Dear Dai
I absolutely agree with you. Why didn't they offer you the GCSF injections to boost your neuts? Apart from the patient in the waiting room whom you met and is also on Bendamustine, you can add my name to the list as well. I was admitted in late February with a high temperature and low neuts . I had finished the treatment with Bendamustine in December as it had stopped working for me, but whilst I was in hospital in February. GCSF injections were the way treatment was going to go. Fortunately my neuts recovered on their own and it wasn't necessary – but it was certainly mentioned!
Good luck
Rosie x
Dear All
Haven't posted for a while so a bit of recent history – I'll try to keep it short. I finished a course of treatment in December,after I relapsed after 5 years post SCT. My pp's had levelled off around October and the Prof didn't think the treatment would do much more for me. He was right. since finishing the course with my pp's at 18 in December (half what they were when I started !) they had risen to 20 in January (was it a blip?. In February I was admitted our local hospital with a spurious infection and low neutrophils for which no cause was found. But it was noted that the said pp's were now at 24!!! What??? I felt I was having a Dai moment i.e. ok so long as I am on some sort of treatment, (sorry Dai). Having relapsed twice now in rather rapid succession I was worried to say the least.
Crumbs this is getting long winded.
Well it was decided that Velcade was the answer this time, and what I really want to say is, how great is this site?!! I had my first dose of Velcade yesterday, and my first ever infusion of Zometa. Today I've felt really good, then a couple of hours ago a temperature developed 37.8 plus achey pains in my legs/ribs, distinctly fluey. So onto the website and consult my friends, to see if any one else etc etc etc. And there you are; Bless you! I really think it's a case of Zometa flu I have. Obviously I will keep a check on my temperature that it doesn't go too high but shall resist the urge to get to the hospital immediately, specially as the weekend looms.
Andy, my prof has the same opinions of Zometa as has been explained to you by your medical team. Also, so very glad to hear of your latest results – keep posting such smashing news!
Love and a big thank you to everyone
Stay well
Rosie x
Dear Dia
I have just finished taking part in a National Bendamustine Trial so I thought I'd let you know how I got on.
I have to say that the main side effect for me was how tired and weary it made me feel. A bit of nausea but nothing that the tabs couldn't sort, No sickness,but I did have to reduce the dose of Thalidomide as that did cause me more face/lips tingling and 'clumsy fingers'. I had the same during CDT so I don't associate that with taking Bendamustine. I've also developed, what to me, feels like muscular pains in my back – which I never had before commencing the treatment. A CT scan revealed two more lesions which will have to be sorted – but they are not in the areas where I feel the pain, weird or what?
I too, am like you with no veins to speak of, but the staff at Kings are experts and got one easily every time. My first infusion also took an hour but the following ones only 30 mins, so….. you might have a nice surprise next time!
We had some very long days with the journey to hospital, waiting for the chemo to be made up, infusion, and then the drive home. Some times – especially on 'Day 1's', we could be away from home for 12 hours!!. We [u]both[/u] felt worn out the next day.
Just listen to your body Dia, and rest up when you have to (like always eh?). I do hope you are trouble free on your journey with Bendamustine, you deserve it!
Wishing you both, and everybody a very Healthy New Year – 'cos if we stay healthy we are all HAPPY!
Take care
Rosie
Hi Mavis
I'm sorry to hear about your 'difficulties' at the moment. There is nothing worse than constipation except from [i]pain[/i], in my estimation. The first makes you feel wretched, do and the second can drive you out of your mind.
Please, please, whatever you do don't give up your pain killer/s without first discussing it with your Drs/Nurse. They will advise you and adjust any dosage so that you remain pain free. If you just leave it off, it could result in you having to cope with pain [i]and[/i] the constipation. Constant pain is very waring and will bring anyone down very quickly. None of us needs or wants that. Take a tip from a fool and keep pain free, then begin to sort any other problems out.
There are a lot of over the counter remedies that can help, I'm thinking Senna tablets as a first stop. Also I make sure that I include a heaped teaspoonful of All Bran on my cereal every day ( no need to eat bucketloads of the stuff) I find that is good. Plus if you can, drink fresh orange juice (Tropicana) during the day now and again. Of course, lots of water too.
Exercise is good but if you can't get around much, then chair exercises may help. Your McMillan nurse should be able to guide you. If you can stand, then just do that for a few seconds every hour or so, and if you can manage to totter round the room so much the better.
But please keep yourself pain free, or else you will not be able to concentrate on anything and feel even less like trying.
Kindest Regards
Stay Well
Rosie x
Hi Scott
I'm down for 6 cycles – each one being 28 days. I have chemo on days 1 and 8. I'll finish just in time for Christmas!!(sorry about the c word so soon)
You're so right, each one of us is different and so our reactions to the treatments will be a bit different too.
Stay well
Rosie x
Sorry Scott, it's either me and fat finger syndrome or there's a gremlin in my pc…..! Where was I? Oh yeah, I feel now (cycle 2) the way I felt at the end of my CDT (cycle 6) i.e.weak++. Probably just me we are all different. I have a very dry mouth and have been told I could experience odd bruising as platelets tumble somewhat. Apparently it is doing its' job and my light chains have already crashed and my pp's coming down well ( sorry don't have any figures at the moment ) My medics say that Bendamustine is becoming to be seen as a well tolerated regime, so I wish you well with it and hope it does the business for you. It is interesting that you have been offered it as a treatment whilst it is still being trialled, maybe the medics know something we don't eh?
Now where's that post button
Stay well
Rosie xx
Hi Scott
I am on the MUK1 Bendamustine trial but as I'm only on cycle 2 there is not a lot I can tell you as I'm still getting to grips with it. My medics told me that they are getting lots of good reports on it's performance in hammering the pp's and light chains – let's hope so! To be honest I feel like I've been hammered myself, but I am 5 yrs older than when I last had any chemo, so par for the course I guess.
I get very shaky coming off Dex and tingly feet, lips and mouth with the Thalidomide. I had both of these with my firstline treatment so they weren't a surprise. I've had a little bit of nausea after the chemo but no sickness and the tablets sort that out. I do feel quite weak though. I feel now, the way I fe
Hi Tom
Don't know how I've missed this joyous thread!!! (I'm getting lost and missing posts…guess I'm truly an old woman!)
Well done you two, trust you are still celebrating your double whammy plus had a good time with the grandchildren. They really give you a lift don't they – my energy seems to rush back when I see them so they are good medicine for me. By the way, my youngest (the only lad) has a great name….Tom!!
Love to you both
Rosie
xx
Hello Helen and Mavis
Sorry to lump a reply in this way, but after reading Helens' post, lost where I'd read yours Mavis….. sign of the times!
But I wanted to say that I know how you must be feeling. I agree with both of you as I had Shingles 2 years ago which came along with a gastrointestinal 'bug' which was not identified. I was in hospital for a week and have never in my life felt so low (including SCT)! So I was thankful to get out at last. It left me very shaken and feeling scared that there might be another one coming to get me again whilst I was weak.
Give it a couple of weeks ladies and you should be back to feeling a lot better. Helen, I love your new photo your hair colour really suits you. I noticed days ago and I'm sorry I've not told you before now.
Keep smiling
Rosie
xx
Lovely news Dai – so good to hear that you both have enjoyed the Jubilee weekend and what a way to remember it! It gives you such a lift to be almost normal again doesn't it. Positivity in action. Well done Dai and Janet.
Kindest regards
Rosie
xx
Hi Andy
Just caught your latest post -'blood letting and result getting', love it, it did make me smile:-D
I can only endorse what David said about keeping going, and am so pleased for you that your pp's are heading south at last. R&D sounds just the ticket for you, same as it is for Dai.
Enjoy your break and stay well
Rosie xx
Hello Dai
It's always good to read your posts. I too shed a tear reading your words, but for me it's your absolute honesty and gift of sharing your everyday feelings that means so much, so thank you.
The reply you sent Gail on the 17th was another one that had me crying – but in a good way. It was so, so true and very uplifting, Yep – crying and singing, sure do help!
Best of luck with your 2 best friends (R&D), may they continue to support you for a long time yet.
Kind regards, best wishes to Janet and thanks again.
Rosie
Hi Andy
Great news re bloods, keep it up! Just don't start dragging your knuckles on the ground through eating too many bananas.
Don't know why we can't have Entinox (?sp)….Gas and Air) for the horrid BMBs'. My last one was the best so far, the lovely lass kinda rocked my hip as she was doing it, and kept telling me to 'breathe away'. Talk about hippy hippy shake (you won't remember that song!) It did the trick and didn't [i]seem [/i]so painful. I hope yours goes ok on Tuesday and gives the result you want.:-D
Stay well
Love Rosie xx
Hi Gail
Just read your last post and had to let you know how much I'm feeling for you right now. I have had mm for nearly 6 years now and remember so clearly how frightened I was in the beginning. My lovely hubby was – and is – always there for me. We cried together a lot about this wretched disease that threatened to bring our lovely life to an end.
Apart from drugs, I'm sure that Howard is extremely frightened and bewildered by it all, as we all are, but, (I'm guessing), being a guy,and a 'protective husband' is not much use at telling you. He has to get his head around it and work it out for himself. That is easier to say than do, believe me, I still have 'dodgy, self doubting days, and I'm not on any nasty meds at the moment.
Be easy on yourself and have a good rest at your daughters', get to the Drs and explain things. Also, you might like to consider having a Macmillan nurse, your GP could arrange that. They really are a godsend, and will help you and Howard with any worry you might have. When I was taking the dreaded Dex, my Macmillan nurse suggested taking them with a spoonful of yoghurt. Simple thing like that but certainly was better than taking a glug of water every time! Sorry if you've already been told that.
With kindest regards – it will get easier, honest.
Rosie x
Hi Wendy, Thank you for replying, it's so kind of you, and it really does help.
I don't mind telling you my age – I'm 65 and I think you're absolutely right in what you say about age vs treatment options. When I had my SCT the upper age limit was lower, and as I have passed that, I just didn't consider it would be feasible this time around. I am going to ask projected outcomes as you suggest. I feel very lucky to have had so long post SCT, albeit 2 yrs with a maintainence regime of Thalidomide daily, I obviously want to achieve as much as possible this time.
I think we all dread the next check up and blood test,you are not alone – fear of the unknown I guess, and then so pleased when it's all over. Talk about adrenaline rushes. I'm glad that you seem to be doing good so far, and wish you well as you continue.
Thanks again
Rosie xx