New to forum, hoping for advice. : Hi everyone... - CLL Support

CLL Support

22,366 members38,474 posts

New to forum, hoping for advice.

Crafty-girl profile image
21 Replies

Hi everyone.

I am new to the site and have found some really informative posts.

My husband who is 76 years old was diagnosed with CLL in 2008 and was on WW until August 2016. He also suffers from Parkinson's disease.

He has the TP53 gene mutation, therefore, his treatment options are limited, he was lucky enough to be prescribed Ibrutinib and was on the full dose of 3 tablets a day and everything seemed to be moving in the right direction until the beginning of December.

He caught a cold which led to a cough and unfortunately the coughing caused and small internal bleed. The first we knew of this was the massive bruising that appeared from his groin right across his abdomen and around to the middle of his back on one side. We contacted the nurse that has been assigned to my husband at the clinic he attends at The Churchill Hospital in the UK she told us to come into triage immediately.

He was assessed quickly had a CT scan and full bloods were taken.

The scan showed the small bleed and the bloods showed his platelet levels were really low, 2x10*9 /L all a bit scary as you can imagine.

He was admitted onto the haematology critical care ward where he received platelet transfusions, the platelet transfusions were done frequently over the next 10 days.

The dose of ibrutinib was reduced and eventually stopped altogether.

He had a PET scan and a bone marrow biopsy during the time he was on the ward.

He was placed on IV antibiotics and also given daily injection of Accofil 30MU/0.5ml to boost his neutrophils. The antibiotic changed to tablets after 3 days and he completed the course whilst on the ward.

Just before Christmas he was discharged after having a blood transfusion as well as more platelets. He went back to the ward over the Christmas period for more platelet transfusions. On average his platelet reading was hovering around 10x10*9/L sometimes dipping below and at others rising to around 20x10*9/L.

The report from the PET showed that there were no issues there to worry about but the bone marrow showed the the marrow is full of CLL. Therefore the ibrutinib had not worked at all despite showing signs early in the treatment that it seemed to be doing its job.

He is now at the stage where he has been prescribed a prophylactic antibiotic Co-Trimoxazole and having the Accofil injections every other day.

He has platelets transfusions at the Day treatment unit twice a week and a blood transfusion once a week.

This week we get the results back from a flow cytometry test in the hope that it will give us more understanding of what is happening and keeping our fingers crossed that there is a treatment out there and available to him.

We can not fault the care and compassion from the whole medical team.

Every department we have been to have shown us just how our NHS is working at its best to help us.

As you can imagine we are both worried and do not know what the future holds.

I know this is probably an unusual situation but am wondering if anyone else here has experienced anything similar.

Written by
Crafty-girl profile image
Crafty-girl
To view profiles and participate in discussions please or .
Read more about...
21 Replies
ap64 profile image
ap64

Glad you found us and sorry that the ibrutinib had to be stopped. Cannot provide any advice but I am sure some others will. There are many here who have experience with multiple treatments. Will say some prayers for you guys as you cope with this situation and hope the flow cytometry test will help provide some new options.

Crafty-girl profile image
Crafty-girl in reply to ap64

Thank you ap64 for your prayers they are much appreciated.

Good luck finding some answers. Glad your medical staff have treated you with kindness and understanding. It means a lot during desperate times if you receive some compassion along with your treatment. Sally (USA)

Crafty-girl profile image
Crafty-girl in reply to CLLCalifornia-USA

Sally it certainly does help to have such wonderful people supporting you especially when you have so many concerns and worries.

The medical team take time to answer any questions we have.

I know our situation is not good but just sharing with others helps too.

Kindness helps us deal with whatever comes our way. I will keep you in my prayers.

maggiesgrandmom profile image
maggiesgrandmom

Prayers coming for you and your husband today.

Crafty-girl profile image
Crafty-girl in reply to maggiesgrandmom

Thank you.

MelioraDay profile image
MelioraDay

Many prayers and positive thought coming your way

pkpayne profile image
pkpayne

Virtual hugs to you and your husband as you deal with this difficult situation. Prayers for you both.

Bubnojay profile image
Bubnojay

Hi Crafty-girl

While I am sadly not able to help with any suggestions, I thought I would respond to wish your husband well and hope that soon a treatment that will help him can be found. However my other reason is to say I hope our community is helping you. To be the carer and spend day after day watching, waiting, loving and sometimes despairing and holding your emotions inside you is so very hard.

So I just wanted you to know that others here understand what you are going through, and I wish you strength to continue to support him and comfort from our community.

Very best wishes

Bubnjay1

Love that photo.

Crafty-girl profile image
Crafty-girl in reply to Bubnojay

Thank you Bubnjay1.

Even though I have only posted once here, I have spent many hours reading posts and clicking on links and have found some great information.

I have also seen that other carers feel the same as me and I take comfort in seeing that my feelings are shared by others.

I am glad you liked the photo, it is one I took whilst visiting a butterfly house here in the U.K. Photography is a hobby I enjoy and it really helps to relieve some of the stress I feel some days.

Best wishes

Crafty-girl

Bubnojay profile image
Bubnojay

Is that the one near Monmouth ? I like photography too, but at the moment am suffering a surfeit of gray squirrel ones, who seem set on demolishing my bird feeder.😕

Bubnjay1

Crafty-girl profile image
Crafty-girl in reply to Bubnojay

It was at the RHS gardens in Wisley. They have a butterflies in one of their large conservatories every spring. Grey squirrels love bird feeders!

DeletionLady profile image
DeletionLady

Wondering if your husband might be able to get into a trial with Ibrutinib in combination with Acalbrutinib or Ublituximab? The latter combination has been working well for me so far and I have a 17p deletion. Some respond better to combination treatments than to Ibrutinib alone. Does your treatment center offer trials for patients with relapsed (previously treated "high risk") CLL? Don't know what country you live in but would Idelalisib be an option? Most of us here on the forum are not Docs - and I am the last to offer any real substantive medical advice - particularly the fact that I am totally ignorant about how his Parkinson's may play into CLL treatment response but just wondering if there still may be a treatment option. Hope you can feel our hearts rooting for you.

DeletionLady profile image
DeletionLady in reply to DeletionLady

Oops! I see you are in the UK! All the best as you meet this challenge.

Crafty-girl profile image
Crafty-girl in reply to DeletionLady

We are at a really good centre and I know they offer trials. Tomorrow we meet with the consultant again so hoping they will have some options to offer my husband. Luckily the Parkinson's medication does not cause any issues with medication prescribed so far. Thank you for your advice.

It is so nice to get so much support and good wishes posted here.

Peggy4 profile image
Peggy4

What a rotten time you've had. You must both be exhausted. I do hope things get better soon. Keep in touch.

Peggy

Crafty-girl profile image
Crafty-girl in reply to Peggy4

Thank you Peggy.

Hopefully I will have some positive news to share with you all soon.

Crafty-girl profile image
Crafty-girl

Yesterday we got to see our lovely consultant and after receiving the results of all the tests and having had a team meeting, told us that the team are pretty sure that my husband has PLL as well as CLL.

Apparently this is a very rare blood cancer that can happen in around 1% of CLL diagnosed patients. This undoubtedly accounts for the problems that my husband has been experiencing rather than the CLL itself. The prognosis without treatment is not good, in fact maybe only months of a not great quality of life.

However, there is an option to remove the spleen and therefore a great number of the (PLL) cancer cells and hopefully give some extra years of a much better quality of life.

As you can imagine we were a bit taken aback by this news but are obviously taking the advice of our consultant and opting for the splenectomy. This in itself throws up the issue of his while immune system being vulnerable even more so than it is now but there is a vaccination schedule to be followed at least 2 weeks prior to surgery that will help.

I really wanted to update you all after you have shown me such compassion and support and the information might well help someone else at a future date.

Bubnojay profile image
Bubnojay

Maybe not news you wanted crafty girl, but at least you know exactly what is going on. Even better, a solution that helps and offers to extend hubby's life. Lots living without a spleen and with antibiotics.

All so hard to deal with, do not doubt that many of us are thinking of you, thank you for sharing with us.

I try not to use others words, but they are so appropriate, stay strong, hope always. We should all aspire to be as strong as you have been.

Lots of luck and hugs to you both.

Bubnjay1

Crafty-girl profile image
Crafty-girl in reply to Bubnojay

Thank you Bunnjay1 all hugs and kind words are very much appreciated.

You may also like...

Some good news and hope

very special day today. My wife Jan was diagnosed with an incurable blood cancer CLL this day 9...

Still new to the forum but I have started with Ibrutinibe.

iffects apart from light headache some mornings or naights. 22-10-2020 will go back for blood work....

New Guy Hoping for some answers!

excellent. I was diagnosed mid Nov with CLL following a routine blood test for another heart...

Needing advice and support

though this could also be due to his diet). His last blood results showed significant changes and...

Still on hold for stem cell transplant

of the bone marrow showed zero CLL. but \\"only 20% cellularity.\\" Not much going on in his...