[DaiCroParticipant]

Bendamustine… Cycle 1…

Has started. Consult at 10am… bloods first as usual, followed by the pre treatment consultation… which was running an hour late. The treatment in the Day Case Unit was booked in for 11.30 but the news filtered down that there were problems with the airflow in the pharmacy and that the pharmacy would be closed between 1pm and 2pm for ventilation repairs. If our Bendamustine was not made up by 1pm then there was the chance that it would not be presented for making up until at least 2pm and down on the Day Case by 3pm at the earliest.:-(

We sat and waited until 1pm and we finally got called through into the unit… to be told that they would cannulate me now in readiness for the Bendamustine whenever it arrived. They finally got me cannulated after heat pads and several people suggesting different sites (I am one of those notorious people with no visible veins). Several of the staff passed on the task to their colleagues after 'bigging them up' with flattery and finally Jesse accepted the challenge and got it first time.:-D

It was now 1.30pm and just as Jesse had finished his cannulation my Bendamustine arrived. Apparently one of the pharmacists had started the mix at 12.45 and insisted on finishing it before they cut the power. Saline – Bendamustine – Saline followed with no problems (excepting the nurse setting the flow for 30 minutes and was told by an eagle eyed colleague that the flow has now been slowed to an hours infusion due to the toxicity of the chemotherapy) well spotted and thank you! 🙂

We were finally let loose on the streets at 3.15pm. We walked through the waiting area and noted several people who had been there since 11.30am when we had arrived… such is the backlog at Xmas and the New Year because (we were told by a nurse) the hospital administrators refused to pay the overtime wages to open on Boxing Day and New Year's Day… she was dreading Wednesday and Thursday because of the backlog that was building up.:-(

We got home at 4.45pm and we settled down for a night of TV and films… waiting to see how. when and in what form the side-effects from the treatment would take. I was feeling weary from a long day and succumbed to the call of my bed by 8pm. The amount and timing of the new accompanying medication was a tad overwhelming but we final worked it out and a tick list made. Some of the medication is not to be taken until after my 2nd infusion next Monday… and we decided to follow the instructions on the bottles/packets rather than the sheet from the pharmacy which confused rather than helped… and everything looks easier and clearer by the light of day.:-D

I'm feeling weary and a little stiff and sore but nothing major to report so far (typing and touching wood at the same time). So here's hoping for a relatively trouble free course of treatment. My only concern is with the nightly 500mg of Thalidomide and its effect on my Peripheral Neuropathy… which hasn't got much room for expansion… if that stays trouble free then I will be truly grateful.8-)

Regards and a Happy New Year to all… 🙂

Dai.

[BADGERParticipant]

Well Dia

touching wood and fingers crossed this is the one, you are a surviver i am sure you will get through this you are an inspiration to us all

Big hugs Jo xx

[EvaParticipant]

Hi Dai,
Happy New Year to you and Janet.
I suppose this is a bad time of the year to go near a hospital. I was saying to my husband last night that having to go to Out Patients on New Year's Eve would have been 'interesting.'
I hope that you can do things that are enjoyable in spite of the chemo. I get dizzy from my Thal, fatigued and have some neuropathy.
Keep us informed about how the Bendamustine is affecting you.
Best,
Eva

[TrigletParticipant]

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

[tomParticipant]

Hi Dai
I hope you have a good run on this Dai, and Rosie seems to be doing ok on it 😀 .
Like all treatment it's a listen to your body and you Dai are a good listener 😎
Good luck with it Dai

Happy new year to you and Janet.

Tom Onwards and Upwards. X

[VickiParticipant]

Hi Dai and Janet, and you onwards and upwards Tom,

Firstly happy new year to you all 🙂

Good luck with this treatment Dai, you deserve it, especially after your battles with amongst other things, the c-diff!. You will do it!

Vicki and Colin x

[elaineParticipant]

Thanks for posting quite an upbeat account of your new treatment. Like you it appears that Revlimid has finished doing its magic for me after 15 untroubled months, and the spectre of " what next" has been keeping me awake most nights. It's good knowing that a new road in our journey isn't as dark as we sometimes imagine. Keep going Dai and everyone else who is travelling with us. Oh, and Happy New Year. 😎

[eveParticipant]

Hello Dai

It is nice to hear you are doing well,with this new treatment,I just want to wish you well and to let you know although Slim has moved to remission,you are never very far away from our thoughts,I know the last few months have been hard for you, I wish you a good 2013with not many hiccups. Love Eve and Slim

[scott9Participant]

Hello Dai, I've not looked on the site for a while. Its always reassuring to see your posts. Keep going old chum. You tell a great story. One question. What do you do about eating during the long visit to the hospital?

I'm due my next bash of bendamustine on Monday. Hopefully it will start to have some effect soon. This drug seems to be flavour of the month these days as lots of us are on it. I guess it must work. Either that or its cheap!

Happy New Year to you and anyone else reading this. Lets hope we all make it to next year!

Scott

[susannahParticipant]

Good Luck on the Bendamustine Dai

Love
Suex

[DaiCroParticipant]

Hi Badger, Eva, Vicki, Tom, Elaine, & Eve.

Thank you for your messages of support, they are truly appreciated. 😀

I will keep you in touch as the treatment commences, especially regarding the processes, procedures and side-effects… they may come in handy in the future, although I hope, truly and deeply that that need is a long, long way down the line. 😎

Much regards 🙂

Dai.

[DaiCroParticipant]

Hi Rosie,

[quote][i]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! [/i][/quote]

Hi Rosie,

Thank you for the report by way of first hand experiences. I had a slight feeling of nausea on Monday evening but not enough to make me take the tablets (although I do understand that they work better as a pre-emptive measure) but nothing at all since. 🙂

Janet went out to do some bank business, shopping and then onto our daughters for tea and a chat – an excuse to see our Grandchildren, Alfie 6 and Edith 4, as we haven't seen them over Xmas because Alfie had a dose of 'Proper Grown Up' Flu. It meant that she was out for 5 hours and I'm glad she had the chance to escape all things MM for a few hours… she has them again tomorrow, all day and their last official day of freedom, although they won't see it that way as both of them love school. 🙂

She will have them from 8 am to 6 pm… at their house (usually ours) because we don't want to take any chances regarding any lingering 'Flu' germs, although the rest of the family escaped it as far as I know and I am aware the danger period is during incubation and the first few days but Janet is determined to ensure that I stay germ free until after my 2nd infusion at the very least. :-0

As for the fatigue and weariness, I thought I was doing well until I got up. I was watching a film on iPlayer via my Mac, which resides on my over-bed table, so I got up an hour or so after Janet had left. Ablutions, getting dressed, making a cup of tea and getting settled down in the living room absolutely did for me. I started sweating profusely (did I mention that I chose Thursdays as my '[i]Dex Day tm[/i]') felt breathless and I did a fair impression of a damp piece of lettuce. It took two changes of tops, that cup of tea and a dose of 'Bargain Hunt' before I felt fully recovered (by lying back and doing little to no physical activity standard of recovery). So a lesson learned… 'Do all gently and very slowly', starting tomorrow, after breakfast, 7.30am latest as Janet sets off to the 'Mamgu Party Day' at that time. (We are known by our Grandchildren as 'Mamgu & Tadcu' – Welsh equivalent of Grandma & Granddad, the 'u' pronounced as 'ee' and the 'c' in Tadcu the same way as kicking 'K' – 'g' feminine & 'c' masculine… such are the vagaries of my mother tongue). 😎

Funnily enough, the reason I was bounding about today was due to feeling far less stiff and achy, especially across my bad and shoulders of which were fine pre-'Bendamustine' but ached quite a lot through Tuesday and Wednesday. I seem okay now though, touch wood. 😀

One of my Nurses, Jesse, won the Day-Case lottery to 'find a vein and did it first time… but has left a fine 1.5 inch square bruise which needs to clear up by next Monday if they want to use the same place or the same hand (always my left). By the look of it, touch and go, which will make things interesting. 😀 I've been periodically warming my right hand up by means of a microwaved hot bean bag and tapping for veins like Billy-O, with one distinct possibility – but they will have to semi-roast my right hand and tap bloody hard to get it because it disappears completely under normal conditions. 😛 😉

Thanks again for your 'B' experiences. 🙂

Dai.

[DaiCroParticipant]

Hi Scott,

I too will be enduring the joys of Bendamustine on Monday next… I shall think of you as they struggle to find a vein. 😉

We have a free drinks and sandwiches trolley which makes its rounds of the Day Case Unit between 12 and 2 PM – so that, literally, caters for the eating problem. 😎 The same trolley glides around dispensing hot & cold drinks and a nice variety of biscuits from 10 to 11am and 2 'till 4pm to ensure we don't fade away. 🙂

Happy New Year to you and yours Scott… and I hope we both feel and realise the benefits of this treatment. 😎

Dai.

[KeithH17Participant]

I had my 2nd cycle of Bendamustine Thurs/Fri just before New Year and since then I can't say I am firing on all cylinders. I am having blood tests twice weekly which is killing my Veins I've also had two blood transfusions and two platelet transfusions in the last two weeks. I feel very tired and have had very bad abdominal pain. My Hb and platelet counts are rock bottom and now my Neuts have falling back to 0.8 neutropenic once again. It seems that every time I go back onto treatment my neuts fall back into the danger zone I then pick up another infection and the whole horrid cycle starts all over again. Because of this I can't make any plans as I'm in and out of hospital every single week and as for a holiday……don't even give it a thought. I'm in again tomorrow Monday for a blood test and pending on the result I'll see if I need another transfusion. I feel like the guy in the Eiger Sanction who lives in a dark room permanently connected to a blood transfusion machine LOL. I just want a little respite from all of this and no I'm not feeling sorry for myself just sick of the whole sorry business. I must be coming to a watershed after 5yrs fighting this thing and like everyone else it's the infections that get you and not the MM. The one good thing to say is we have a brilliant nursing team which helps to get me and many others through all of this and are a joy to be around.

Dai how are you doing with the bendamustine and you too Scott?
Hope you are both well.

Happy New Year and good health to all.

Keith.

[VickiParticipant]

Keith

You sound like you are having a tough time……keep your chin up, you can do it. This mm thing must be beaten and you are jst the man for the job. Easy for me to say when you are feeling so rubbish 🙂

All the best

Vicki and Colin x

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