Appointment update: Hi Everyone, Well today was... - CLL Support

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Appointment update

stunned profile image
6 Replies

Hi Everyone,

Well today was D Day, the appointment for the results of several blood tests and a Ct Scan and the discussion of which treatment.

I have worried myself sick, drove myself mad with questions, what ifs and whys....

I took my 2 sons with me to help me make the right decision as to which path to take re treatment options, but still hadn't got a clue as to which i would choose.

Drum roll please.........

Treatment has been postponed, yippee......

It seems my blood results and CT scan were better than expected, my enormous tonsils have dramatically reduced in size ( oraldene medicated mouth wash seems to have worked a treat, or it could just be a coincidence), lymph nodes in neck are still big but scan shows that there has not been a dramatic size increase in the others.

So the decision has been taken to delay treatment until it is absolutely necessary and i am now going to be monitored more frequently.

Unfortunately my holiday to San Francisco at the beginning of December has been advised against due to the length of time flying, the chance of infections and the possibility that treatment could be started by then, but that is a small price to pay if it delays treatment.

To say i am relieved is an understatement, and although i know that treatment has not gone away for ever, it has been delayed for a short while.

And it means i can hopefully enjoy Christmas without the side effects of treatment.

Thank you all for your support and words of wisdom....

Anne

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gardening-girl profile image
gardening-girl

"Drum roll please.........

Treatment has been postponed, yippee......"

I'm cheering for you!

gardening-girl

GMa27 profile image
GMa27

Hopefully you can skip treatment till after the holidays. Unless ur in pain or have really bad numbers, anemia etc I don't see why treatment can't be put off few weeks. If your follow up is Oct and things have progressed...then that is different story.

Enjoy your freedom from treatment while you can. I was able to put off for a year. I got second opinion during that time. Treatment successful so far. Hopefully chemo done soon.

Lily_Pad_Master profile image
Lily_Pad_Master

Congrats, Anne! Always a great relief. Enjoy the respite. I just started treatment after what reads like almost the exact same scenario, only about a year ahead of you. I'm doing great in a trial. Great response. To your health! Glenn

QuiltingGrandma profile image
QuiltingGrandma

Great news! Enjoy!

casanova profile image
casanova

Enjoy the reprieve!

Maureen UK

stunned profile image
stunned

Thanks everyone, i cant tell you the relief i felt, albeit short lived because i know treatment is coming.

Words from those going through or have gone through the exact same emotional roller coaster really mean a lot and give great comfort.

I still cant believe how many of us have this illness but it is never mentioned on any campaign for cancer, the usual bowel, breast, prostrate and children's leukaemia are all highlighted.

Supposedly it is the most common form of leukaemia in adults but seems to me to be dismissed somewhat due to it being " the best kind of cancer" to have, the words of the doctor who gave me my diagnosis.

I want it plastered on the sides of buses, on those enormous billboards and on adverts during prime time tv, because i want to get rid of the ticking time bomb i was handed nearly 6 years ago, with the words, "can't tell you when it will go off but have a happy life".

Sorry i am venting my frustration and before anyone says anything, i know there is a lot of research and new drugs coming through for this illness, but Joe soap public just don't seem to be aware of this illness, but everyone knows about breast cancer.

Will shut up now, and thank you all again for your support.

Anne.xx

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