13 replies to this topic

[Tedsey]

Well, I am still CCyR, but my PCR has increased.  I went from .135 to .283  If I were MMR and had a bitty flux, I don't think I would worry so much.  As Sprycel has not been the miracle drug that immediately brought me to MMR, I am scared that this may be the start of us parting ways (been on the drug a year).  I am still within the 2 year mark for all the "lovely loss of response" living nightmare to happen.  I was soooo hoping to make it past the 2 year mark.  And I was so smug in thinking that my dropping PCR would be MMR after this last PCR and BMB.  Perhaps this higher PCR value is why my blasts have also increased?  I have also been getting terrible pains in my hips.  Hate to think these are the leukemic cells proliferating.  I believe the BMB report said there was an increase in CD34.  God, I HATE leukemia.

I had a mild anxiety attack yesterday and almost started crying.  Excited that I finally got the email from my onc, I expected the best.  The number really hit me like a ton of bricks, esp when my onc wrote, "Great!  It continues to go down."  She had mistakenly looked at 2 PCRs ago, (screw the positive attitude stuff, I am totally becoming a not-yet-elderly, female curmudgeon now).  I found out while I was at the hospital all day waiting for my husband to come out of surgery.  That was also major stress.  I so wanted to tell someone, but I couldn't get a good connection to the Internet on my phone.  My therapist doesn't understand PCRs.  I could not tell my husband after recovery.  That would be a tad insensitive.  But I was just about jumping outta my skin thinking "this is the end".  And I couldn't help but think all day that it was so weird not being the one in the hospital.  Coming from having babies to getting CML just after my second child turned 1, it seemed like I should be in the hospital bed.

My husband was moved to the orthopedic floor (he had shoulder surgery for a shattered anterior glenoid rim,--i.e. the front of the scapula--slipped on my 4-year-olds Jeep--WARNING!  Having children may be hazardous to your health).  Ironically, the floor also housed the "Oncology and Stem Cell Transplant Recovery" wing.  How is that for a bad omen?  It hit me like a ton of bricks when reading which way to turn after exiting the elevator (imagine foreboding movie music (or the screeching violins from Alfred Hitchcock's Psycho) playing while zooming in on the sign, then on me, then on the sign and sorforth..).  Left to the orthopedic unit, and right to oncology.  Again, it felt somehow wrong not heading to oncology (my new "normal").  But I turned left.  And I felt like an invader in the bone ward; misplaced.  I soooo wished I just had a broken scapula or leg.  I would take a life-long limp over leukemia.

I wrote my onc and asked if we should do a mutation test, but she suggested another PCR next month to see if a trend develops.  It is going to kill me to wait so long.  I checked my email like a maniac waiting for the the PCR results to come in.  To wait another month is going to be very hard (this reminds me of a song...skip to 1:29 on this video if you want or watch the whole thing, http://www.youtube.c...ch?v=fkLBVtFI3I I guess this is how we should be thinking about time.  Then we all shall all be able to live a long life.).

Anyway, I get that there can be a half log to 1 log margin of error (and as fuzzy as my math is, I don't believe my numbers increased by even half a log).  I don't think the lab changed its machinery, but I can check.  I am doing better today, but I just feel horrible.  I really thought I would see a lower number.  God bless this board and the LLS.  This is the first time I have been able to say anything to anyone.  Sorry this is so long.  I just have to get it off my chest.  Have been carrying it inside for over a day now.  I am so grateful for the LLS and all of my BIF on this board.

All the best to everyone,

Teds

[Tedsey]

Sorry Trey (if you read this).  I just now read your response to momruns.  I guess this applies to me too.  Phew, I think.

[CallMeLucky]

I don't want to make lite of this in any way, I know you were looking for the numbers to go down, but basically the numbers from this test and the numbers from the last are essentially the same.  I know stagnant is not what you want and I very much understand the anxiety and stress you are under.  However, from a reults point of view I don't think you are worse than before, you are pretty much in the same place.  You could have run two tests on your last draw and gotten these same numbers.  I'm sorry you are having such a rough go of it.  Try to hang in there.  I know you believe death is imminent, but that is highly unlikely.  I have read about people who went along for years being CCyR and never getting to MMR and they were alright.  It's just not easy for you, but that doesn't mean you are hovering the drain.  I hope the next test swings the other way to give you some peace of mind.

[Tedsey]

Thanks Luck,

I guess I was just really, really hoping to eventually get a reduced dosage of Sprycel.  I am on 100mg and the very, very, very low blood counts persist.  My dream was to get to MMR this time, hold it for six months, then go to 70mg Spycel.  Living as a hemopheliac is depressing.  I have hairy legs and it sucks.  And low neutrophils is distressing.  Just want my counts to get better.  Near normal would be ok.  But I am very happy for the increased HGB.  Makes life a little easier!  But I just want my normal life back.  I just so hate being sick and not getting better.  I stalled on G too, so this is very sad for me.  Sprycel is the most potent of the drugs.  I just expected better.

Thanks again,

Teds

[Trey]

Teds,

The more I learn about PCR testing the more disappointed I am in what a poor diagnostic tool it is.  There are so many variables in the process.  Essentially, you need another PCR to give you a better read on this.  The latest PCR is essentially flat.  It is very good news that you remain CCyR, so the hip pain is very unlikely due to the leukemia.  More likely the Sprycel.  So you are relatively unchanged from the last tests.  I would call it "stable", which is a good thing -- even though we all prefer great things.

[lehrerin]

Hugs Tedsey,

You have had a very rough couple of years.      Why is your onc so resistant to a mutation test?  It can be done on peripheral blood...........you know our story already---lab tests tomorrow, and IF PCR is above 0.001 we are looking at a mutation test AND a bone marrow biopsy ASAP--thank goodness the sedation clinic lab:)     Seems like a mutation test could set your mind at ease, and give you some much-needed answers.   Call Dr. Larson at U of C and talk with him;)  Maybe have a repeat PCR test in a month or two?   Certainly wouldn't hurt.

LMK if you need anything.  We'll be horse camping starting Thursday, but I WAS an Ortho RN for about 8 years before moving on to the ICU........so if you have ANY ??? about hubby, or just need to vent.   But our phones only work when we are up on the ridge away from the campground, so you might have to leave a message.

Hugs,

Lehrerin

[CallMeLucky]

Teds wrote "I just expected better"

Unfortunately you are going to have to change your expectations to preserve your sanity.  I very much understand wanting the normal life back.  That life style has passed and now you have a new life style.  It may not be the one you want or like it as much as you liked the old one, but this is what you have and when you take inventory I know there are many things you are grateful for.  To coin a phrase, life really is like a box of chocolates - you just got a bunch of crappy old spoiled chocolates in your box, but I'm sure there are still a couple of nice suprises in there.  One thing I will sugest (and forgive me if I am out of line to suggest such things), you will help yourself if you try to spend less energy hoping on different scenarios that may very well not turn out the way you think they will.  For instance, you came up with a plan that said when your PCR dropped to MMR, after 6 mo you would lower your dosage and that would help your low counts.  The problem with this is that there are so many unknown variables that you can almost never have this play out the way you want and you are ultimately setting yourself up to be let down.  For instance lowering your dosage may not help your counts.  So you will have hung on to this scenario that was not founded in fact.  Sometimes I wonder how much better off we would be if we didn't know all the details of our results.  I think I shared this story back when I was first Dx, my great grandfather had leukemia.  We're not sure what type, but we believe it was CLL.  He got it in his 70's and lived well into his 80's.  I'm not even sure if leukemia played a roll in his death.  In his case, they never told him he had cancer.  They told my grandmother and just gave him some meds that he took without asking a lot of questions.  Everyone said he never knew about his leukemia and he never complained of being sick.  Ignorance was bliss!  I know you have some real issues to deal with as a result of treatment.  But I know when I think about my issues, they are worse and when I get them out of my head for a while I do feel better.  I know my road has been a bit easier so far and I don't want to come off as "this is easy" - it is not easy for me, and I know it is harder for you and others who are in similar situation to you.  Still, try to get it out of your head sometimes.  Try not to live by a plan that you have no control over.  Try to just live day to day and make the best of it, because as we all know too well, it can always be worse and there is no point spending time and energy planning for the worse.  When and if the worse arrives you will deal with it then, in the mean time try to free yourself from the worry of the unknown.

Last quick note on the legs thing - while I totally get why that is worse for you as a female, the other night I was sitting on the couch and I casually scratched my leg.  Gleevec has made my skin very "thin" and my wife said a few minutes later "are you going to do something about that?"  I looked down and my leg was covered in blood.  I cleaned it up and it was from the smallest little abrasion.  Glad the kids were asleep and I didn't stain anything!  Ahh, the new normal.....

[Marnie]

Hey, Tedsey. . .glad you could vent, but sorry that you had to.

I just got back from my bone marrow biopsy (my butt hurts).  While we were in the waiting room, out from the doc's office came our motorcycle friend, whose wife had recommended this new doc, who I really like.  Our friend had a pretty hang-dog look on his face, so I was afraid to ask if all was o.k. with them.  Of course, it was not.  His wife has been living with CLL for 10 years, but then recently it had morphed into Hodgkin's Lymphoma.  She had just gotten a clean bill of health from the Lymphoma when I called to ask her about her onc about a month ago.  I'm mangling this story, sorry.  Anyway, the Lymphoma has returned.  She will be starting a few rounds of chemo and then two transplants one after the other.  She is in for a very rough ride, I'm afraid.  They were both, obviously, depressed, though trying to be upbeat when we saw them.

I get so frustrated when it seems like the really good people in this world are the ones that get nailed by cancer.  I know that's probably not the case and it is a non-descriminatory disease, but all around me I see good folks dealing with it.  Not fair.

Anyway, I guess that just struck me after talking with Greg and Shelly this morning, and then reading your post.

THIS STINKS! 

[Trey]

Regarding the Kinase Mutation test issue, the test is not very sensitive; so if someone is CCyR or better it usually will not show anything even if there is a mutation.

[simone4]

Tedsey, I'm sorry you were disappointed about your PCR results. You have a right

to expect better results. especially after going on Sprycel and suffering through

the lower counts.  I'm glad Trey could put this in perspective for you. Listen to

him and hold on until that next PCR in a month. You are stable, but I understand

your getting so sick of this illness.  We all do from time to time. Know that we

all care about you and are wishing you the best.

Simone

[Happycat]

Teds,

I'm so sorry you had to keep this to yourself for so long.  I can understand how it must have been driving you nuts keeping it inside and not talking about it.  I'm glad you finally had that chance to open up though.   I must say, you set the scene very well.  You have a flair for the descriptive narrative.

I kinda like Lucky's comment, which I'm sure I'll mangle without having it in front of me - to try not to live for a plan over which you have no control.  Of course, for me at least, I obsess over this stuff hoping I can somehow EXERT some control over it, rather than having IT control ME.   It's very hard accepting that I don't have control over something so important to me and my family.

I would agree with others that getting a repeat PCR in a month or so is a good idea, just to find out what is happening, a steady trend upwards, or just statistical bouncing up and down.  If you are only looking at those two data points, two points just do not make a very good line.

I'm also sorry that your dh had that scapula injury - ouch!  Sounds like it must have hurt pretty bad!  At least you'll have a chance to be the supportive spouse, and help pay your dh back for all he's done for you dealing with the CML.

Hope you're feeling better,

Traci

[GerryL]

Hi Teds,

Just keep hanging in there, I know it's difficult to not think of "what might happen". Hopefully your next PCR will show that you're stable. Getting an MMR would be great, but stable CyCR is good.

When you get into a tight place and everything goes against you, till it seems as though you could not hang on a minute longer, never give up then, for that is just the place and time that the tide will turn.  ~Harriet Beecher Stowe

Sending you lots of virtual hugs

Gerry

[ChrisC]

Wishing you deep peace as you work through this, Tedsey.

There is so much support for you here, all the wonderful advice above, all directed at the situation (wishing that hearing it makes it so!).

You are so strong, clear, and giving, so asking for help in handling the ups-and-downs is often you giving voice for others who read but don't ask: well done!

You = mom = giving = nourishing.

Breathe.   Rest.   Hug the kiddies!

Soon the next PCR test will be done, and that result will be available.

And based on that, whatever is needed will be given.

You are your own best advocate, and you will take care of everything in time.

Meanwhile, treat yourself like a guest, give yourself all the comfort and love that you give others.

Say to yourself: if worrying doesn't make me feel good, stop it.

Take care,

ChrisC

[lala]

Tedsey, I think you are amazing.  You have had a very tough leukemia road........the mouth sores and all when you have babies at home.  I admire your strength, Lala