Telephone consultation today : Please keep... - CLL Support

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Telephone consultation today

kitchengardener2
kitchengardener2

Please keep everything crossed for me today. I have a telephone consultation with my haematologist at 12.15 today. As usual, I am nervous and anxious. I am still watch and wait and I feel generally very well.

35 Replies
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Good luck. x

Jm954
Jm954Administrator

Good luck, let us know how it goes :)

Thank you, will do.

Thinking of you 🤗 hope it goes well xx

Thank you x

Fingers crossed for you.Peggy

Thank you xx

Hi. It's always a nervous time when waiting for the call. Pleased that you feel well, Take that as a positive. Good luck.

Well I got the call earlier than I expected. Dr Munro is generally pleased with my progression. There is a little change in kidney function but not enough to cause concern. My numbers are Heamaglobin is 103 White cells 159 and Platelets 151. She said that because of changes I wouldn't now qualify for Acalabrutinib and FCR is not good for over 60s so it would be something else, she did say but I can't remember just what she said. So I am to stay watch and wait for another 2/3 months unless I notice any changes. Feel quite relieved that it is over and I can relax again.

FCR is used till 65. I was 63.5 when I had it. My markers are 13q mutated. What are your markers? I got second and third opinion when treatment was mentioned. They all agreed on FCR. They wanted me tested after 3 cycles. I was able to stop. It was uneventful and had my port removed 5 months after treatment.

Hope ur able to get a second opinion. You have time. In fact my hematologist insisted I do that. 🙏💕

Markers have never been discussed. What are they?

Tells you deletions and mutations. Needed to choose treatment. You probably had them but didn't realize what they were? Some are 17p, 13 q...mutated or unmutated. IVIG test, Fish & Flow cytometry are all tests that hematologist should order when diagnosing. Sometimes scans, node biopsies or bone marrow biopsies are also performed. Do you see a CLL expert and what country do you live in?

I am in UK on the Yorkshire coast. I see a wonderful haematologist who has been dealing with CLL for many years. Not sure if she would call herself an expert but I am happy with her care. I was diagnosed in November 2018, I have had two CT scans and 3monthly blood tests. Not had any bone marrow biopsies.

Ask her your markers ( deletions/ mutation status) FCR is rarely used and only in certain patients. Hope you can get a second opinion. I am not familiar with how UK does that. 🙏💕

mrsjsmith
mrsjsmith in reply to GMa27

In the UK markers are only tested pre treatment. Colette

Thank you Colette. Stay safe Alice x

GMa27
GMa27 in reply to mrsjsmith

So then since treatment was mentioned then she should be getting her markers done. How can they tell her what kind of treatment if they didn't know her markers?

mrsjsmith
mrsjsmith in reply to GMa27

Because Alice is still on watch and wait for the next two/three months, and we have limited choices of treatments in the U.K.

GMa27
GMa27 in reply to mrsjsmith

My name is Alice too! Thanx for explanation.

Treatment has been mentioned before but then my white cells improved and I had no anemia so I was let off. Dr is keeping a check on me because she doesn't want me in hospitals during the pandemic.

Kitchengardener,It’s fairly easy to check your Haematologist online.

Perhaps before you have treatment it might be worth asking for a second opinion. Geography not my strongpoint. Are you far from Leeds ?

Try not to worry about it. Things are done differently in the UK.

Colette

About 80 miles from Leeds. Not sure I would have the courage to request a second opinion. I actually do trust my doctor and her team, they have always replied to my questions. Alice

Hi Colette, I looked her up and she is a lead heamatologist with excellent reviews.

In the UK a FISH test, which tells you which mutations your CLL cells have, is usually done only once you are scheduled for treatment. The result informs your haematologist which course of treatment would be best for you, taking into account what your blood counts have been doing plus factors like age, how well you feel and any other health issues you may have.

In the UK you can be treated with FCR certainly up to age 70 if considered fit enough to take it, and FCR is still considered the "gold standard" when you are13q del together with mutated IGHV.

Recently NICE approved the drug duo Obinutuzumab-Venetoclax for first line treatment, a combo very promising in clinical trials for a range of CLL mutations.

Thank you for that. I couldn't remember what my Dr said plus she has a very pronounced Scottish accent. I will write down what you have said.

It’s a great feeling, isn’t it, when the consultant says 2/3 months before the next call? And breathe....So glad the news was good.

Stay safe, Fran 😉

Thank you, the relief is amazing. You stay safe too x

🙏🙂 couldn’t find a crossed fingers emoji, but with these you know best results are wished for you. Sandra

Thank you , it obviously works 😘😘

Well done! I am always apprehensive too. Onwards and upwards as they say!

Yes glad it's over!! Stay safe

Good news! Sandra

Good news to receive.Did you ever get to organise a support group?

Sue

Hello Sue, yes I was happy today. As far as support group goes. Covid19 hit but I am in touch with three people and we have spoken a few times. We shall hopefully get things moving eventually. Stay safe Alice

Hello kitchengardener2

We are all allowed a bit of anxiety when doctor appointments loom, but don't let it ruin your day. Blessings.

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