[brochoParticipant]

Hi everyone just a little update on my Bendamustine treatment , it may be useful for someone ! Tomorrow I will have my third dose of Bendamustine it hasnt been too bad so far The worst thing is feeling terrible the day after, I have been sick and had an awful headache on both weeks despite taking Domperidone for the sickness. Once Saturday is out of the way though I havent felt bad at all My red and white blood counts have remained good but the neutrophil levels have dropped and are borderline so I may need GCSF injections to bring them back up Thalidomide is causing me more of a problem as I am so tired all the time , an afternoon nap is essential at the moment ! I imagine the levels may drop futher after a couple of cycles though. So if things stay like this and Bendamustine works I will be happy to take it long term I have surprised myself by doiing my own injections , it often doesnt hurt at all when I do it !Mind you its a good job I have a large belly if I have to have GSCF injections too Haha Everything happens for a reason even steroid bellies!! Hope you are all as well as you can be love Bridget x

[eveParticipant]

Hi Bridget
Good to see you posting,and glad to hear not many side effects from Bendamustine.Sue,s husband who is on it,is not bringing PP down,but again not going up.
As for the apology about inhalers I do not expect one,this is what this site is about information and discussion and we women can talk talk and talk.Eve

[BADGERParticipant]

Hi Bridget

so glad you are manageing the treatment what sort of dose are you on for the thalidomide I found when on that and dex it was the only way to get a good sleep I say my prayers for you that this works and gives a you a long relief you certainly deserve it

Lots of love Jo x 🙂

[TinaParticipant]

Hi Bridget,

Good to hear thay you are not suffering too many side effects from the Bendamustine. I do recall Patrick taking anti sickness pills an hour before the injection which seemed to work for him, the low neutrophil counts seems par for the course for this treatment so watch out for any signs of infection.
Best of Luck
Tina X

[susannahParticipant]

Hi Bridget

So pleased you are not having to many side effects from the Bendamustine, since Michael came off Thalidomide he hasnt felt quite as tired. Hes having more problems with the Bendamustine, hospital today no treatment hes nutropenic and his platelets are very low, so back again next Friday (hes having GCSF injections again)Hopefully if his PPs have remained the same he will still be able to have it, bloods permitting.

Love
Sue x

[GillParticipant]

Hi Bridget,

Glad you feeel a little better and that bendamustine seems to be helping. It seems (thank goodness) that there is always something around the corner to help.

Maybe not quickly enough for everybody but still, treatmeent is moving PDQ

Love from Gillxxx

[HelenParticipant]

Hi Bridget
Hope the sickness is settling for you, well done with the injections.
Helen

[mhnevillParticipant]

Hi Bridget

Good to hear how things are going. Sorry about the sickness, but you seem to be managing things with your usual determination and courage.

I was feeling a bit sorry for myself this evening as my general lack of mobility and tiredness were making it very hard to get ready for a vist from my daughter and two grandchildrenou (4 and 18 months) tomorrow for four days.

I keep remonding myself to concentrate on what I can do, not what I can't but sometimes it seems harder than others. Still, reading your post reminded me to count my blessings, as did listening to the war widows at the Service of Remebrance. At least we are here. with our loved ones, to tell the tale.

Much love.

Mavis x

[brochoParticipant]

Hi Mavis sorry to hear you are feeling a bit down , I think its inevitable we all do from time to time . Hopefully the visit from your daughter and grandchildren tomorrow will put the sunshine back in the world. I treasure my time with my grandchildren especially George who is the eldest ( I so we are very close.was there when he was born) , he has always spent at least one night a week here as his mum is on her own. This year the remembrance stories seem much more poignant its heartbreaking to think of all the young lives lost and their families. I hope you have lots of fun in the next few days and you will be able to forget about the things you cant do I am sure the things you can do far outnumber them !! love Bridget x

[MinParticipant]

Dear Bridget, chearfull as ever, I am so pleased your experience with bendamustine is proving to be working and that your coping with the side effects.
Its pioneers like yourself that are going to lead the way for the future of others with this bl***y disease,
I hope that you continue to make progress in the right direction, and that your able to remain cheerfull.
Injecting yourself too, my,you are going the extra mile.
Best wishes for the future on it hopefully this is the one to kick it into touch for you.
Love
Min

[RozParticipant]

Hi Bridget

Sorry about the sickness part but glad that your experience with bendamustine is proving to be positive, your a great advacate for carrying on with this blood- terrible desease.
Keep up the good work, your cheerfulness is great to see.
All the best
Love Roz xx

[DaiCroParticipant]

Hi Bridget,

I am glad that you are settled on a treatment and I do hope that the side-effects diminish as you get into the flow.

Good luck with the injections, remember to swap sides… mine seem to be a semi-permanent feature and I found I was developing small lumps, so I am more careful how I 'map' my injections. I swap sides, starting as wide out as possible and working my way to the middle before repeating the process. 🙂

Take care, watch your neutrophils and don't hesitate to call in if you pick up an infection. Let's get the Bendamustine show on the road and keep it going for yonks*.

Much love,

Dai.

*Yonks – a highly technical chronological term, closely related to the phrase 'Donkey's Years'.

[brochoParticipant]

Hi Dai thanks for the tip working from the outside in sounds a good idea I will try that If Susannah or Tina reads this perhaps you can help me with some info I have developed an angry red rash on my feet and lower legs , ending just below the knees. Did Patrick ever have this ? Has Michael had anything similiar Susannah? How is Michael? I am curious about it but not over worried and I will ring the unit tomorrow It could be either Thalidomide or Bendamustine but not sure which Thankyou love Bridget x

[MariParticipant]

Dear Bridget,

I am so pleased to hear from you and that the treament is going well so far. Long may it continue to go well and have wonderful results for you. Keep well and good luck with all those injections,

Much love, Mari xxx

[mhnevillParticipant]

Dear Bridget

Thank you for your kind words. I feel much more cheerful now Kate and the boys have arrived, even if I did have to collect them from Leeds in thick fog!

Sorry about your rash. Hope it soon disappears. These drugs are so powerful aren't they, that they always seem to came with a price (side efects). Still my prayer is that they will really work good for you and kick you back into another long remission.

Much love

Mavis x

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