39 replies to this topic

[pammartin]

Scuba,

Thanks, I have followed your journey since I began posting on here. I need to go back and read everything again from Pin also, I got lost in the laughter when Pamsouth said she had CML 200 and Judy finding it.  Add that bear that I thought was racoon to the day and I can't focus for nothing.  Sat up half the night trying to get better photos, LOL  I will read and respond in an intelligent (or as best as I can) manner.  Thanks everyone now to sort out the serious from the funny!

[Judy2]

Hi Pam M and Billie,

Pam, how is your angioedema today? I am hoping you will be able to lower your dose of Sprycel at some point, it is miserable to be swollen. Will talk to you later.

Billie, Please do not worry about the increase in your wbc, easier said than done. This has happened to Pam M and myself as well.I am sending you a personal email.

xo,

Judy

[pamsouth]

Billie,

I don't see your GFR, BUN & Creatinine, that would have to do with your kidneys.  That would come under Comprehensive Metabolic, do they list that?

Other then, you might want to watch your RBC & your HGB, that they don't drop to low, they look pretty good. 

I like mine CBC as close to normal as they can be. If they are just riding  a little high or little low, on the range, written to the right. I am a pretty happy camper.

For example your RBC were 3.4 to to 3.5 pretty much stayed the same. The normal range on my lab paper work is 4 ? 5.4, yours normal range may be different, look to the far right and you will the standard range.  So your RBC is just a tad lower then normal, for me I would be happy with that.

Your HBG WAS 11.0 then dropped a little to 10.0, normal on my lab paper is 12 ?15.

Your HCT WAS 35.5 then dropped to 32.9, normal on my labs reports is 35-49.

Your HBG & HCT dropped just a smidget lower then the normal and lower then your previous report.  I would just watch that they don't drop to low.  That is when I get a little worried when they all drop low like my RBC, HBG, HCT.

However most doctors don't worry if you ride a little on the low side, if they drop to low, they may give you iron pills or something. 

From time to time mine CBC counts drop a little bit low, but usually they come back up where I am just riding a little on the high or low, of normal range.

WBC 4.5 TO 8.  Normal range is 4.5 11.5.  I would NOT worry about the increase, as you could be fighting off a little cold or allergy or something.  WBCs help your body fight infection by protecting against foreign invaders such as bacteria and viruses.  Remember even CML white cells still do their job although probably not perfectly as a normal cells. But they are mature cells not immature like a blast or acute, CML cells do function. 

All in all I would say your labs look pretty good.  Again I would just be watching, they don't get to low, but I am not a doctor, and you are a unique person on a different drug with different circumstances then me. 

Again when my counts start to get a little low, I notice usually on the next labs the counts are back up closer to normal range.  I think sometimes our bodies may be adjusting to a cold or something so counts tend to fluctuate some.  I just don't like it when I notice several of the counts continually going below a normal level, then I keep my eyes open.

Like I said so far when my counts get a little low, they come back up closer to normal.  Again most doctor don't worry if the counts ride a little below normal.

Usually low counts are aside effect of the TKI. I was always told TKI only killing bad cells (not counting the side effects issues).  When my WBC got down to 1.7 I said hey doc where are the good ones, she said you don't have any.  But sometimes I wonder did we really have to let my count get that low.  I am a little bit to old, I think, to do that agian!!

When first diagnosed, and on TKI's, usually they let your counts get all time low, then i went off to the hospital for IV of antibiotics,  then off meds until they start to come back, then low dose until they get closer to normal range. Hopefully the healthy stem cell will have populated as CML is suppose to be slower then the normal or good cells.

Actually hind site, I wouldn't let mine counts get that low again.  My white cells got to 1.7 and my blood pressure dropped 60/30.  Actually it scared the doctor, too.  Have low counts can leave you open to virus bugs etc. 

I think the younger people are more resilient.  We took care of my mom for 3 years before she passed away.  When i moved her down here with us she was on so much medicine.  I took her to my doctor who said no one knows how all these medicine works together.  She was a mess. I took her to a geriatric group and we weaned her off a lot of med's and lower doses. 

They said older people can only take child like doses. 

My husband got so bad a couple years ago at the of 69 years old.  I was bathing him and feeding him, as he had swollen up so bad, and could barely stand up and couldn't use his hands.  I was taking him to multiple doctors.  He was taking so many med's and no one wanted to take him off any med's from his primary doctor.  Well I finally said he is dyeing on me anyhow, or at least killing me, taking care of him.  I weaned him off most of his med's and he went to physical therapy, and he has been working for over a year now, 32 to 38 hours a week.  It turned out He was allergic to the arthritis medicine a generic of Mobic, Molaxicam or something like that.  Then the primary doc added all that other medicine to the arthritis medicine like pain pill, neurotic, predisone, etc.  Then my husband went straight down hill.  Now that he is off the meds and working, He said he would rather live with the arthritis, then take all those meds, that make him dopy & helpless. 

He controls his diabetes and blood pressure by walking and diet.

Of course we are dealing with CML which is a different beast.

I like Scuba theory and it is working for him and others.

Also Trey put out a good thread, about doctors changing their theory, on 400 mg Gleevec and side effects. Dr Druker has said it is Ok with lower dosage as long as they maintain a minimum Gleevec plasma drug level of 500 ng/ml. That resistance is probably there from the beginning stages of CML. .Hard for me to remember exactly what he said, you probably read the article it was a couple days ago . 

Look pretty good to me. 

Have a great week-end, Pam

[pammartin]

I need to read all these posts, edema is still there, bit the bullit and have the steroid.  Billlie, I need to send you email, my white count was almost 13 about 6 weeks ago.  two weeks later it was back to 5.1  will touch base ASAP

[pammartin]

Billie I shoveled that damn stone again yesterday and still only made a dent!  it goes on forever......

[Judy2]

Hi Pam M,

Did you say you started your steroids? Don't be surprised if you have really weird dreams. When I was on a high dose of prednisone I had strange dreams for the first couple of weeks (I don't think you will be on a high dose for long, though). One night I had a dream that I was in a Chinese restaurant and was being chased around the restaurant by a waiter with a spoon. He was using the spoon to try and catch me as if it were a butterfly net. Also, had a craving for honey dipped munchkins all the time. Pam, as I writing this I'm thinking that perhaps you shouldn't take your Ritalin while you are on steroids. The two together might be too stimulating. Just a thought, they are few and far between these days.

Hugs,

Judy

[pammartin]

Hey Judy,

Ritalin is off the table while the steroid is on the menu.  Thanks for the note though, just in case.  I am set up, feeders are filled, feeder frame is 10ft closer to the house and camera is full of batteries.    I am ready!  I have been hyper/nervous all day, I blame it on the steriods.  Three days of high, then three days of medium and three days on low dose.  How long will it be if you have a guess before I see any reduction of the edema?  I know everyone is different.  Today is has been weird, hardly anything below the eye but my eyebrows and eye lids are really large, the eyelids are laying over on themselves, I would blame it on wrinkles and age but it wasn't that bad a few days ago.  Hope you are having a good day, you need a check list, bathing suit, check; house plant, check; video of gorillas at Pittsburgh Zoo, check.   (Stop laughing I know you are!)

[Judy2]

Hi Pam,

When I was in the hospital with fluid from my kidney problems it took one week on massive doses of steroids for the swelling to go down. With the angioedema it depends how bad the swelling is and also I combine my steroids with Allegra and sometimes Benadryl so I'm not sure how long yours will take. Regarding the gorillas, your story kept we up all night, I felt like I needed a cigarette!!! YOU ARE RIGHT, I CANNOT STOP LAUGHING!!!

I am hoping we can talk tomorrow, I need my Pammie fix.

Hugs,

Judy

[hannibellemo]

Billie,

I felt the same way at my previous to last blood work. My WBCs and platelets had doubled and I was sure that I'd been off Sprycel too long and they were on their way up. On Friday everything was back to low normal - go figure.

Sometimes we just have blips! You're fine!

Pat

[pamsouth]

let see it is 12:22am so that would be a good morning.

Getting reading to sign off, but had to check in with you.

I like how creative you are like "-Hey say Pat,Pam,Pin,Pam,real fast 4 times!""

I think you should give yourself a lot of credit for just reading all our post and coming up with "taking sinus med's decreasing meds, changing meds"  Lots of things can cause are numbers to jump around.  I don't get to nervous anymore like I did that first years.  Pins and needles everytime I got my labs, thought I was going to die.  Well it's been almost 7 years now on Gleevec and I am still kicking around. 

Seriously there are somethings that still make me a little nervous.  But my numberers jumping around a little, with in a certain range, I am use to.  I think as time goes on we get use to what might be out of the norm for us.

You still want to check your numbers, doctors are human and they do make mistakes.  I don't say that around my daughter and son-in-law as he is a doctor and she is an RN.  however being a caretaker for my mom for 3 years and others, I have learned to pay attention and when the red flag goes up, I'm am on my toes.

Billie we are lucky we have this board.

http://www.bluemount...me/card-3170178

PRAYERS & HUGS XOXO

I love you guys,  Prayers always, hug xoxo

[pammartin]

Hey Billie, sent you an unedited version of todays event in CVS parking lot.  Judy and Marnie have it also.  No good/bad this time so Ron won't consider committing you again, but use the restroom first........do not say you have not been warned

[pammartin]

Billie

Bob and Nick are tiptoeing around the house.  I believe Bob was hoping doc would taper me off starting today, I called like I promised, she wants me to continue, we still don't really know why the swelling is there, so tomorrow I should be less of a psycho because the dosage begins to lower.  I did notice one thing today, I have two refills on the bottle, if I have to do this over a period of time, I cannot promise someone is not going to be destroyed.  I had better start my defense ideas now.  Although it isn't funny I had to laugh about your puffy eye story and I can relate.  The right eye is worse than the left, if I lay my pinkie across the white fluid filled sack under my right eye I can still see the darn thing on three sides, I tried to move it around just because you said you could and I can't resist an opportunity, but it really didn't want to be anywhere but where it was.  Hopefully it will begin to go down soon.  Like you by the afternoon it is not so bad, but I am sure it played a large piece of my over all appearance of an escaped convict who has serious anger and control issues yesterday.  I thought of going to buy one of those cold masks, if nothing else I could put strings on it and wear it outside, then instead of escaped convict with anger and control issues I could pretend to be the newest member of the Avengers!  I think they sell them in a peaceful blue color all I need now is an outfit to go with my new image.  Oh how the mind wanders........

[pammartin]

Since I struck out with having the steroids lowered, I am going to add the water pill.  I will wait till the steroid runs the course, 6 days and counting, tomorrow I might be semi fit to be around, it is a much lower dose.  I went to a little get together this evening, first time I have been out in months after 6 p.m.  We laughed, verbally beat up a few people, and then drank some wine.  It was a nice evening.  I have everyone all convinced we should do the wine walk May 18th, to make sure a few are going I am headed out tomorrow to get their tickets so they are obligated to go.  I have only one rule from Bob, he does not want to read about us in the paper the following morning.  Think I am safe, he leaves here about 2:30 a.m. so the paper won't be out till long after he is at work.  

Swelling is much worse in the morning hours by afternoon it is still present but less noticable.  Still trying to figure out the difference between the edema and basic swelling, because edema does not go away as the day progresses (learned that from Judy)  My journey continues

[Headi]

PamM,  I know what you mean about an onc you can talk to. I've had that same problem for 3 years and finally got a recommendation from a hospital radiologist and made a change.  I'm so glad I finally did.  A dr. who will talk to you is worth 20 so called cancer geniuses. As far as the swelling goes, the suggestion of a diuretic is a good one. It should help as much as steroids and be safer.  Just be careful of your potassium and magnesium levels. I wasn't prescribed them along with the diuretic and my potassium level went too low and caused a heart problem.

[pammartin]

oh crap, isn't it great we trade one effect for another and then just add a pill?  I hope you had a positive recovery from your journey with the diuretic.  I have taken them on and off over the years, doc always did a PRN for me, last year when my son and I went to Florida I thought my ankles would burst.  They were huge, but not one problem all last summer.  Water retention is difficult, there are many reasons for it to happen.  I will wait out these blased steroids, then hit the water pill.  I used to have labs drawn every week, but have went down to about 4 weeks now, I have had to take potassium and magnesium just a few months ago because they were low.  I still have those scripts also.  Nice to have my own little pharmacy going on  Thanks for the info Headi, appreciate the thoughts.