s hope I manage that long. From all I have read, Velcade seems to be very effective. In fact, that is what I was going to have if I had transferred to a clinical trial at University Hospital. Given that my numbers are rising after only 3 weeks off CTD I am sorry I didn’t chase the Velcade. You know even in Australia it is now used for initial treatment, but here in the UK they are still only offering CTD as first line treatment. Pet scan I have not ever been offered but seems it is standard in the US. Where are you being treated?
Carol
Hi Tom
Well this is a post I didn’t expect to see for a long time. It must be so disappointing, especially when you’ve had such a long drug free remission.
You must be at an advantage though as your body has had a good long break from drugs, so it should respond well to the next attack.
As you say, “just get on with it”. That’s the attitude I hope I’ll have when I get to my first relapse.
Very best wishes Tom.
Michele x
Well Tom, a real bummer I’m afraid. As for Velcade, they do say that it will hit MM hard initially and then be less effective. I have had Velcade since the end of June and have just finished the last session – Stemcell harvest on Monday.
The biggest thing is the pain I have from the Neuropathy in my feet. This started during treatment and got worse after treatment finished. My doctors says it will get better in the next 2 – 3 months. Apart from that I haven’t had any other side effects.
I just hope for you that it is still manageable and that they can stop it from being too severe. Time to pick yourself up, dust yourself down and carry on.
Richard
Hi Tom, totally gutted to hear your news. I started 2nd round of treatment 1st due to kidney probs and had velcade and 40mg dex – had it once a week every week (no breaks) for 8 months – met another ladys doing this at Scunthorpe but on this site a lot seem to have it twice a week for 3 weeks then a weeks break? – think mine was more copable. Made me tired but not debilitatingly so – played in the tennis league, went to the gym, brisk walked 4 miles most days (this may sound excessive but exercise to me was like an anti depressant (newly diagnosed then) and the more I exercised the better I felt all round – determined not to alter my life etc).Had to go to bed at 9 – 10pm and the moment I closed my eyes I was out for the night. Had some signs of PN in last 2 cycles which went a while after treatment. Finished this July and waiting to SCT at Leeds when a beds available (been waiting 5 weeks now!) but not had any rises in light chains since end of treatment tho’ only got a 95% drop. Met a woman who had 2 yrs remission on this and was trying it for a second time. If it suits you I think it’s quite a “kind” treatment with just fatigue and PN to watch out for – tho’ think you are so mentally strong you could probably push through the fatigue. Good luck, Rebecca
Hi Tom,
Phil and I were both sad to hear your news but we know you will face this part of your journey with your can do attitude that has so inspired both of us since we joined this forum.
Phil had Velcade with dex and doxorubicin as his first line treatment and had very few side effects and responded well to the treatment. Neuropathy, as has already been mentioned, is something to watch out for. Phil had his last doses of Velcade reduced because of the peripheral neuropathy in his feet and unfortunately he has been one of the unlucky ones and more than a year later the neuropathy is still present.
Megan
Hi folks
Thanks for your support it really means a lot.
Carol I do feel blessed four good years was more than I expected and to be honest it’s not that much of a shock to us.
I am being treated in Scunthorpe General under Dr Jalihal and the Velcade would as he said in 1998 be his first choice but at that time they wouldn’t let him.
As for the pet scan he says he will book one.
Michele, you are correct I will fight this with determination like the first time.and I hope you don’t need that attitude for many a year to come.
Richards, am already dusted down my friend all ready for the next battle, I have read good news about the Velcade also since my relapse read it all I think he he.
Good luck for Monday drag them blight ers out in one hit.
Hi Rebecca, well am not sure how many days as yet will have to wait till I see Dr J next time he will be doing my BMB I hope he can turn the screw thing as he is only tiny lol, I like a good long walk as well it keeps my heart going and makes me smile x
Thanks you all
Tom onwards and upwards xx
Hi Tom
I can tell you lots of hospitals do not do Pet scans ,Babs told me the reason why is the amount of rays it has to use,this explains why Slims consultant is against Pet scans,he says it will not tell you what is going on in the Bone Marrow,but when you have no firm readings for PP or light chains,it’s a long time to wait between BMB,Slims heading for his eight one.
The consultant asked him did he really not mind BMB???Slims just says if it’s the only way to find out!!!!!
You know the general guide line half that time again,and a lot can be discovered in two years,and some people get more,lots of treatments after Velcade as well,so all good news!!!!
I would have liked Slim to have been given Velcade again,but they still have rules,one it has to have worked and two at least a year between Velcade!!!
I wish so much you were not in this position,just keep running Tom,it’s just nipping at your heels. Love Eve
Tom my lovely you and a few others were the first people to reply to my posts in 2011 when I needed support and you have been a diamond. A few of us share our worlds on Facebook and Twitter and you are always there with a witty post! Henry knows you through me and was sad to hear your news. I did wonder if I should have kept quiet?? But You never know we might come up and visit sunny scunny one day:) tom you are strong and will kick this blip into touch. Henry has had neuropathy in his hands and feet since taking the thalidomide and the damage is permanent for him but it doesn’t stop him doing the hoovering and pushing the trolley round tescos;) we wish you all the best for your next lot of treatment but in the meantime enjoy Christmas and stock up on the voddie!! You know I’m here if you need a chat. Take care and all the best to Elaine 🙂 love sarah and the old boy! Xxxxx
Dear Tom
What a blow for you, but you are right you just have to get on with it! I finished 8 rounds of Velcade in November, my feet are a bit numb still but improving every day. Energy levels not brilliant but…. I go back to work in January and my light chains are down to 7. It is all unpleasant but doable. So my friend its onwards and upwards again.
Love Helen
Hi Tom.
I already knew of your sad news via Facebook. I’m not going to tell you how everything will be ok and how great Velcade is because you know better than most, excluding the medics, the pros and cons of most treatments.
You’re one of the longer serving fighters on this forum and I wish you well in the next phase of your battle and that you’re around for a long time yet sharing your experiences and humour.
Wishing you all the best mate.
Every days a gift.
Onwards and upwards.
Andy xx
Hi Eve:: well am sure he said pet scan?? but we will see lol, yes i know it should give me another two ish years and am happy with that as we never know what will come next (that cure sounds good though) I have a good sprint on Eve dont worry about that and when it gets too close I will turn round and hit it head on and trust me the Myeloma aint gonna be Happy he he. xx
Sarah and the Young Boy 🙂 , tell Henry not to be sad I aren’t so I would prefer Henry to be bright and breezy as that will help both him and I to get through this next hurdle, Vodka at the ready xx
Helen:: am pleased your PN is getting better and hope your nmot too long before you are back to Dancing 🙂 as you say its got to be Onwards and Upwards xxx
Andy :: Yes I think I know but am sure i wont lol, everyone is different with treatment I will take it as it comes, am going to move faster so its just my heels it nips at lol.
Onwards and Upwards xx
Ps you lot I hope I dont run out of ink with all this posting Lol xxx
Hi Tom,
I’m really really sorry to hear your bad news Tom. Its like living with a time bomb. You can never forget that one day it will rear its ugly head again. Last time it came back for me I was put on Bendamustine. It was certainly better for me than Velcade. I’m still suffering from the peripheral neuropathy I got from Velcade back in Sept 2010 to Dec 2010. They stopped the Velcade in Jan 2011 as my body couldn’t cope with it. I was switched to Revlamid at that time.
I hope whatever treatment you get works out well for you. Good job all these trials are coming along for us. Hopefully the new drugs will keep us going a while yet!!
Stay strong.
Scott
Hi Tom
Sorry to hear yeloma has come back but stay positive and hopefully you will have many more years in remission.
As you always say onwards and upwards.
Maureen
Hi Tom
I’m so sorry to hear your sad news. It must be such a shock, disappointment and big concern about what the next round of treatment will bring. Fortunately, there appears to be quite a few treatment options available for first remission including some clinical trials, Velcade and the possibility of a second SCT. Apparently the results of the Myeloma X trial are due to be published which shows the benefits of patients undergoing a second SCT as part of their first relapse treatment.
I’m following closely behind you Tom. I’ve just achieved over three years of remission, but with my light chains continuing to slowly rise to 880, my consultant wants a BMB early next year when my readings are predicted to reach 1000. I had expected to have started treatment earlier this year, but fortunately during the summer and autumn, I had a couple of readings when my light chains decreased which totally confused everyone. Even though my myeloma is returning, my body feels fine with no increased pain or fatigue. However my hot flushes have increased, which is what happened a few years prior to my diagnosis with myeloma. I thought I was going through a bad case of the menopause. Hubby has now got used to the windows being wide open in the bedroom during the winter months and he’s happier the heating bills are much lower as I keep turning down the thermostat! It’s a good job the regular blood tests are available to let us know what is happening within our bodies before any serious bone damage occurs.
I hope your next round of treatment is successful with minimal side effects. As you say, onwards and upwards.
All the best.
Love Jan W
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