17 replies to this topic

[Usurugger]

Hello all, Seems I am destined to join this club as well. 46yo very active man. Had a routine blood draw a week ago for a physical and low and behold a white count >32K. Still trying to get over the shock as I feel great.

Might have a bit of impact on my activity from reading the boards (and by the way thank you all as I had many of my initial questions answered quickly looking at the frequent posts).

Just a quick question, I have seen an oncologist just a few days ago, only had peripheral blood sent for FISH and PCR but he seems to be 96%(how to figure this I am not sure)  percent sure it is CML.

Sent the blood to Mayo for eval and should have some results tomorrow afternoon.

Problem is that I have a spring break trip to Costa Rica with my sons (biking,hiking, kayaking ect) set to leave on Sat for about a week. did a repeat CBC today with a myelocyte percentage of 10% from my lab.

All my lab work from Oct 2011 was normal and only recent illness was Mid Feb with a "viral type" syndrome for about a week.

What do you think my changes are of tipping over into an accelerated phase being at 10% (which seems to be the cutoff on the phasing). Think it is safe to take the journey?

Would welcome your thoughts.

thanks

[pammartin]

Hi & Welcome,

I have to admit have no idea how to answer your question except from a 'gut instinct' and that would be GO!  Have a great time, it will probably take a week or so to get your meds, mine took two weeks, and I can honestly say I would rather have been sitting, hiking, biking, zip lining, or whatever in Costa Rica than waiting for the UPS truck to appear. 

Pam

[janne]

I vote with Pam.

[Marnie]

When I was diagnosed 3 years ago, I got my doc's permission to attend dirt bike camp a month later, as long as I could get my white count down to a reasonable level (from 233K)  I had a blast at the camp and then proceeded on to a 3-week motorcycle tour, camping every night off of our road bikes.

As long as you get your doc's o.k., go to Costa Rica. . .and be sure to kayak the Reventezon and the Picuare.  We were down there about 20 years ago and the kayaking was fabulous!  We were based in Turrialba, which at that time, was the kayak capitol of Costa Rica.  Be sure to visit Manuel Antonio.  I didn't get to see it (had to fly back to get to work) but my husband stayed an extra week and said it was worth seeing.

Marnie

[CMLSurvivor]

32K is catching CML pretty early on.  I would say go and have a great time. Some of the tests they do take about 2 weeks to come back with the results. While your waiting for your test results you might as well go and spend time with your family and enjoy life!

[Marnie]

P.S.  We also did some ocean surfing in our whitewater kayaks. . .can't remember if it was on the Pacific side or the Carribbean side. . .talk about intimidating!  The waves were HUGE!!!  I got pounded in the surf!  Remember to exit your kayak on the ocean side, not the beach side (duh).  We just ran into a guy from Costa Rica last night at the T-Mobile store and chatted with him for quite awhile.  He commented on the zip lines that are in the rainforest. . .don't know where, but I'm sure it's a huge tourist attraction. 

You are going to have a GREAT time!!  IF you have started your meds (depending on the med) be prepared for bathroom issues. . .difficult in a wetsuit. . .oh yeah. . it's Costa Rica. . .no wetsuits!  We have COLD water here in Colorado. . .but we wore shorts and PFDs in Costa Rica. 

I'm getting excited just talking about your your trip to Costa Rica. . .can I come, too???  (Kayaking in Ecuador is pretty awesome, too)

[CindyS]

I agree with Pam.  I don't know enough to respond "medically", but it does typically take a while to get the necessary approvals and then get the drugs so I say go!  I too was diagnosed after the blood work from a routine yearly physical showed an elevated wbc.  I tell my husband I felt great until they told my I was sick!!  My wbc was 44 and I had already scheduled a cruise in Hawaii.  I had my first appt with the onc on the Friday before I left and scheduled my bone marrow biopsy for the Wednesday after I returned.  I will admit, it probably wasn't the best vacation I ever had, but I am glad I went.  It was a trip with my Mom, sisters and all our children and grandchildren and I didn't want to say anything to anyone and ruin the trip for them too so kept it to myself the whole trip. I had the bmb in late July and got the results on August 5.  I had a consultation at the Mayo Clinic in Phoenix to discuss my options on August 29th and started on Gleevec September 12th.  My wbc went up to 76 the week before I started the meds, but that's still not as high as some people here when they were diagnosed.  So I think catching it early gave me more time to make my treatment decisions.  I'm responding really well so far so the wait doesn't seem to have affected anything negatively.  I have my 6 month bmb scheduled for Friday and I'll know for sure how I'm responding.  The side affects from the meds can be difficult for some people too, especially in the beginning, so that's another reason to go on this trip while you're still feeling good!

Good luck with everything and have a great trip if you decide to go!!

Cindy

[Pin]

Hi Usurugger, welcome

Your 96% could be a FISH percentage, or a PCR score (probably a FISH I would guess). When are you starting treatment?

Also, is a myelocyte a "blast" cell? I haven't heard this terminology before.

[Usurugger]

Thanks for the advice all, definitely time I need to spend with my sons...can't recapture those times with doubts later.

@Pin: I think the 96% was a SWAG (Silly Wild Ass Guess) as I had just had my blood draw about a 1/2 hr prior to our discussion.

@Marnie: If I had a suitcase big enough, would take everyone. I have been looking forward to this trip for several months as it is allowing me to introduce my sons to some adventure travel (age 15/12) and the things that I love. You sound like you have had some great experiences. How has treatment affected your being able to get out and about?  I am right in the middle of the 7 Summits Challenge, summitted Kilimanjaro (Africa), Aconcaqua (Argentina), Elbrus (Russia) and Denali (Alaska) in the last 6 years. Was planning on some other climbs above 14,000 ft  and Mt Vinson (Antartica) next year but those plans may be on hold for a bit. Not sure there is much literature or studies on CML at altitude .

@Pammartin, CMLSurvivor, janne and CindyS: thanks for the vote of confidence, I will go with the gut instinct and have the time of my life.

[Susan61]

Hi:  Let me welcome you to the club that nobody likes to join.  I would go take the trip also.  I was diagnosed through a regular yearly blood test back in 1998, and mine was caught early with a WBC of 18.  What everyone is telling you is fact.  By the time you get your results and then get started on your medication you will be back from your trip, and glad you went.

You will get all the information you need from all of us.  You will find we are all on different types of TKI drugs, and what works for one does not necessarily work for another.  I have been on Gleevec since Oct. of 2000, and it has been a real miracle drug for me.  You will hear from others and their experiences also with what they have been taking.

Just know it is a treatable disease now, and nothing like the way it was years ago.

Have a great time this weekend.  Hope to hear from you soon.

Susan

[Susan61]

Hi:  Let me welcome you to the club that nobody likes to join.  I would go take the trip also.  I was diagnosed through a regular yearly blood test back in 1998, and mine was caught early with a WBC of 18.  What everyone is telling you is fact.  By the time you get your results and then get started on your medication you will be back from your trip, and glad you went.

You will get all the information you need from all of us.  You will find we are all on different types of TKI drugs, and what works for one does not necessarily work for another.  I have been on Gleevec since Oct. of 2000, and it has been a real miracle drug for me.  You will hear from others and their experiences also with what they have been taking.

Just know it is a treatable disease now, and nothing like the way it was years ago.

Have a great time this weekend.  Hope to hear from you soon.

Susan

[Susan61]

Hi:  Let me welcome you to the club that nobody likes to join.  I would go take the trip also.  I was diagnosed through a regular yearly blood test back in 1998, and mine was caught early with a WBC of 18.  What everyone is telling you is fact.  By the time you get your results and then get started on your medication you will be back from your trip, and glad you went.

You will get all the information you need from all of us.  You will find we are all on different types of TKI drugs, and what works for one does not necessarily work for another.  I have been on Gleevec since Oct. of 2000, and it has been a real miracle drug for me.  You will hear from others and their experiences also with what they have been taking.

Just know it is a treatable disease now, and nothing like the way it was years ago.

Have a great time this weekend.  Hope to hear from you soon.

Susan

[Susan61]

Hi:  Let me welcome you to the club that nobody likes to join.  I would go take the trip also.  I was diagnosed through a regular yearly blood test back in 1998, and mine was caught early with a WBC of 18.  What everyone is telling you is fact.  By the time you get your results and then get started on your medication you will be back from your trip, and glad you went.

You will get all the information you need from all of us.  You will find we are all on different types of TKI drugs, and what works for one does not necessarily work for another.  I have been on Gleevec since Oct. of 2000, and it has been a real miracle drug for me.  You will hear from others and their experiences also with what they have been taking.

Just know it is a treatable disease now, and nothing like the way it was years ago.

Have a great time this weekend.  Hope to hear from you soon.

Susan

[LivingWellWithCML]

Definitely go.  I was diagnosed a year ago with 155,000 white count, and I took my family on our planned Spring Break trip one week after diagnosis while I was on hydro (oral chemo drug to knock down the count while I waited on bone marrow biopsy confirmation of Ph+ and Chronic Phase).  I also ran every single day while we were at the beach ... albeit, a bit slower than usual, since my hemoglobin levels were lower.  Slower running is actually what prompted me to go to the dr. for a blood test.  Wow.

Have a great time ... as you'll see from so many here, when you get started on treatment, then you'll get this thing under control quickly and continue your active life...

[Marnie]

Wow!  Now those are adventures!!  I would love to see Kilimanjaro. . .although I'm not interested in that kind of intensive climbing.  That's a huge time committment. . .and for me, I don't think the "work to fun ratio" would work out.

We had quite the adventure in Costa Rica when we found ourselves on the Reventezon River after the sun went down.  Paddling a class IV section of a jungle river we didn't know in the pitch black.  Luckily, we found the take-out, or (as we found out later) we'd have gone down a class VI rapid that would have killed us and washed our bodies into the ocean!  We've also paddled through a forest fire --the 2000 fires in Idaho--flames 360 degrees around us (and that was the day after the bear raided our camp and tore holes in our tent).  They shut down the river and evacuated all of the groups behind us by helicopter, but we were too far in.  So we spent the night on a sandbar under a rocky shelf while the fire went by us, and then paddled the last 5 days through smoke and ash so thick you couldn't see 100 feet in front of you!  If you haven't paddled the Middle Fork of the Salmon River in Idaho, it's a must do, though permits are difficult to come by.  We've paddled with raft support and self-support many times.  We've also paddled the Grand Canyon twice. . .now that's a fun trip!

Lately, we've gotten so obsessed with motorcycles that kayaking has kind of gone by the wayside for us.  I guess that's o.k. after 20+ years of paddling.  We are looking forward to this summer. . .hopefully will get in a 3-week road trip through Colorado (we have great twisties out here), camping off of the bikes, and then also a more comfortable trip with our camper and trail bikes. 

I look forward to hearing about your Costa Rica trip.  The first motorcycle trip we did after diagnosis had some uncomfortable moments getting used to the med (Gleevec) and how it affected my body, but overall I felt fine.  I'm on Sprycel now, and aside from fatigue (which I refuse to give in to), my life continues pretty much as it did before. . .motorcycling, snowboarding, hiking, kayaking, etc.  I guess the biggest way that cml has changed my life is that I don't sweat the small stuff any more, and life is a much higher priority than work. 

All the best,

Marnie

[70dodgesuperbee]

Best wishes for you and your family.

I am the widow of a Vietnam veteran.  My husband was first diagnosed in May of 1984 with a WBC of 600,000. ( He had gone to the hospital after my nagging him about a swelled up ankle he had for a few days.  He could not remember hitting it with anything.)  When  drs. ran tests, they would not let him go home right away, until the diagnosis for CML was confirmed.

The treatment for his CML in those days was in my opinion, was pretty limited, or inneffectual.   He took pills for about 6 months.  His doctor had discussed the possibility of a bone marrow transplant.  The chances of success were very low.  My husband turned it down.  toward the end, he had radiation treatments to his spleen , followed by blood and platelet transfussions.  He did not last long.

From what I have read, the treatment for cml  is more advanced these days.  My husband was 39 years old when he passed away on June 14th 1986.  It was the Sat, before Father's Day of that year.   My children were very small (7, 4 and 2 years old).  They never got a chance to experience simple excursions with their daddy. 

So, I have shared that with you so you know that I am qualified to advice  you,  to live life to the fullest!

[luvmybees24]

My WBC were 32 at dx in November 2011 and they were 7 within a month of Tasigna. I never felt sick ever except for a small virus I got 2 weeks after diagnosis. I say, GO. 32 is not that high. I would double check with your doctor and be careful about drinking any weird water, etc because your immune system is compromised now. (don't quote me on that, I'd double check with the others but that's what my dr. told me at diagnosis) Go and live life and have fun! This is a VERY survivable disease. It was caught early (it sounds like) and you will be probably respond great to medication.