Visit to haematologist today

[JanEyre]

Hi everyone, hope all are well and coping with these difficult times.

I had my dreaded visit today and the news was not as good as I had hoped. Looks like I will be treated with RChop. My bloods look pretty good to me. ALC 8.96. Absolute Neutrophil 4.93

Platelet count 190. This is the Australian figures.

Fish test shows unmutated. I assume that is 17p etc .IGHV is mutated .which is good.

My doc said he is doing another test as my cll

Is looking to be maybe a more aggressive cancer.

Also had another CAT scan and he is ordering a PET scan and a lymph node biopsy.

Will not know much more till my next appointment in 4 weeks. Maybe he is thinking it could be Mantle Cell Lymphoma.

I have lost a lot of weight unintentionally. Also night sweats , trouble eating . Any ideas anyone.

Thanks Jan

[Panz]

Wishing you all the very best in what you and they decide is best for you!!! Please keep us posted...we not only really care are how you are doing but we all learn from each other.

Stay safe and be healthy!!

Panz 🙏☘️💕😍💗🌞

[JanEyre in reply to Panz]

Thank you Panz.

So thankful for the support from you.

Jan

[littledab]

Wish you the best of luck..

we all learn from each other

Stay in touch

💪🏻🧡littledab

[JanEyre in reply to littledab]

Thanks littledab. xxx

[Canuck901]

Are you currently on any treatment? Hope the best for you

[JanEyre in reply to Canuck901]

No treatment at the moment.

Thank you . All the best to you also.

[Miggins60]

I really hope it turns out better than you fear. All the best. M

[Poodle2]

I'm really thinking of you. I should be having an ultrasound and a biopsy in the next two weeks myself so I'm really anxious. I posted yesterday... Why does he think it's something more aggressive? Because of your weight loss?

[JanEyre in reply to Poodle2]

He did say due to my weight loss, night sweats and bruising. He has ordered another test which he said will tell if it is becoming another more aggressive cancer. Didn’t say what that test is.

The very best of luck to you , please let me know how you go.

Jan

[Poodle2 in reply to JanEyre]

My doctor said he would like to get it done to rule out transformation. I will keep you posted. The best of luck to you too. Let me know how you get on. Let's pray it's as good news as it could possibly be.

[NandySTW in reply to JanEyre]

I’m sorry your symptoms have become worse but am grateful your doctor is following through on them. That your test results will bring helpful information to guide the way forward is my hope. Thank you for sharing your journey here.

[MsLockYourPosts Passed Volunteer]

It sounds like he is looking to rule out a Richter’s transformation. RCHOP is one of the often used treatments for that. Try to stay positive (I know. Easy for me to say). The good news is that your doctor is being thorough and looking at all possibilities.

[JanEyre in reply to MsLockYourPosts]

Thanks for that hadn’t thought about Ritchers Transformation. I have so much to learn.

So glad I found this site.

[AussieNeil Administrator]

As MsLockYourPosts replied, your doctor is being thorough and going through the process of checking if your symptoms are due to Richter's Transformation (RT). You have good CLL markers and quite good blood test results for your CLL, which is reassuring. The blood test might be a check of Lactate Dehydrogenase (LD or LDH). This can be markedly raised, like 3 to 5 times the upper reference limit with RT, but that's not always the case. Any RT should show up as a hot spot on a PET scan and then biopsy of that node is the definitive diagnosis.

Hopefully all this just a false alarm, but unlike CLL, RT is curable. Please keep us informed.

Neil

[JanEyre in reply to AussieNeil]

Thanks Neil, he rang today to let me know that the CAT scan was clear.

He has booked me for a PET scan in a couple of weeks .

Andrew Van Lin is a really nice haematologist at RAH I really trust him.

So I am very lucky seeing that I am in the public system. Thank you for your input had not thought about Richters.

Hope all is well with you.

Jan

[1ofakind]

Sorry you are going through these symptoms and the anxiety makes it so much more difficult....

Please know that we care and are interested in seeing you beat this with the least discomfort ....

Seeing all the good wishes and the knowledgeable advice helps us all cope with these hopefully bumps in the road ..,,

Hope you feel better very quickly !

Be Well!!

[JanEyre in reply to 1ofakind]

Thank you so much .

Jan

[4Glory]

Hi Jane! I love your screen name by the way! I'm praying they figure out the best treatment for you. I think we often feel like an unsecured buoy, floating on a giant sea, no land on sight. BUT! If you could see the end from where you are now, you would appreciate all the testing your doctor is doing!

🌸 Lisa

[JanEyre in reply to 4Glory]

Hi Lisa

JaneEyre was my fathers pet name for me. It was one of my favourite books when I was a young girl.

Thank you for your lovely words they really sum up how I have been feeling lately.

I will endeavour to be positive about things , I am sure that my doc will do the best he can for me.

Jan xx