[DaiCroParticipant]

Hi all… a quick update… honestly.;-)

Back into hospital for a flying visit but we packed a lot in. Admitted Sunday 20th, 12.30pm. Discharged 4pm Wednesday 23rd.:-)

Janet got me in after a quick rise in temperature throughout the morning… we did not know my temperature because I was too confused and out of it to use my thermometer and my ever sensible girl read the signs and made the call.8-)

I was admitted to the Specialist Receiving Unit, usually a quick assessment before being moved on to an appropriate ward but unfortunately there was no room at the inn at either of our two haematology wards and I was kept in the SRU for the duration. Initial vital signs showed a temperature of 39.2 an elevated pulse rate and a low blood pressure reading 90/52. 🙁

At least this time we had the cause nailed as I was coughing up a very dark coloured sputum from the upper respiratory infection from the cold I had carried for the past three weeks… you could say that I was a tad concerned… and you would be right, especially as I was due to sign up and start my new treatment on Tuesday afternoon.:-|

One thing I have to say, the medics and day shift nurses were superb, both in getting me started on treatments that turned all ailments around in 36 hours. I knew that I was very ill for a while and I owe as much to the friendly and supportive care as to the drugs administered. By Tuesday morning my Neuts had started to rise from 1.2 to 1.6 on their own accord, so the planned GCSF injections were postponed but my HGB was still at 8.0 so two bags of blood were ordered up by the head chef… one for that night and one for the next morning. By this point my pulse rate and my blood pressure were back to normal and my sputum was a healthy white… I stopped coughing altogether by Thursday evening. I had my last bag of blood at 9am Wednesday and was home by just short of 5pm. I was told that it was now just a matter of recovery and home was the best place for that process to happen. So, my first bout of Pneumonia, be it, luckily for me, ever so mild.8-)

An appointment was made for the following Monday for the sign up and hand over of IMNOVID, the Uk's name for Pomalyst (Pomalidomide).

Monday arrived, bloods taken; HGB 11.4 – Platelets 130 – Neuts 2.3. So all lights being green I signed up, collected my meds (well Janet did, with a normal hour's wait at the pharmacy but she didn't complain). I popped the pill at 10pm and we were on our way. I will have weekly bloods for the first cycle (three weeks on – one week off).

The only sting in the tale is the once weekly (started this morning) of 20 tablets (40mg, my biggest single hit to date) of our old pal Dex.;-)

That's me up to date… still in the game and hoping for a good and long relationship with my Imnovid.:-)

Dai.

[andygParticipant]

Good luck with the new treatment Dai.
Glad you caught your infection quickly and it was treated promptly and effectively.
I may join you on a new treatment shortly just got last weeks PPs they're up to 35 from 25 :-0 Hopefully that's a result of being on antibiotics for a week or the new anti fungal drug I was put on causing me to have some liver problems. They stopped the anti fungals ASAP! Time will tell.
I don't want to give up on Revlamid just yet – the longer I'm on it the more chance of the new drugs coming available but you of course know all that.
Just finished my Dex for this cycle Dai. I take 20 tablets (40mg) on days 1,2,3&4 of my cycle.

Every day is a gift.
And hopefully a day nearer a cure.

All the best Dai
Andy

[tomParticipant]

Hi Dai

Well ain't that young Lady of yours on the ball 😀 well Done Janet and the team that took over for a few short days.
Good luck with your new treatment my Friend.

Love to you both.

Tom onwards and upwards x

[mhnevillParticipant]

Hi Dai

I can hardly believe it, you are actually on a new drug at last!! 1000% for persevance. I do hope and pray it works the miracle for you that some folk across the Pond have reported. Good luck with the Dex.

Sorry about the pneumonia which is what we all worry about. Glad they got it under control so quickly.

Lots of love to you and Janet.

Mavis x

[VickiParticipant]

Hi Dai

Wishing you all the best with your new treatment…..good old ( well less if the old!) Janet for spotting the signs, old hand by now but none the less glad you are feeling better.

Keep,it up

Vicki and Colin 🙂

[DaiCroParticipant]

Thank you all for your messages of support, truly appreciated. 🙂

I had a call this morning from one of my lead nurses to says that a refferal has been made to our local District Nurse team to make regular calls to check on my 'Pressure Ulcers' (new posh name for bed sores) so that will be one less chore for Janet. The nurse will measure, clean and dress the ulcers and keep records. 😀

We haven't had any contact with our local team for over three years but they were very good to have on side. When I was in hospital last week I was given an air mattress which was excellent and I was told that there could be one made available for my home bed (made available by the District Nurse team… so hopefully)!8-)

I started my 40mg of Dex on Tuesday morning and I had my last heavy sweat early this morning, making a total of 18 change of tops in 48 hours… each one looking as if I had just pulled it out of the washing machine. My current top has been on (and still dry) since 11am, so there is my measure… I hope it improves as the weeks progress. 😉

The [b]Imnovid[/b] (Pomalidomide over here) seems to be quietly doing its job… hopefully having a go at the secondary tumour on my sternum. Velcade got rid of it first time round (Summer 2011) so I am hoping that Imnovid will do the same before getting stuck in to the KLC's. 😎

Life is interesting isn't it. 🙂

Dai.

[eveParticipant]

Hi Dai
Glad to hear you are coping and still have a sense of humour,my first thought was all that washing and drying,in this weather I do resort to the local laundrette ,it's usually on my way to the hospital then collect on return all done and folded for £9 a bargain.
District nurses on board!! All good news specially for Janet,let's hope a ripple mattress works,the cushions are good for travelling as well as sitting on to help with the pressure sores.

Looking at your last blood results they are looking good,so you must be very pleased,let us know how you get on with this trial,as you seem to be the only one on it at the moment ,on this forum.
Good luck .Eve

[sanParticipant]

Well Dai you certainly don't do things by half! so pleased that all is ok now and really wish you well with your new treatment, watching your journey with interest:-) San x

[JentayParticipant]

Hi Dai,
I shall follow your progress with interest as I am shortly to embark on the same treatment. After 36 rounds of Revlimid, the cancer is on the rise and my consultant has applied to the CDF for funding for Pomalidomide for me. I shall be the first person in my area to receive it so everyone is very excited, me included!
If it is half as effective as it's claimed to be, and gives me the same quality of life that I have enjoyed for almost three years while I've been on Revlimid, then I shall be more than happy.

Good luck with your treatment. May many more of us get the chance to use this new drug.
Jen

[bandityogaParticipant]

Hi Dai

Good to see you are making progress. I do not envy Janet with the washing in this weather. It has rained all week here but we have still managed to get out every day.

Ian had an air bed in hospital but still had to be turned every 2 hours to let his bed sore heal. Got a blow up mattress on his bed at home and on chair.

Keep up the good work.

Maureen x

[tomParticipant]

Hi Dai

Well pressure sores am sure they are not good.
Your doing well my friend and your young bride (Janet) is doing a sterling job keeping on top of your clothes change.

Keep up the good fight Dai

Love to you Both

Tom Onwards and Upwards xx

[Author]

Posts