Not what it turned out to be

[mdcupp6201]

Thank you all for your heartfelt messages and advice. When I joined this group a couple weeks ago, I thought my diagnosis was going to be completely different than it turned out to be on 10/06. It turned out to be CML. I'll probably remain in this group as it remains to be very helpful when dealing with any blood cancer.

[piggie50]

I’m so sorry to hear this. Are you able to start on any medication?

Very best wishes

Judy

[mdcupp6201 in reply to piggie50]

I go today to see my hematology/oncol doctor to come up with a plan after reviewing results of my bone marrow biopsy and ultrasound. She will determine from there which of the five medications to put me on. Hopefully in a few years, I'll be back on here celebrating a full remission. Thank you for reaching out!

[katiewalsh]

Dear mdcupp, unless you thought you had MF, it sounds like this new diagnosis is bad news. If so, I’m really sorry to hear this. I’m guessing it’s another rare disease. Can you find a knowledgeable specialist to work with you? I sure hope so. In the meantime I’m sending you positive thoughts for strength & calm and a bunch of big hugs. Please take good care of yourself! Katie

[mdcupp6201 in reply to katiewalsh]

I thought I might have MF after doing the dumb thing and researching the internet based on symptoms without getting a diagnoses first. I didn't want to be totally in the dark and blindsided. CML is Chronic Myeloid Leukemia and there is no cure. It's not the death sentence it used to be about ten years ago. There are chemo meds that when taken over several years, may lead to remission. Thank you for the warm thoughts. It's still sinking in and I guess I truly haven't broken down myself yet. I'm trying to be upbeat and brave not only for myself but for my family.

[Tico in reply to mdcupp6201]

Hi mdcupp6201,so sorry about your diagnosis. When I attended my old Hospital,their was a chap there who also had the same Haematologist as me and he had been diagnosed with CML 28 yrs ago and he was told then he would probably not be alive in 5yrs time. He was taking Interferon and said he had lived life to the full,socializing with family and friends and still enjoying a drink. I believe he said he was only around the age of 24 when diagnosed and to look at him you wouldn't have known he'd had it that long or even that he'd got it!So I hope you follow the same pathway with your diagnosis. Warm wishes,tina.x🤗

[tracey13 in reply to mdcupp6201]

Hi my friends aunty was diagnosed with this last year she's doing brilliant on the medication.

We are all so thankful for medication .

My husband as MF we just praying it doesn't progress to AML .

TRACEY

[jillydabrat]

Good morning my lovely

What a blow you have been dealt! What have they said to you about treatment?

You have been steered down a different path but you must still live your life to the full.

My best advice is this. Don’t try and take all this on yourself. If you are having a bad day then don’t hold it it. Don’t keep saying to family and friends “I am okay” because within no time at all you will feel so overwhelmed. Your family will not be expecting you to protect them by not talking about your condition, in fact, the more you say “I feel fine” the more they will shy away. Let your family walk this path with you so you are never lonely and they never feel pushed away.

We are always here to talk to as you know. So please live life to the full, laugh at life’s stupidities, shout when you want to and hug all those you love every day.

We are all sending our love and prayers

God bless

Jill

xxx

[mdcupp6201]

Thank you for the very warm reply. I truly haven't let this sink in yet. I guess at some point, I'll sit down somewhere and have a good cry. I am blessed that the drugs that are out there now even though very expensive and can cause serious side affects, could ultimately keep me alive and possibly go into remission in a few years. I am exactly to that point where I am telling everyone I am fine when in reality, I'm very tired, angry, sad, confused and worried that I won't be around to be with my family or see my baby grandson grow up. It's still early in my diagnosis and treatment but it's still hard being so active and healthy to this. I'll know more when I go to my doctor today to come up with a plan after going over the bone marrow biopsy and ultrasound results. Thank you so much for reaching out!!

[ChelseaF]

I’m so sorry about the diagnosis. Thank goodness for the advances made in recent years. I hope you find the medication that works best for you quickly, that you tolerate it well, and go into remission. Best of luck. ❤️

[mhos61]

Sorry to hear this news mdcupp6201.

I hope your haematologist is able to put the best plan of action in place for you.

I ‘think’ (read somewhere) that advancement in drug therapy in recent years has been very positive in the prognosis for CML.

Keep us updated

Mary

[babbittybumble]

Hello .Just wanted to wish you well for when you start your treatment.Take care Gill

[Lifam]

Please don't be despaired, there are always new treatments, it can be treated. Love and hugs xxxxx