Hi Angela,
I received a letter recently from Manchester Royal with an itinerary of dates leading up to my SCT. I'm in for Bone Marrow Biopsy, Consent and Medical Review on 4th December and then back on the 30th December for Virology Blood Test. I'm then in for Cyclo Chemo 6th January, Blood Test on 13th January and then Stem Cell collection between 14th – 16th January.
I'm unsure though at the moment if this happens has an outpatient and then I go into Hospital or if it's part of the Hospital treatment. The way the letter reads it lists dates and times to be at the Day Unit, so I'm assuming I maybe stay in once they have collected my Stem Cells. I need to clarify with them when I return on the 4th December.
i know Dr Gibbs was trying to get me in before Xmas however they were struggling for time to fit it all in so it looks like I'll get a break from the the Meds over Xmas and straight back into treatment in the New Year.
My back is much better now and although far from 100% it's a world away from the pain I experienced at first. I still sleep slightly upright with my legs slightly raised which I find most comfortable however I have slept upstairs on occasion in our bed. However because I'm lie flatter this way my back does tend to ache a little. I'm trying to ease myself lower each week in my adjustable bed to the point where I'm nearly flat and hopefully then in a few weeks I'll be back in bed.
Hope everything goes well for Graham with his SCT.
Best wishes
Scott
Hi Jean,
Thanks for the reply. I think it differs from person to person and you and Frank have been ok with it which is great. Michelle seems to have been ill with it during her treatment on CTD so just in case, I'm going to wait until my CTD is finished and book myself in to have in early December. Hopefully then subsequent annual flu jabs won't be as bad.
Cheers
Scott
Hi Michelle,
I am halfway through my 4th cycle of CTD at the moment. I have been lucky so far and not really suffered any major side effects from the treatment however this last couple of days I have felt ill and have been physically sick too for the first time since I started treatment.
My Wife and I are booked in with the GP for Friday morning however I don't fancy making myself much worse at the moment although I know really I should have it.
I think I'll wait. My 4th cycle finishes at the end of the month and then I won't have any Chemo in December and then I'll receive the high dose chemo in Hospital when I have my SCT in January.
My Wife will go tommorow as planned and I think I'll book myself in with the GP during December when I have finished my CTD and hopefully I won't be too bad.
Thanks
Scott
Darren,
Good luck mate.
I know its tough and it hit me hard at first although as others have said once you know of your situation then you should be able to come to terms with it.
There are lots of positive stories to take inspiration from such as Debs above and life does go on.
Try and stay away from the general info on the internet about Myeloma because there is a lot of old, misinformation and you will scare yourself as I did at first. Use a site like this for the info you need and take it one step at a time.
All the best.
Scott;-)
Hi Jill,
I have not been here too long and I'm a bit of a novice however my Light Chains (Lambda) were 1513 when diagnosed. I'm assuming they caught mine early however I think that's more to do to do with my circumstances of collapsing with terrible back pain whilst being abroad and subjected to lots of tests in a private clinic before being airlifted home. I think all that ground work done in the Menorcan Clinic helped the Docs easily identify my diagnosis when I got back home.
Anyway, as I said mine were 1513. I was randomised for CTD and mine dropped to 26 within 18 days. They then dropped to 16.5 and the last time I went to the Hospital (1st Nov) they were basically Zero so I have had a great response after 3 cycles. I'm having a fourth cycle now in preparation for a Stem Cell Transplant in early January. However as some of the guys have said I have seen some high levels but it can be dealt with it may just take longer sometimes and you may need more cycles to bring it down.
I think this will be a common theme however I was advised to drink lots of water each day (especially because I had to stop taking Allopurinol because of a terrible rash I got on my trunk). I choose to drink filtered water and have a small Brita Tank in the Fridge. I usually drink between 3 & 4 litres per day (although I am never away from the toilet) but this flushes the Kidneys etc so for me its worth it.
Stay Strong and all the Best.
Scott;-)
Hi Babs,
Nice one. I'm glad your doing so well and you have been on your travels. Stories like yours are really uplifting and are good for the site and the forum.
Keep us updated on your future adventures!
All the best.
Scott:-)
Hi Jo,
I have struggled with this also on the Dex, especially at first. I have not been diagnosed too long and I'm a week into my 4th Cycle of CTD. Sometimes I find myself staring out of the window, feeling really sorry for myself and feeling weepy and there's nothing wrong with that.
Make allowances for that, remember that although its difficult you will usually have more good days than bad and remember its the meds that are taking effect.
Its got easier for me as I have gone along however I still get down days sometimes not just on the come down off the Dex either. It effects me more when I'm tired so I have to discipline myself to go to bed early and the difference it makes is huge the following day.
Try to keep positive. I take each day as it comes, try and stay away from negativity (without burying your head too much in the sand) and your mind-sets should change as you go along and you get to come to terms (although its difficult, I know) of the Illness.
I try and envisage the time a cure will be found and we will all be treated. Some may look upon this as being unrealistic however it helps me…so do whatever helps you best to get through it.
Keep Strong, you'll find a way.
Kind Regards
Scott
Hi Illona,
Welcome to the site and I only wish it was for some other reason instead of your Dads Illness. I too have not been diagnosed that long however I have found there to be some great and knowledgable people here on the forum who all tend to help out with info at the drop of a hat.
dick B makes some good points about testing and GP's and there misdiagnosis. There should be testing carried out to try and determine earlier a proper diagnosis and if you watch Myeloma TV one of the Consultants mentions that they are trying to educate GP's with more information when diagnosing via 'intensive pathways'…let's hope this happens soon so people can get treatment early if diagnosed.
I was told by 3 x different doctors I simply had a muscle strain in my back. One even said it was because I had a weak core and I need to exercise it more! Fair play, I could do with a stronger core however without whinging too much on each occasion it took 10 mins to come to the conclusion that it was a pulled muscle before they kicked me out of the door with the instructions "take paracetamol and ibuprofen and it should improve".
In general though I think GP's do a good job in difficult circumstances and I am an avid supporter of the NHS.
I too am on the Myeloma XI Trial however was randomised for CDT and on the TEAMM Trial for Antibiotics or Placebo (don't know which one for obvious reasons) for the first 12 weeks of treatment to see if it helps. I record my temps etc each day in a patient diary and return to the clinic at Manchester Royal Infirmary where I am receiving my treatment when requested.
Also Carol Symons is spot on with her outlook in my opinion. I see it the same way, ok it's not curable…yet however it is manageable and people can live for many years in remission. With my limited experience the info I have sought tells me that they are making great strides in the treatment and you never know a cure may just be around the corner! Either way any step towards a better quality of life, whether it be through new drugs with low toxicity or anything else that helps Myeloma sufferers can only be a good thing for us and the Consultants, Specialist Nurses and their teams work really hard to make these things happen every day.
Be strong, remain positive for your Dad and Mum…they'll need your support which it seems you are already providing in droves. I'm sure your has Dad had been in some close scrapes during his Army Career and although he has retired now I'll bet he still has a 'Bulldog Fighting Spirit' which was instilled into him during his time in the British Army (and without sounding too jingoistic, in my opinion is the best trained army in the world) I would also wager that because of his experiences he has the correct mindset and attitude to deal with it…once the initial shock is over. It does get easier, trust me I have just been through the shock phase myself but I'm not gonna lie down and roll over, no way. I'm a soldier (figuratively speaking) fighting the evil forces of Myeloma!
Anyway that's enough from me I,m sorry I can't offer any proper advice on treatments etc, I have not been around long enough to offer advice as such yet because it's so early for me. I'll leave that to the experts on here such as the folks above who are very knowledgable.
All the best and give my regards to your Dad.
Scott;-)
Megan,
Thanks for the reply. It sounds like your Hubby had it bad and is still struggling now. It's awful when you can't move for fear of a spasm. The first time I had one I felt like I had been shot with an electric bolt!
I know early on (a couple of days after the 1st spasm) it took me about an hour to try and get out of bed. It was horrendous and I couldn't move for the fear of it going again. I eventually dragged myself out inch by inch on my stomach backwards trying to keep my back straight.
I feel tons better now and it actually been about 52 days since I collapsed on holiday and taken into the Menorcan Clinic so within that time and with the treatment I'm having it's easing. However I still fear of bending forward too far and especially twisting. I'm not sure if I'll ever be 100% again.
I'll keep pushing on and see how I get on.
I hope you and Phil are well.
Thanks
Scott:-)
Lindylou,
Thanks. Yes, I'm trying to remain upbeat and count my blessings when things are going well. I have had a rough time of it however I'm sure that there are many others also who have had similar experiences. I know I'm not alone in the way it's been for me and it affects everyone differently but I know pain is one common feature that we all deal with.
I won't lie down and be 'beat up' by the illness because that's not me. I'll stand up, take it on and see where we go. That's the only way I know how to deal with it.
Hopefully it will be enough for now and I'll worry about the rest again.
All the best.
Scott;-)
Antar,
Yes, we use the 'Give as you live' website as a portal for our online shopping (where we can). However something's such as groceries (from Tesco for instance) don't count (which is a shame). This would really add up with our online weekly shop.
Once you have registered then 'signing into' your account via the 'Give as you Live' website and then searching for the shop or item you want to purchase will re direct you. Once complete then you will receive confirmation on the saving and your account gets updated regularly with a total raised.
If I'm honest we have not raised a fortune (some retailers are more generous than others) however as San says every little helps and if it's for Myeloma UK then it's got to be worth it!
it's a good idea and we are trying to encourage others to use it where they can and if they feel comfortable.
All the best.
Scott;-)
Dear All,
I had my first full infusion of Zometa last week ( however I did have a small dose before I initially left hospital to come home about a moth ago).
But this time it was the full 'hit' in clinic. The day after I was a bit rough. I had headache and a higher temp bordering on 38.0 Celsius and a bit 'spaced out and listless' until dinner time. My Blood Pressure was normal however my pulse rate was up at 110 (which is much higher) than it it normally is. I was a bit alarmed and my wife wanted me to ring the Hospital however I didn't want to start a panic so I took my painkillers as usual and had something to eat and by the afternoon I was ok.
My temp came down and my heart rate settled down and I felt much better.
I am glad I found this post because I will monitor how I am next time I have it. An interesting point though is, does the speed of the infusion affect the possible side effects? The small dose I had initially before I had before I left hospital seemed to take much longer than the 'full hit' I just received last week in clinic.
Thanks for the info guys. Keep it coming 🙂
Hi Guys,
Just a quick update on my back pain. It's much better and I'm much more more mobile now however still no where near perfect! I even managed to walk into Christies yesterday (I have used a wheelchair up to this point) for any long walks around the hospital so that's an achievement in itself!
I went to see the Radiologist to see if Radiotherapy may help treat certain areas and speed up the healing process. He looked at the scans and said that I had problems throughout the spine however there was no specific place that would benefit greatly or need it which wouldn't involve destroying some healthy bone marrow at the same time so it's best to leave it as is.
He also seems to think that the treatment must be working because the pain is reducing and the mobility is coming back. Fingers crossed eh!
All in all I was quite pleased that I didn't require any further treatment and glad to be showing signs of improvement.
Speak soon.
Scott 🙂
Hi Steph,
I am knew to the Chemo and have just started my second cycle of CDT. I too found that the Dex gives me hiccups on the two 4 day stints that I am taking on my 21 day cycle.
It makes me a bit 'hyper' and ramble a lot. I'm not sure if that's one of the reasons that I get the hiccups. it was quite bad at first (every day) however this last stint of Dex ( finished 1st lot of two for this cycle yesterday) as not been as bad.
Good advice on the Anti Sickness pills though from Dave. I'm going to try that next time. I was prescribed Domperidome (hope that's how you spell it) I only know it reminds me of the the Champagne (wish I could have that instead)! from the Hospital (MRI). however I have hardly took it because I have not needed it. I have only taken it the day before I have my Cyclo on days 1, 8 & 15. otherwise luckily I have not needed it. But as Dave said if it works then it's worth a bash.
Hope your Dad improves soon and thanks Dave for the tip!
Kind Regards
Scott 🙂
Hi Kay,
I'm still all very knew to this having only just been diagnosed about a month ago so I do more watching and reading than offering any actual advice because I don't have the experience as such of yet.
That said, sorry to hear you have to join us but I'm glad your here. The people are great and the replies I had from my initial posts really help and keep your spirits up!
I even met Wendy Duffield in Clinic recently. She recognised me from my photo, came over and introduced herself and we had a good chat for a while until I whisked away to see the Doctor!
From my limited experience it seems that there a 'good bunch' on the Under 50's Forum so you'll be in safe hands and given both advice, help and straight answers if req'd to questions you may have.
kind Regards
Scott 🙂