This topic contains 32 replies, has 13 voices, and was last updated by 
Helen 12 years, 4 months ago.
Hi Everyone
I am hoping one of you can put my mind at ease ,As you know Slim came out of Kings on the 1ST of June after having SCT.
He has to attended the local hospital twice a week to have bloods and make sure everything is ok,.
What I was not expecting is Slim having to have so many units of Platelets,I know they will not pick up until his neutrophils start rising.I have voiced my concerns and in general everyone says this is normal.He does not have to return to Kings for 8 weeks.
I have never heard anyone on the site who has had SCT,saying they are having platelets all the time,!!!!!
Can any one confirm this is normal .Eve
Hi Eve
I don't know much about this and perhaps the best person to speak to is the nurse specialist at Kings, but I think it is not uncommon for a few people to take a long time for their new cells to engraft and consistantly produce the full range of normal blood cells. Are Slims platelets and neutrophils going up and then down a bit? He needs to have the platelets until his counts reach safe levels. I do hope you are looking after yourself too.
Love Helen
Hiya
When I was in hospital having my sct, on the 3rd week I had two bags of platelets but didn't have any more.I suppose the large amount of chemo they blast you with causes the new cells some initial problems.
Take care Ozzy
Thank you Helen and Ozzy
For your replies,
When Slim was in hospital at Kings he had 5 units of platelets,Then when he was taken in to Canterbury hospital he was given 3 units of blood and 1 unit of Platelets,He has been out 10 days and had 2 more units of platelets,and we go in this afternoon for another unit.
I asked the consultant in Kings,he only had the results from Kings not Canterbury,he said the last results were good,but he had had Platelets the day before.
His Neutrophils have been up and down,I know if they increase so will his platelets,I am just surprised they do not seem to think he needs another course of injections to get his neutrophils to go up.
I just have not heard anyone on here having this problem,and as I said,the hospital do not seem to worried about this,although a staff nurse did ask when we would see a consultant again.The problem with this is we are still under Kings for 100 days,although I can ring the myeloma nurse,the treatment is being done in Canterbury,who do the bloods and platelets,so how much the correspond with each other I do not know.
So you understand my concerns,Eve
Hi Eve and Slim
Yes I understand your concern I was worried with every ache and pain cough or sneeze but the Dr's and Nurses said all will be fine and it was and is 😎 I had to have more blood once and platlets twice after i got out within my 100 days 🙁 but it picked me up a little bit each time they threw it in 😎 I was told "Tom you are in this for the long haul" and I was.
Hope the Bags of "Stuff" that Slim keeps getting is soon less each time/
Love to you Both
Tom "Onwards and Upwards" xxxx
Hi Eve
I hope slim is ok apart from the platelets I dont know about them but you could phone ellen I am sure she will know the answer
Regards to Slim
Love Jo xx
Hi Eve Im sorry to here about Slim, I do remember Michael having Platelets after his second Sct, I was expecting red in colour and they were more yellow. He had about 3 or 4 bags
Love Suex
Hi Tim Jo and Sue
Went to hospital today,and Slim had more platelets,the sister said it is normal,and she thinks Slim looks very good after SCT,but he now weighs 62k so all skin and bones.
Going for bloods on Friday instead of tomorrow so will be able to see how far they drop,today before platelets they were 10 and neuts 1.0,he says he knows when he needs them as his legs become very heavy.
Needs potassium so,banana,s apricots,prunes,on there way as unable to take the tablets,.They upset his stomach.
It seems they will not give him a course of injections to help his neutrophils if they are over 1.0 which they are.
learning something new all the time,Love Eve
Hello Eve,
I am sorry that you are having this worry with Slim's recovery. Steve also had his SCT in Kings and was in the same position when he came out because his treatment and monitoring were all done in Pembury, and yes, you do sometimes wonder if they talk to each other. Steve's platelets and neutrophils seemed to take ages to come back up, and if i remember rightly there was some problem with the clotting agent in his blood which is also related to platelets. I dont remember him having much whole blood but I do know he had a lot of platelets. No one seemed worried at the time and he did eventually come back and in fact recovered very well over time. We find it really helpful to talk to Sophie up at Kings, our specialist nurse. She always has time to talk and is very knowledgeable and wise. I remember that Steve's neutrophils were bumping along at a very low level for what seemed like ages, he did not come out of hospital for three and a half week but suddenly when they did start to improve they came up fairly quickly, as did his haemoglobin which was also low for ages.
I do hope thingsz settled down for Slim soon and you can both start to relax and just enjoy some time together,
Love Mari xx
hi eve
i can only go by what henry had. during his stay at oxford for hisc sct he had platelets on 3 occasions and when he came out of oxford he then had platelets on 2 occasions at our local hospital. this was all because his levels were low. he had blood a few times as well. thry had to give him piriton before the platelets as he was allergic to them. we are off the the macmillan unit tomorrow for the pamidronate drip. monday is the rash biopsy. i will let you know how i get on with thd counselling. take care.
sarah x
Hi eve
peter was having platelets almost every other day- of and on -eventualy they gave him an injection that helped.
He never had any with his first sct, but by now you know every one is different. If he is getting them its because he needs them. It all takes time,and the worrying does not stop. But think posative……..
Min x
Hi Mari Sarah and Min
My Problem Mari is I am deaf so phones are a no no,I hate them,miss a lot of the conversation!!!, so prefer to do face to face,If Slim goes on the phone by the time he has come off,he cannot remember what was said,lol
Would be interested to know how you get on Sarah,I know a few people who actually do counselling,may be that,s what puts me off it.
Min,your right ,I know they say when people have this they worry once they come out of hospital I suppose its a very fine line to walk on until you get use to the ups and downs.
Felt a bit better after talking to the nurse about it,so much emphasis is put on the main SCT then BOOM!!! out you go,get on with it,with very little knowledge except if he,s ill take him in.
As you know to your cost,with Peter its a fine line,
I will look at it as another learning curve there has been so many over 18 months, Love Eve
Hi Well Friday was an easy day,bloods in the morning then waiting for the call to go back in for platelets.It never came,so rang up,Slims platelets have gone up to 26,still boarder line,but they decided platelets not needed.
Have another appointment on Monday,same again bloods,so we will see what results,that brings.
Can anyone tell me when they will remove the line from Slims chest???Its handy at the moment because of all the bloods taken,but it has been in since 23 of April.
Love Eve
Hi Eve/Slim,
My platelets and Neuts were also very sluggish and slow to rise. I had both Blood and Platelet transfusions after being re-admitted into Hospital with Neutropenic Sepsis and then contacted e-coli which was quickly sorted out.
My platelets eventually topped the 100 mark but only just and nowhere near the heady heights of 130 first SCT.
Sounds as though Slim is having a harder time of it but I'm sure he'll get there. As for the Hickman line as long as it isn't infected they will most likely keep it in while they need easy access to Slim's Blood Lines. Leading up to my first Transplant I had mine for 6 mths before it became infected and had to be removed.
Take care both of you and I do hope things pick up fast and you manage that Holiday you both deserve one.
Keith.
Hi Eve,
I think we have covered the Hickman Line removal elsethread but as soon as they are sure it won't be needed fot regulatr infusions of platelets/bloods etc., they will whip it out.
I was told that they like to remove it pretty quickly because long term wear (6 months or more, so no need to worry yet) can cause te flesh to mould itself to the line, making it that little harder to remove but even then we are not talking major surgery… just a little longer procedure. Mine came out four weeks after my SCT and came out like a breeze with one registrar and me in a side room of the Daycase Unit. I was surprised how quick and how painless it was… a little sensation on a tug or two and then he was saying 'that's it'.
It sounds like they are ready for slim to start producing his platelets independently… and if his next reading is up hat might be the time to ask about the line removal.
Slim (and you) are now on that road to recovery and hopefully a long remission… enjoy it all.
My son Ross and his wife Kelly and my grandson Owen (2) live out on the Isle Of Sheppey at Minster )he's a prison officer and she teaches at another prison… is that far from you?
Best wishes and regards as always.
Dai.
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