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Diagnosed with CML in September, 2017

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My husband Tim (46)  was diagnosed with CML September 2017 on a chance blood test for a completely unrelated issue.  To say we were shocked is an understatement.  3 months later we understand more but sometimes you feel like your drowning.  We are so thankful for the TKI he is on, the projected outcome but right now is really really hard.  He has been hospitalized 3 times now with UTI and kidney infections and  we are 3 1/2 hours from the nearest hospital that can do bloodwork.   I am incredibly fortunate to have friends to take over our kids when we are gone.

We are all tired, especially Tim.  I feel guilty when I say I'm tired when I have no idea what he is feeling.  We cry, laugh a lot but this has driven our family even closer than ever before.  Our two kids Neil,11 and Jane, 10 have taken this really well but are obviously concerned and very upset every time Tim is airlifted up to Glasgow.

We have just now started really looking at this site as we have just been too tired and overwhelmed to take on anymore right now.  Just looking at 6 testimonies on logging in has encouraged us immensely!  We look forward to meeting some of you, learning and sharing.  His blood counts are really low right now, boardline neutropenic but finally he said last week he feels like he has a bit more energy.

Thanks for reading and listening.  It is nice to know we can directly talk to people who actually have CML, or family/friends that are going through it.

Michelle

Hi Michelle,

I'm really glad you found us! If it's any consolation, I found the first six months or so the hardest, especially the fist three ... notwithstanding medical issues, the hard yards in the head are in the earlier days I think.

Keep an eye on the blood levels, sometimes the TKI can work "too well" and give issues like neutropenia - many of us here have been through all of that and can offer advice. If you feel comfortable, share test results if you want other patients' opinions.

As you've probably found, you don't meet many people "in the wild" with CML, so here is a great place to chat, learn or get a load off your chest.

David.

Hi michelle,

we had the deal with several UTİ 's in first 9-11 months . but after her PCR result get below %1 , everything get better . i wrote a post here

https://www.cmlsupport.org.uk/thread/11381/18th-month-pcr-result-blip-an...

but more detailed version of it . 

24/08/2015 UTİ  --- unaware of CML

28/09/2015 UTİ  --- high wbc Suspicion of leukemia

28/10/2015 After PCR result -- started imatinib treatment 

23/11/2015 for 2-3 days vomiting , nausea , lost of appetite  ( mom didnt want to go hospital , and i thought it was because of glivec )

from october to february , the 3 symptoms lasting 1-2 days for 1 or 2 times. no hospital no blood-urine work

16/02/2016 UTİ - ringed a bell 

Urinary Tract Ultrasound - a few kidney stones but not too big to cause UTİ 

28/02/2016 feeling not good for a 2 days 

01/03/2016 boom UTİ again 

16/03/2016 neutropenia 1 week off imatinib

26/03/2016 UTİ - doctor wanted CT scan we skipped it . lasting more than 5 days

20/04/2016 UTİ  lasting more than 5 days

26/06/2016 UTİ this was our last serious UTİ 

09/2016      UTİ CT scan showed no cause of UTİ

from 09/2016 she had only one or two UTİ but lasting one or two days and not serious( less vomiting nausea etc )

 

My mothers symtomps was just the holy three ( vomiting , nausea , lost of appetite )  --- kidney - acute pyelonephritis i guess.

no pain when in urining or going wc more often none of the other symptoms.

 

And i think you should read this 

Urinary Tract Infection (UTI) in Males

https://emedicine.medscape.com/article/231574-overview

 

Doctors ( hematology , nephrology ) told us didnt see any problems in CT scans or USG . it was just an oppurtinist infection .

 

best wishes to both 

 

Hi Michelle - and Tim, welcome to this forum. It is very hard at first and I do feel for you when say you are not near a clinic that can take blood. I would recommend that Tim tries to drink as much plain water as he can - preferably alkalized with a little (1/4 tsp) sodium bicarbonate in an 8 oz glass- as much as he can throughout the day.  It will do no harm and will certainly help his kidneys deal with infections etc.

Sandy

Hello I too was diagnosed around the same time. Late August 2017. A week before my 37th birthday. My wbc is low on last checkup. 2.8 which is not in the normal range.
I don't think I have an infection keeping it low though as I have no fever or other signs of discomfort.

I agree that this brings family closer together. It has strengthened my faith as well. I too have kids (x3) and try to stay upbeat for them and keep going to work as normal (some days are a little tougher than others).

This site is great and you will learn a lot about what the numbers mean and what questions to ask your oncologist.

Take care and you will be in my prayers.

Sorry I replied to your post in Sandy's reply as opposed to here. Please see reply below as we were diagnosed pretty much at the same time.

Hi Michelle and Tim. We're on that same journey with you! Mark was diagnosed late November 2017, just a few days before his 47th birthday. So sorry to hear of the UTI complications and your long distance to the nearest big hospital!! Nightmare! We feel incredibly lucky to live a very short journey by car from the hospital. Our best wishes to you and hope 2018 brings better things XXX

Thank you so much for such a thorough response!  I would have responded soon but he was airlifted up the road yet again with a UTI/kidney infection.

Since then they have performed a cystoscopy and everything was all clear.   I am now going to delve properly into what you sent me!  Thanks so

much!