[TinaParticipant]

Hi Dai,

Your story brings memories of the many number of times Patrick was admitted with high temps, he was needle phobic and was, so the nursing staff say, thier worst nightmare to cannulise. I would suggest, if you are in a situation where you need regular cannulas to ask for a PICC line. Unfortunately Patrick had his only a week before he died but it saves so much pain and anguish and I really wish it had been done before.

PS Spike is one of my favourites…….I like the line where he was asked " what are you doing here?" and he replied "well everyone's got to be somewhere"

Tina

[TinaParticipant]

Dear Joanna,

Very sorry to hear Bendamustine did not work for you. It's interesting to see how treatments differ so much across the board. Patrick was not using either thalidomide or dex during his Bendamustine treatment, probably why he didn't suffer with side effects – and maybe why the treatment worked for him for 9 months, who knows?
The very best of luck with your next treatment, I will be keeping my fingers crossed for you.
Tina

[TinaParticipant]

Hi All,

I was so worried about Gaye I contacted Barts Hospital to see If I could get the heads up. Gaye was not an in patient and there was no record of anything untoward happening to a person of that name in the past weeks. I hope this means that Gaye is still hanging in there and is just too tired to come on line.

Tina

[TinaParticipant]

Hi Susannah,

I am so sorry that Michael had to come of Revlimid and you are now having to make this decision. Yes, as you know Patrick took this road which gave him another 9 months of virtually side-effect free life. I do not recall that he was taking thalidomide or dex along with it? Just at it did with Revlimid Patrick's platelets went down along with neutrophils (which actually never recovered after Revlimid). The one cycle of Pomalidomide had a very similar effect also.

Good luck with whatever road you take.

Love Tina

[TinaParticipant]

Hi Angelina,

I am practically minded too and I started planning with Patrick before he passed away in May. I also collected all my favourite pictures and put them in an album which is now helping me with the story of our life together. You may not have the physical or mental energy when John is no longer with you therefore in my opinion it is a good idea not too wait.

Sending you strength and love

Tina X

[TinaParticipant]

Gaye,

I too have been thinking about you as I know your journey has been very similar to Patrick's. Please let us know if there is anything at all we can do for you.

Love Tina X

[TinaParticipant]

Dear Min,

Please take heart, Patrick had great success from Bendamustine by this I mean it gave him almost a year of virtually side-effect free life. He too had very little success with velcade and revlimid and only eight months remission after his SCT. I do not understand why Bendamustine it is not used more widely.

I can understand how your news must be dragging you downbut there really is hope with this option and it will not be your last.

Tina X

[TinaParticipant]

Oh Susan,

I only just posted the loss of my husband Patrick who died this Friday gone and am so sad to hear of your loss also. I hope you are recieving plenty of support and I am sure you are so proud of Kevin and miss his terribly.
Best Wishes
Tina

[TinaParticipant]

Hi Kath,

Yes, both Gaye and my husband Patrick are currently using Pomalidomide. Patrick too was allowed it under special circumstances and has recently finished his first cycle. If you have read any of my past posts you will see that Patrick had a successful year on Bendamustine, which is not a new drug, without side effects, before it stopped being effective.(Revlimid was only effective for approx four months) Bendamustine is given intravenously taking about half an hour each time.
Good luck

Tina

[TinaParticipant]

Hi Debbie,

Interesting to see how the effects of Rev and Dex differ for each patient. Patrick used to take them both in the evening which did not affect his sleep, if he took them in the morning he would be sleepy all day. Hope you get on well with the Rev.

He has just completed the first cycle of Pomalidomide & has suffered very badly with painful night cramps and like you Gaye has been sleepy too.

Tina

[TinaParticipant]

Thankyou Gaye,
With regard to the low neutrophil count, Patrick has had extremely low counts for over a year now. Mostly the count is 0.5 but has dropped down on occasion hence the number of stays in hospital last year with neutropaenic sepsis.Similar to you Patrick has a low platelet count too.
He is also suffering with more pain this time in his sternum and the ribs across the chest, he had an MRI last Friday and we await to hear the final results this week – hopefully something positive can be done e.g.radiotherapy or another vertebroplasty.
Thankyou for your kind wishes, look after yourself

Love Tina x

[TinaParticipant]

Hi Jo,
Yes, Patrick was on Bendamustine with Thalidomide for almost a year with very good results. The only drawback was that the Bendamustine appeared to knock back both his platelet and red cell count, I will say however that this was also a similar scenario with Revlimid previously.Patrick did have to take anti-sickness tabs before and on the day of the bendamustine infusion in the very begining. Hopefully the combination will work for you for just as long.
Oh Gaye, if it's not one thing i's another! I know it is early days yet but how are you tolerating the Pomalidomide?
Bridget, you know, Patrick is the most single-minded focused person I have ever met and he and I have been a great team for 34yrs. He has been attending hospital up to three times a week recently but when he is not there he still manages to get up at 4.30am fighting through the pain and goes to work. What can I do with him??

Love to all
Tina

[TinaParticipant]

Hi Gaye,

So sorry to hear you are in so much pain, I guess you must be taking MST? Patrick uses Oromorph for the breakthrough pain which doesn't appear to have any detrimental side effects.
Hopefully the MRI will identify the cause of the increase in pain and something positive can be done. How is your calcium level? Patrick always experiences extra pain when it rises.
Good luck on Thursday

Love Tina

[TinaParticipant]

Dear Gaye,

Very happy to hear you were granted use of the Pomalidomide. Ad=fter one year of partial remission on Bendamustine the devil within has again raised it's ugly head. As you know Patrick is in the same boat as yourself and will be starting Pomalidomide in the next few weeks. His paraprotein and calcium levels have taken a dramatic rise over the past week and he also has had an increase in pain.He survived swine flu over Christmas and was doing well until this bolt out of the blue. Good luck to you with the Pomalidomide and I hope your pain improves very soon.
Love Tina

[TinaParticipant]

Hi Amelie,

Great news that John is in remission – enjoy every minute.
Patrick was admitted to hospital at 2am Christmas morning with a temp of 39 deg, preceding this he had be suffering with a hacking cough but no other symptoms.The hospital was amazed that he had not been given Tamiflu tablets, the "inoculation" for swine flu and they gave them to him there and then, Patrick was very poorly & on IV antibiotics for four days, once discharged his cough has continued but is improving. When visiting the consultant last Thursday it was confirmed that he had actually contracted swine flu!
In my humble opinion I would make sure John gets the Tamiflu meds and has the flu jab as well as yourself. I expect John's neutrophils have now risen to a "normal" level but I certainly would still take all the precautions available.

Regards

Tina

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