Need some info please.: Hi there, I am a 75 year... - CLL Support

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Need some info please.

JanEyre
JanEyre

Hi there, I am a 75 year old female. From Adelaide in South Australia.

I have still managed to manage all my everyday life,drive and I volunteer 20 hours a week for a goodwill shop.

I was diagnosed with cll just over 2 years ago.

I saw a haematologist twice and put on watch and wait.

I opted to see my own doctor for 3 monthly blood tests.

My counts have been slowly going up ,but my last results have jumped up

WCC and Lymphocytes.

WCC 18, Lymphocytes 12.8, platelets 150.esr 24.

and I now have to go to the cancer clinic at the RAH.

I have lost 20 kg, and am now getting ,very tired, night sweats, and aching bones.

Just wondering what I can expect to happen next.

Are these counts high or is my doctor being over cautious.

Cheers Jan

18 Replies
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AussieNeil
AussieNeilAdministrator

Hi Jan,

You haven't said what has jumped up, but I presume it is your lymphocyte count or your ESR. What's most of concern is how much weight you have lost. There isn't enough information in what you've provided to know what's going on, but something appears to be raising your ESR. Your CLL related results appear to be acceptable for someone with CLL (the WBC would be in the 30s with lymphocytes above 30, before CLL would generally be of concern). However overall trends are what's important, as is what's happening with your nodes and spleen (perhaps hinted at by your night sweats).

I would expect a haematologist at the RAH cancer to investigate why you have lost so much weight and whether that's due to an infection or your CLL becoming active. Unintentional weight loss of over 10% in the previous 6 months is one of the triggers for starting treatment for CLL IF the weight loss is due to CLL and not from some other cause.

Insist on a FISH test and ask if a TP53 test will change your proposed treatment if CLL treatment is recommended.

Keep in touch,

Neil

JanEyre
JanEyre in reply to AussieNeil

Thanks Neil,

As I thought my my GP is being a bit over protective. I haven’t been trying to lose weight and do eat cake a lot.!!

Thank you for the info on the blood counts , I think lack of knowledge about cll is my problem.

Will let you know the outcome of my

Visit to the RAH.

So good to be able to talk to people about this. Very grateful.

JigFettler
JigFettlerVolunteer

HI Jan! Welcome to the Forum, I hope you will find as much support and comfort as I did when I joined!

As AussieNeil has indicated - more information is needed to offer you direction. Treatment is started for a number of reasons - weight loss being one. From your bloods and from what you say I am surprised about your weight loss.

And so I ask is the weight "Intentional" or "Unintentional"? As AussieNeil implies - weight loss can be due to CLL - or another medical cause (there are many) and so you need to clarify that with your medical advisers.

Wishing you well - and do let us know how you get on!

Jig

JanEyre
JanEyre in reply to JigFettler

Hi Jig

Thanks for replying.

I thought my doctor was being a bit to worried. My weight loss is defiantly unintentional, I have very sweet tooth and is why I have also joined the healthy eating part of the community.

I will wait and see what the haematologist has to say , I am in no hurry to start treatment.

Hi Jan,

I'm local to you and have been seen at the RAH for my CLL for the past 14 years.

Please feel free to PM me about anything you would like to know.

JanEyre
JanEyre in reply to seelel

Thanks seelel, wow 14 years,what age were you when first diagnosed? I was almost 73 so don’t think I will still be visiting RAH in 14 years!!

I have an appointment with the cancer clinic in Outpatients on 13th February. This community is great ,I realise now that I had no understanding of cll. My sister in law has just passed away from Endometrial cancer.

Chemo made her so sick and she ended up dying in agony. This has made me to not want chemo. I now understand that the treatment for cll is a targeted therapy. Hopefully I will never need it.All the best to you in the will let you know how I go.

seelel
seelel in reply to JanEyre

I'm still a youngster and turn 73 next month.

A bit of information about treatment should you need it:

Chemo would not be a good idea given your age. You may have other co-morbidities that would also preclude it.

Both Ibrutinib and Venetoclax are covered under the PBS for those of us over 70. I would anticipate that you would be offered Ibrutinib as a mono therapy as a first line treatment. Should you not tolerate it or become resistant to it (as some do), then Venetoclax would be offered as a 2nd line treatment.

This is the situation today, but it changes year by year. If you ever need treatment, then the landscape may have changed by then.

Please note that there are no CLL specialists at RAH. They are all general haematologists in the department.

JanEyre
JanEyre in reply to seelel

Hi Seelel

Just wanted to touch base. I hope you are going well.

I go to the RAH on Thursday for my first appointment.

Ian getting very nervous about it can you give me an idea of what it will be like. I seem to be deteriorating somewhat. Tired, aching and bruising so easily then bleeding lots if I knock myself. Also red spots on my skin.

I think I am seeing a resident.

I am worried as my daughter gets married in October and I want to be well then. I am still doing as much as I can and volunteer once a week at Vinnies.

I would be grateful for any info.

Thanks Jan.

seelel
seelel in reply to JanEyre

Hi Jan - I've just seen your request. Can't do it this evening, but I will have time tomorrow morning so will answer in full.

JanEyre
JanEyre in reply to seelel

Thanks seelel ,

Sorry to be a nuisance.xx

seelel
seelel in reply to JanEyre

Hi Jan,

I don't know whether you have been to the new RAH since it opened but there is much about it that is confusing. If you approach by car the access is confusing. If you get into the carpark underneath the building, it is a labyrinth from which perhaps some never return.

And then there's the system of letters and codes. The appointment letter has a bar code on it that you are supposed to scan into a machine in the Entry Foyer. The machine produces a ticket that you are to take with you to the designated wing of your appointment. The ticket has a number on it that appears on a screen in the primary waiting area. The screen will tell you when to move into the secondary waiting area where your consultant doctor will be.

I prefer to avoid most of the above and take the tram which stops outside of the hospital. I also avoid the check-in machine and walk directly to Haematology which is Area 3E (this will be on your appointment letter). Go to the 3E counter and let them check you in.

Although you will have been given an appointment time, there is invariably a lengthy wait. A book is useful to pass the time.

I mentioned in an earlier reply that you will be seen by a general haematologist as there are no doctors specialising only in CLL.

You will presumably have had a blood test a few days before, so this is what to expect:

The doctor will discuss your results and ask about the symptoms you are experiencing. They will do an examination to determine whether your spleen is enlarged and also feel lymph nodes for swelling in a variety of locations. They will also take your pulse, blood pressure and listen to your lungs.

From what you have said in your posts about symptoms, it would seem that your platelets could be quite low. Your fatigue could be 'CLL fatigue' or it could be low haemoglobin. All this could mean that you are needing treatment or close to needing treatment.

If treatment is discussed I suggest you enquire about FISH testing and IgVH gene mutation status which you haven't had done yet. As far as possible treatment is concerned, the question is whether you take a tough approach for a long remission or a softer disease management approach. Probably at age 75, the latter may be preferable. If so, then I expect you may be offered a course of Ibrutinib which is on the PBS in Australia.

Everything I have said is from a patient perspective and not a doctor's perspective. You asked what you might expect at the appointment and I have just provided an idea of what possibly may take place. There may be no talk of immenent treatment and you may remain on Watch & Wait with another appointment in 3 months time.

If you would like to ask anything else before your appointment, please don't hesitate to do so.

Otherwise, should you feel uncomfortable with the doctor and what they want you to do, there is no harm in discussing it further on this forum or obtaining a second opinion from another doctor. Take it one step at a time and try not to let anything make you nervous. You can remain in charge of your illness without handing everything over to a doctor. There is time for deliberation.

All the best........

JanEyre
JanEyre in reply to seelel

Thanks seelel , my appointment is at the cancer clinic on level 5.

My husband goes to RAH to the Rhuematology clinic so knows his way around the hospital.

Thank you so much for you advice very much appreciated.

Jan

seelel
seelel in reply to JanEyre

Sorry that I rambled on about much that you already know.

I will be interested to know whether the Cancer Clinic is a stepping stone to the Haematology Wing. They may make a general assessment there before referring you on. I don't know.

You may even be assessed by an Oncologist, so if they refer you on, please ask about who within RAH may be specialising in CLL.

JanEyre
JanEyre in reply to seelel

I first saw a Dr David Yeong when first diagnosed. He told me that he also consulted at RAH. My doctor sent the last report to him. That was when I was sent the appointment with RAH.

Maybe it was his decision as we are not in private cover. He is a very nice haematologist, have you seen him ??

Thank you for your help.

Jan

seelel
seelel in reply to JanEyre

I have seen him in the corridors of the Haematology wing.

I just looked him up and he has a good pedigree as a consultant and researcher. Although he is not a CLL specialist, he specialises in myeloid leukaemia.

I have been seeing the same haematologist for nearly 14 years. She is however a specialist in multiple myeloma. She has been very good, although I have had to challenge her on 2 occasions when she started talking about treatment a few years ago. I remain untreated. With CLL, it is important that we hold the reins to some extent. Especially when not seeing a CLL specialist. CLL research changes the game at a rapid rate.

JanEyre
JanEyre in reply to seelel

Thanks for that, I am going to stop worrying and see what happens Thursday. I also would like to stay on WW but want quality of life also.

Will let you know what they say.

Jan

Welcome Jan , losing 10% of weight and lymphocytes doubling in 6 months is a sign for treatment

Hi seelel,

Just an update on my visit to RAH yesterday. My appointment was with the haematologist, there was a clerical error with my appointment.

I saw a Dr Andrew Verlint and then Dr Yeung. They think I am just about due for treatment, I go back in 4 Weeks it will depend on blood test results.

He mentioned the FISH test so think they did one ( took heaps of blood).

I also asked if FCR was the first line of treatment, he said no as there were better drugs now . That’s good.

I think he said Alcabrutiniv and Ventoclax are not on pbs but there were some great trials that he said are available.

My son in Darwin wants us to move up there as he needs help on his property, so don’t know if I can transfer to the Royal Darwin Hospital

If I start treatment in SA.

We will wait and see , but think we will relocate to Darwin in the next few months.

I hope you are doing ok.

Cheers Jan.

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