2 mths ago told I had stage 4CLL from Canada

[234me]

Recently diagnosed with stage 4 CLL. What a shocker. Left side has been hurting last 5 yrs however, thought it was only bowel problems and took more enzymes and roughage. . Even had a colonoscopy, but found nothing and no one thought to check my white blood cell count. I was Tired but still was doing all normal activities and walking 5km ayear year ago, now cannot do that as fatigue very severe and left side pain was found to be a spleen the size of a melon and liver also enlarged. Night sweats .

White cell count way off charts.202 x 10. Bone marrow biopsy showed 97 % packed with leukemia. So started a flurry of web searching and found lots of info.

Got a pneumonia and shingles shot a month before taking chemo pills.

So this week started fludarabine tablets, 6 a day for 5 days, 60mg total.

Then start in nov immunotherapy rituximab intravenous.

Dr is great and he is giving low doses and slowly introducing all treatments as we do not want kidney issues and all those other issues from so many of those darn leukemia cells dying etc.

I also have acute porphyria so management of drugs a great concern in order not to give me an attack.

However, through all this, I am happy, positive, and carry on . I was never angry but had a few tears and then dug for any info I could find. I have folders galore that I take to the dr office during my visits.

This is my destiny which ever way it goes. A journey I never expected to take, as I exercised am very fit and ate healthy food ,very little junk food. Made all my own bread, never ate out in restaurants etc.

Life is good. I am 63 yr old.

.

[Newdawn Administrator]

Well done you (or should I call you me) on your focus and positivity!

Hope your treatment continues to go well and that you achieve a very long, successful remission.

Warm best wishes,

Newdawn

[234me in reply to Newdawn]

tks

[234me in reply to Newdawn]

Hope you are doing well also.

[sam-sam]

hi, 234me,

best wishes on your journey to remission! Life is good but sometimes...one can question that.

Many people will tell you that this community will be very supportive, you can "air" anything, most, if not all, questions will be answered.

I will "follow" you on what I hope will be a journey with a positive outcome.

Betty. (Ireland).

[234me in reply to sam-sam]

tks

[Cllcanada Top Poster CURE Hero]

Hi, welcome and all the best with your treatment...

watch those fludara pills they are tiny and like to jump out of the package and under the stove...

Happened to me twice, so I opened them over a mixing bowl...

What province?

~chris

[234me in reply to Cllcanada]

BC, vernon

[ap64]

Glad u seem to be coping well. Hope the treatment regime isn't to rigorous. Keep us posted. Can't believe your Dr didn't do annual blood tests and see you lymphocyte count or did it jump from normal to off the chart in one fell swoop.

[234me in reply to ap64]

In Canada it is difficult to find a GP family doctor, so I just went to walk in clinics rarely , The few times I went to a walk in clinic there wereso many people in there with things that could have been fixed at home . So there are 3 hr waits or in my case when I went in at the beginning of all this, I sat on the floor outside the walk in clinic for an hr waiting for the doors to open. This is common site through out canada. People bringing lawn chairs to wait out side walk in clinics doors. I felt like I was in a third world country.

I don't have a base to know how fast the white blood count went up.But within the last 2 months it has risen from 176 to 204x10.

Diagnosed, at a walk in clinic in BC canada, as I had asked for a complete blood count and tests and the young dr will willing to do that for me. It came back as leukemia and they got me into to see an oncologist within a week and the community care social worker got me a family doctor within 8 weeks. I feel very lucky with this family dr as he is wonderful and was willing to take me on as all the doctors in canada are overworked and there is a shortage .

The oncologist is great also.

So what is your diagnosis?

[Cllcanada Top Poster CURE Hero in reply to 234me]

Please ...every province is different, and I have never had problems accessing a walk in clinic in Burnaby or Vancouver...

Perhaps Vernon is under serviced...Healthcare in Canada is a provincial matter and it varies from province to province.

I have had a lot of interaction with all levels of healthcare in British Columbia and my treatment has been exceptional...

~chris

[234me in reply to Cllcanada]

Good morning,

I can send pix of 20-30 people waiting outside of walk in clinics in vernon,kamloops, kelowna. I can also give you names of people whom have waited for 2-3 hrs at walk in clinics here in vernon.

I did not say that the service was poor in fact I said that the service was good that I received from the dr. and medical services.

[sumok in reply to 234me]

in our experience chris, going to a couple of good walk-in clinics early in burnaby and coquitlam it seems there's a lineup of over 10 people by the time they open, and the one near us closes early fairly often when the doctors have seen their limit of patients. so you can get in, and the care is generally good to excellent, but you'll have a wait.

[234me in reply to sumok]

vernonmorningstar.com/natio...

This is from the newspaper clarifying what I said.

Tks for the truth, as I did live in surrey and the line ups were bad there also. But perhaps where chris lives in burnaby/van it is much better there. They are lucky people indeed.

I think we should talk about this and not pretend it does

not happen in Canada.

[ap64 in reply to 234me]

I am in Ottawa and am lucky to have a family dr but she is aging along with me so I get ur point. I am watch and wait for now but who knows when my CLL will light up So glad u have dr now. My friend's dr is leaving Halifax and she needs surgery and she doesn’t have a regular dr to turn to. She hopes the surgeon will phone soon.

[Cllcanada Top Poster CURE Hero in reply to ap64]

Hi ap64

Should you need a new GP in the future, Ontario has a programme that works quite well to connect patients with doctors receiving new patients...

Health Care Connect

ontario.ca/page/find-family...

Other resources in Ottawa are Champlain and Marie Curie... although there is a wait of 6 months or more to get assigned a family doctor, but the clinic is great.

uottawa.ca/health/registrat...

champlainlhin.on.ca/AboutUs...

I arrived recently in Ottawa and had a new GP in 3 days... I'm also a member of South-East Ottawa Community Health Centre.

seochc.on.ca

~chris

[ap64 in reply to Cllcanada]

Thanks for the info. Things are improving. My son in law was on rather list in Ottawa for two years before he got a GP. We are lucky in Ottawa at least we have a ton of clinics. Rural Canada and places like Nova Scotia are desperate. My niece is a physician at a hospital in small town Nova Scotia and there are so few doctors she can't even get away for her earned vacation. I really am glad I have a young haematologist and I hope to go the distance with him. He is French and a gem and I think he will stay in Canada and I am fluent in both languages so all is good.

[234me in reply to ap64]

Yes, a problem here in canada, a shortage of dr. Even now my new 2 dr say the same thing.

I did talk to the BC medical people "find a dr" But they could not find me a dr at all. So I tried .

But, it all worked out well. I got the best dr really fast with this diagnosis.

[Bubnojay]

Hi 234me

Wild applause even if you cannot hear me for the attitude with which you have dealt with this long overdue diagnosis. You would not be human if some reaction like a few tears 😭 had not happened. However, you have taken it on the chin and are already in treatment and it sounds like great care is being taken of you now. You deserve nothing less.

The fact that you exercised and ate well no doubt contributed to the fact you cope, and sadly why your doctor did not even think to do a blood test.

Huge best wishes for successful remission, do keep us posted, we are in your cyber corner, ready to provide support if you ever need it.

Onwards and upwards

Bubnjay1

[Elliot43]

Well done for taking it on the chin bit like I did? Altho I do remember rushing about clearing out all the clutter in the loft and trying to catalogue all the family photos letters and other archival material pertaining to the past family history etc. I had quite a good clear out. A little bit manic?

My chin got a little bit bruised later on though dealing with some of the side effects.. some long lasting ..of the chemo.

But three years down the track and I'm feeling pretty good. I eat well and excersise as much as I can gym, yoga etc. this is important!! Enjoying each day and who knows how much remission ahead. See and love your friends children, grandchildren as much as possible. Who knows what's ahead for anyone really.

All the very best to you

Sheila in oz

[234me in reply to Elliot43]

Tks, best to you also. A positive mind is the best.

[New-Attitude]

With concerns of your spleen, did you have any other symptoms. For ten years I have struggled with left side pain just under the ribs. I also thought it was. Peel related. They have done colonoscopy so and said all is good. I still struggle with issues with bowel irregularities but no reassurance about the pain. Only diagnosed in May and nobody has checked the spleen. My colography was done in August. I too feel like it is progressing but have t received that confirmation yet.

[234me in reply to New-Attitude]

Nope, just left side pain so bad at times, felt also like the ribs hurts also.

Had a colonoscopy 3 yrs ago, nothing found, so upped the roughage and took digestive enzymes which helped a little.

I broke one set of ribs and the other side ribs 4 weeks later so I went to a "walk in clinic" where I met a dr whom had went to school with my daughter. Thank god because he knew I was not a complainer and I asked for a complete blood work up, which showed the high wbc, then sent to oncologist, then they did a Scan showed the enlarged spleen/liver and all the rest for stage 4 cll

Good luck,

[duffymcgrif]

Hang in there. Do expect not to be able to do everything, as much, as you did before. Rest when your body tells you "enough". This blog is great. Allot of support and answers AND new questions for my Dr.