Help....: Hi everyone my mum has just been given... - CLL Support

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Help....

Hi everyone my mum has just been given the news that she has Cll with 17p deletion and itp which is not so good, she had been told that she was to be started on ibrutinib and was given the drug home! But then received a phone call from the haematologist telling her not to take anymore as he was concerned she could bleed with pill and as her platelets are seriously low at 1 would not be so good...he is now going to discuss my mum at a conference on tue with cll specialist Mike leach present! At the moment mum is at home really ill in bed has sore back, legs hands and feet along with blood blisters in her mouth! She has to go back to the hospital on mon but I feel as if I'm watching my mum slowly fading away and not much urgency happening to get my mum on medication that will help.....

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Laurag78

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11 Replies

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NewdawnAdministrator8 years ago

Hi Laura,

I can't begin to give advice on how to handle your mum's present health difficulties but felt compelled to respond because you sound so desperate and worried at the moment. It must have been such a blow to have the Ibrutinib snatched away at the last moment when it probably represented an answer to your mum's problems. But obviously it would have been extremely risky with her depleted platelet level.

Tuesday must seem like forever away with your mum feeling so ill but the positive thing is her particular medical needs are going before an auspicious panel so hold out for some good answers there.

What to do in the meantime? Basically anything that keeps mum comfortable and pain free but most importantly, as emotionally buoyant as she can manage. Couldn't they give her something for the awful mouth blisters which must be very distressing. Does she have an appropriate level of painkillers for her back, legs and hands? Can the GP not arrange some home nursing to help her over this present crisis.

I say present because that's what it is. I feel sure they'll work hard to find an alternative solution for mum so stay strong and positive and have as many treats and little luxuries that get you over the weekend. And that means you too! It's hard being a carer watching a loved one suffer. But your support will be immeasurable to her. Let our support be immeasurable to you in return.

Best wishes and tell mum we are thinking of her,

Newdawn

Peggy48 years ago

Hi Laura. It must be so difficult for you to sit and watch your mum suffer. Also to have been given the IIbrutinib only to have it snatched away. However, good that they were keeping a close eye and deemed it unsafe at this time. It seems as though they are working towards a solution and until then your love and support will be the best medicine for your mum. She is lucky to have you.

Peggy

wroxham-gb8 years ago

Hi Laura

Really struggling to know what to say to help but justknow I at least need to offer you and your mum my support.

It must be awful for both of you, your mum suffering, you watching and not knowing what to do.

I am thinking of you both at this difficult time.

Please keep us updated Laura.

Sue

MsLockYourPostsPassed Volunteer8 years ago

Please keep us updated, but don't hesitate to take your mum to the hospital if things take a turn for the worse. Great that her doctor is presenting her case to specialists!

NooNoo148 years ago

I hope you get some answers very soon and your mum receives the treatment she needs to cure her symptoms but please Remember to look after yourself as well.

Netty

Bubnojay8 years ago

Hi Laura

Oh it is so very hard to care, to watch and be unable to do anything to help, and my heart goes out to you. This is a very difficult and traumatic time for you both.

Blood blisters although minor to Mum's other problems really irritate, hopefully she is able to eat soft food with no hard edges to keep her strength up.

Loathe though I am to offer any advice is it possible she would be able to sit surrounded by pillows in an easy chair to relieve the pressure on her back.

I'm sorry if these thoughts seem intrusive and not at all helpful, but I feel I want to do something to help in addition to offering sympathy for you both, finding yourselves in this situation. I wish we could do more to support you, but know that many of us will be thinking of you both.

Perhaps tomorrow will bring some positive help, I do hope so. I echo Newdawn's comment, do tell your Mum we are all thinking her.

Wishing you strength to continue coping.

Best wishes

Bubnjay1

Lenny1238 years ago

low platelets in my case recovered reasonably with fcr, now on ibrutanib. Bottom line is please get to a cll specialist who can choose appropriate therapy. perhaps with some chemo, there can be sufficient recovery to go back on ibrutanib.

Best of luck, Pray all goes well.

Jenferdog8 years ago

So sorry to hear you mum is unwell, hope that they can make her feel better soon and have some positive news for you next week.

Thinkimjob8 years ago

Do you actually mean the platelets are 1 ? That is very low indeed, and I am surprised she is not being admitted to hospital. Do not hesitate to call an ambulance if you are at all worried, and take care when she is being moved. Don't bang her head. Good luck on Monday.

ThreeWs8 years ago

Hi Laurag78,

You may need to be assertive to get your mum proper medical help. Some causes for low platelets can be addressed separately from treating CLL. Knowing the cause that might be attributed to her low platelets can vary from her spleen sequestering too many platelets, severe ITP (Idiotype Thrombocytopenia Purpura) an auto immune dysfunction or her bone marrow being packed with CLL cells. Each condition can direct different paths to getting her back to health. Don't give up and push for early help.

WWW