[KeithH17Participant]

I had a blood test today which showed Hb (8.9 )Neuts(2.1) WBC (2.9) Platelets (18).
I received a call from the hospital saying that because of the low Platelet count I have to go back Monday 11am for another test. I have ALWAYS had low Platelets but this is an all time record low and I wondered if anyone else has had such a low count. The hospital is puzzled by this as I am myself and I wonder at what level would the alarm bells start ringing? I also have an awful pain in my left side which is between my bottom rib and my hip bone. The Consultant said it is likely to be a muscular problem and I'll be keeping an eye on it.

Stay well everybody.

Keith.

[eveParticipant]

Hi Keith

Alarm bells start ringing at under 20,Slims went to 17, need platelets below 20' your blood is low to,so I see a transfusion coming,give you some strength for Christmas ,it,s worth it Keith,try to have a good Christmas .love eve

[KeithH17Participant]

Thank's Eve, actually I did have a Blood and Platelet transfusion just before I was discharged from hospital last Tuesday. My Hb went up to 9.7 but then back down to 8.9. I never get into double figures and all since I was on Revlimid which hammered the PP's but at a cost. I should have restarted my treatment of Bendamustine last Monday but had to be rescheduled to start next Thursday if all is ok. Having to be on drugs indefinitely is having an adverse effect on my blood counts and it's a catch 22 situation, I need the drugs to knock the MM back but the treatment is knocking everything else back also. If only there was a treatment that battered the Cancer cells and left the good ones alone. Up to now Velcade has been the kindest treatment in that respect. I now hope Bendamustine can do a similar job and get me back into remission.

Best wishes for Christmas&New year with plenty of good health.

Keith.

[MicheleParticipant]

Hi Keith,
Have you had any problems with your spleen? It's just that when my dad's platelets dropped down to 3 it was because he had an infection in his spleen. I think that's on your left side. :-/

Hope you feel better over the Christmas break.
🙂

[andygParticipant]

Hi Keith.
It was good to see you at the day case unit Friday. Sorry I couldn't stay longer for a catch up. We were having windows replaced! Your platelets are very low but at least your neutrophils are good – I thought I was doing well with my neutrophils at 1.9 My potassium is low again so I've got those awful tablets to take again. Well I would if I'd remembered to bring them with me to Nottingham oops. Lots of bananas for me over Christmas.

Have a good and healthy Christmas and new year.

All the best
Andy

[SueMParticipant]

Hi Keith.

I only know from my asct my platelets went down to 1… I had numerous platelet infusions.
I think their magic number was 10 and below=platelets given and i was allowed home when above 10 under that i was too big a bleed risk.

The spleen can sponge up platelets reducing the circulating ones ,if theres liver problemsare your liver blood tests good?

Plse take it easy as your platelets are very low do not bump things,cough gently and shave carefully etc which I'm sure you already know.
Willing your bone marrow to behave and boost up a bit

best wishes
Sue

[jmsmythParticipant]

Hi Keith

When my son was 18 months (now 30) he was covered in bruises. Just lifting him for his cot caused massive bruising. Went to hospital where his platelet count was 8. After tests they decided to do some procedure (for the life of me can't remember what). Just before they took him down test showed that platelets had risen slightly procedure postponed and every day platelets climbed. As Sue says go easy. I'm sure you know all,this but hope that platelets start to rise.

Have a healthy Christmas and new year
Love Jean x

[anndrysdParticipant]

My platelets went down to 18 when I was on Velcade in the summer, but it was a recognised side effect so I wasn't given a transfusion as they would just drop again. It meant I couldn't have the Velcade, so I was not amused at having a 130 mile round trip for nothing. As they persisted low, the dosage was reduced, but the course extended from 6 cycles to 8 cycles. I'm now at the giddy heights of around 60. The doctor did suggest before I went on holiday at the start of the month that I shouldn't go jumping off anything because of the bleeding risk, but I have managed to restrain myself!

[DaiCroParticipant]

Hi Keith,

One of the factors in taking me off Revlimid was a Platelet reading of 90, My Platelets had dropped over 4 months from 150 to 120 to 100 to 90… and their concern was that if the Platelets kept dropping they might not be able to get them back under control! Looking at your readings their reasoning seems a tad dubious.:-/

While in hospital last week my HGB dropped to 7.9 and my Neuts to 1.2… (a result of the Sepsis and the Lung Infection) so they gave me an early Xmas gift by way of 2 bags of blood. 1.2 is the lowest I have been since my SCT. Hopefully it will rise back over the 2 point… (average 2.5). Your platelets reading seems inordinately low… I hope they can get it up over 20 and possibly 40/50 soon. 🙂

The medics keep on telling me to avoid infected people and unfortunately I have to put their warnings into practice immediately.:-S

Our daughter Kirstin rang us yesterday to inform us that Alfie (6) has suspected boy-flu. His GP told his Mum to keep him wrapped up and warm over the week-end and he will be given a course of anti-biotics on Monday. Janet and I are devastated… we were to have them for tea on my Birthday (24th) and we were all meting up at Son-In-Law Andy's parent's house for Xmas dinner. an annual event. But now Janet and I will have to cry off.:-(

I am due back at the hospital's Day Case Unit at 3pm on Thursday 27th for bloods and other tests to ensure that I am fit enough for my first Bendamustine Treatment on Friday 28th. I have been given fair warning to stay away from anybody with any case of lurgy… and those in contact with anybody with any case of lurgy. :-0

So no contact whatsoever with lurgyfied people and those in close contact with lurgyfied people… which means Alfie and Edith and their Mum and Dad and Dad's relatives. It is always a lovely get together on Xmas Day and the fact of not being able to see Edith and Alfie in particular leaves Janet and I feeling bereft.:-P

It also affects my Birthday tea-party bash tomorrow and our Boxing Day get together/visits. All for the sake of staying bug free for Bendamustine. Thank goodness for Skype! 😎

Janet has got everything needed for our Xmas dinner because we had planned our own Xmas dinner on Boxing Day in the knowledge that this may well be our last Xmas together… and whichever/whatever it has now been diluted by lurgy and its effects. 🙁

Ho Hum and Ho, Ho, Ho… but never Bah Humbug! 😀 😎 😀 😎

Dai.

[tomParticipant]

Hi Keith
Sorry to hear bout your counts :-|, I hope they and you get well for Santa as am sure you know he is on his way ready or not he he.

Dai shame your Birthday tea is put on hold ( another on its way next year ) have a great birthday Dai, am sure that guitar will get a good airing,enjoy.

Tom " onwards and upwards "

[PerkymiteParticipant]

I wish you the very best of luck Keith old buddy and I am also keeping my fingers crossed for you too Dai.

Kindest regards – vasbyte

David

[KeithH17Participant]

Thank's Tom,David,Dai,June,Sue,Andy,michele,Eve,Ann,don't think I've missed anyone? Go for a blood test tomorrow morning then that's it until Thursday when I start up the Bendamustine.
Merry Christmas everybody and hope you all have a good one.

Keith.

[EvaParticipant]

Dear Dai,
Will be thinking of you and Janet on Christmas day.
Eva

[EvaParticipant]

Dear Keith,
I hope you can have some good times when you feel that you are really yourself, in spite of all the tests and treatments. Also really hope your platelets go up. Are you a candidate for intravenous immunoglobulins?
Best,
Eva

[KeithH17Participant]

Hi Michele

It's interesting what you say about the Spleen. During my last but one admission into hospital one of the Doctors after examining me asked if I had an enlarged Spleen and of course I said no as during all the tests I've had this has never been mentioned before but after what you say it's got me thinking. I did ask him why he said that but he didn't elaborate. I will be following this up as I've still got the pain after 5 days.
Thank's again Michele and have a nice Christmas.

Keith.

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