70 replies to this topic

[Ted]

Hi Judy,

It seems as if I have a lot to learn about this disease. The doc told me this morning the surgery will have to be delayed because I don't have enough good white cells to combat infection at this time.

THANKS FOR THE HELP.

Ted

[pamsouth]

@ Ted,  good doc, he is paying attention.

Keep us posted,

PamSouth

[Ted]

Hi PamSouth,

Yes Ted and Tedsey are 2 different people and I am 54 yrs. old. I have a lot to learn to keep up with things, I thank you for the info you have provided me. I'll check out the articles you mentioned. I plan on working for another 5 years, retiring and heading for Florida.

Thanks,

Ted

[pamsouth]

We love Florida and have visited pretty much the whole state.  In 1998 we had purchased a home just west of Orlando about 8 miles east of Animal Kingdom in Davenport on the 4 corner or 4 counties.

My husband went to ST Pete Jr college back in 1961. His aunt and uncle lived in the area for several years, and his parents often took him to Florida when he was growing up. Plus my sister & her husband and deceased Aunt and Uncle live outside of Orlando.

We took care of mom for about 3 years before she passed away and she didn't want to live in Florida so we sold it in 2002.  A couple of years after we sold it, the home was worth about $100 thousand more then we sold it for, but then of course the housing recession struck, so I'm not sure what it would sell for now.  We still visit Florida often.  We have been talking about moving back to Florida, but with the housing recession we haven't decided how long we wanted to wait to put our house here in Indiana on the market.

I told my husband we aren't getting any younger he just turned 70 years and New Years I will be 64, it gets a little harder moving as you get older.  I told him if we sold this house we would just auction most of our stuff off instead of shipping it to Florida.  He wasn't real thrilled about that, he gets attached to his things.

So we will see, maybe this next spring about putting our house on the market and moving to Florida.

They have a great cancer hospital in the clear water area called Motfitt. I think that is the name.  My sister and brother law live in Kississimee Fl. He has osteo sarcoma cancer and that is where he goes.  However I am not sure if they specialize in CML.  There is an MDAnderson in Florida but I don't think they are on the same level of expertise that the one in Houston Tx is.

59 years old is a perfect age to retire and head south.  Best of Luck.  Sound like you must be doing pretty good that you are still able to work with CML?

PamSouth

[Ted]

Do you know of a cancer hospital around Fort Myers? That is where we are looking to move when I retire. As for the working with CML, I was just dx a few weeks ago and I'm doing quite well at this time. I'm sure things can get worse as time goes by but for now I'm happy to be feeling as well as I am.

Ted

[pamsouth]

Hi Tedsy,

It sounds like a lot more people on this board have less side effects with sprycel then the tasigna.

Excep,t I hear some complaining of fluids with sprycel, but I think when you lower your dose you still have a good response?

Tasigna I hear a lot of negative about the QT/heart, taking the med's on empty stomach rash, etc.

PamSouth

[tazdad08]

Hi Ted, Just lettiong you know that that sprycel has been good to me also. I too have been blessed with the acne breakouts.Good luck

[pammartin]

Scuba

Latest results

Platelets 190,000

White count 4.92

Neutrophils/ANC 1000

I will return again on Monday, still doing the weekly, perhaps as I settle down it will be moved to monthly.

Have a great holiday!

Pam

[scuba]

Pam,

Your counts look good - especially for Sprycel. Watch the ANC. Below 1000 and response to infection is compromised (no alarm unless it falls to below 500). If you hold steady at these numbers for 4 weeks, your Onc. will likely or you can ask that you be moved to monthly. I am moving myself to 3 months between tests to coincide with the PCR. I know my body well enough now to note the warning signs of low platelets and low Neutrophils which have occurred several times during my myelosuppression days.

One final thought - if for any reason your ANC should fall below 500 - ask about dose reduction rather than dose interruption or at least dose reduction at restart following dose interruption.

[pammartin]

Scuba,

Thanks for the feedback!  They did mention the ANC was still a bit low, and like you said if it falls lower, care has to be taken.  The positive part of this is I could reduce the Sprycel to 100 mg in time, right now I am on the 140 mg, so room to move if needed.  I will be very curious for the PCR in a few weeks, and my upcoming visit (if approved) to Cleveland Clinic to see CML specialist. 

[scuba]

140 mg is an enormous amount of Sprycel. Just for your reference - Dr. Cortes started me out at only 70mg. initially. His Lab techs told me that he never prescribes above 70mg. They cited his data showing response rates vs. side affects (including myelosuppression) do not justify Sprycel above 70mg. (This is why I strongly encourage people to see a top 'researcher' in the field after initial diagnosis. The guidelines are established by these researchers, and they start to follow what will become the "new" rules several years before general practioners. I fully expect new guidelines for Sprycel in a couple years time to come out. Dr. Cortes is funded by Novartis for studies in Sprycel).

In my case - I went from 70mg. initially - for only two weeks down to 20mg. where I have been for the last 7 months. My response on 20mg. has been very good - but the best benefit is that I don't have the "Sprycel" side affects

[Ted]

Pam,

Are you going to the University of Pittsburgh Cancer Institute for your treatment? My wife had thought maybe I should go there, but after seeing some of your complaints I'm glad I didn't go there. I'm dealing with Penn State Hershey and have no complaints at this time. Of course I've only been dealing with this for a month so it's going to take some time to see how my treatment progresses with Hershey.

Good Luck,

Ted

[pammartin]

Hi Ted,

I am seeing a hematologist at West Penn, so the University of Pitt Cancer Institute may be a great place if you are looking for a change.  I feel sometimes I am too harsh on the doctor I am seeing, his advice is not necessarily wrong, I just believe we are constantly speaking of the transplant option when no one else I speak with thinks this is where I need to be at this point.  Each one of us has that transplant word in the back of our minds, sometimes in small hidden places we do not frequent, but if i am responding to the drugs, then I am frustrated with the conversations concerning finding me a donor.  Having a match is ok, but going forward with that match, at least right now just does not seem to be my only, or best option.

[pammartin]

hi Scuba, I was on the 100 mg with little to no response, the platelets and white count continued to climb, that was when I was put on the hydrea and sprycel 100 mg, and instead of seeing if that would work, I was then taken off the 100 mg and given the 140 mg with the hydrea. The mixture of both drugs did the work, but of cours a bit too well.  I am still on the recovery end of that situation, off  hydrea, but still on the 140 mg Sprycel.  I believe dr is fearful if I go lower, the platelets will shoot up and then the white count does also.  I still don't know where my fish results are, it has been almost three months since they were revealed at 93%.  After several weeks I must admit to small side effects if any, only once in a while I get a heck of a headache it is a Sprycel headache and it kicks my arse!  I asked for a lower dose, but they are still thinking transplant, so I doubt they will budge on the dosage..

[scuba]

A different drug? (Ponatinib). I'd hate to see you go the transplant route.

[Judy2]

Hi Pam. Pardon my asking again but my brain is a bit foggy. Did you say you are still waiting for insurance to approve a 2nd opinion? I don't know what your financial situation is but if you can swing it it may be a good idea to get the 2nd opinion even if you have to pay for it yourself. There is nothing more important than your health!!! So many people on this board seem to think you are on a tremendous amount of Sprycel. Maybe your new onc. wouldn't think that but I do think you need to find out. When I start Sprycel I will start at 50mg  Scuba mentioned Ponatinib, my new onc. says it looks to be a really good drug. I'n curious why your onc. would consider BMT before exhausting all medication possibilities. That might be something you want to discuss with your doc. Anyway, I think you should exhaust all options before you seriously consider a BMT and that inlcudes a 2nd opinion. As a side note- how's the new house coming?

Judy

[Ted]

Hi Pam,

I didn't mean to imply that you didn't have a good Dr. At this time I'm just trying to figure out just what is going on, my official dx for CML was on December 16th, 2011. I look at some of the numbers people on this board are talking about and I have no idea what they mean. I really need some help in that department. All I can tell you now is I'm on 100mg Sprycel/day. I give more blood and see the Doc on Friday this week. I saw a colorectal surgeon this week to see about removing the tumor from my appendix and bowel, found both at the same time tumor and CML. I have to wait for the surgery because I don't have enough good white cells to fight infection at this time. It sounds like you are struggling with your CML at this point, 140mg of Sprycel is a lot. As far as your Doc talking about Bone Marrow Transplants WTF, there are a lot of options before it gets to that point. I wish you all the best and my prayers are with you.

Ted

[pammartin]

Hi Ted,

No worries, I did not believe you were noting the doctor might have incorrect information, instead I was 'thinking out loud' while typing.    The brain (at least mine) runs amok sometimes.  I was just waiting out the first three months to see what my initial results are.  I have read many things, and from the information I have discovered, (especially from Trey) one should wait to make changes until after the first three months, then move on with option from there.  I dislike writing this next sentence because I have this uncanny knack for proving myself wrong, but here goes.  I am not interested in a transplant, nor will I pursue one at this point with any doctor until I have exhausted my last option, even trial drugs.  I do not consider a transplant to be a productive choice, when there are still meds and options I can move forward too.   This is in no way a negative for people facing transplant or have gone through one, I am sure they weighed the decision like any of us would, but in my case, unless things fall apart very quickly (which they could, another disclaimer, I am famous for them) then a transplant option is way far out in the realm of options.  I also am still trying to learn about this disease, the tests, what is important, what may not be, and discover more about my particular situation with the high platelets in the beginning.  My hemotologist seems to think this is a severe rarity, and from what I am learning, although it is not the usual, it happens to many people.  From what I was told, it almost never happens, so without this board I would be less informed and unready to make a possible dr change, and feel comfortable about the move.  I have thought about the Sprycel dosage for a while now, the only reasoning (without medical training) I can come up with is, the 100 mg Sprycel did not work on the platelet issue, nor did the Hydrea, when combined, they kicked the platelets down to low levels, so I wonder if dr is thinking if I moved back to the 100 mg it may become ineffective again, as it was in the beginning.  I have to learn to live past the week to week blood tests, although I am unsure of how I am going to get past that.  Perhaps if I continue a good response, I will be able to put it aside when they become month to month and then three months.  I was feeling a bit better about the entire thing, and then I read a recent post about a fellow CML person who had a similar response, white count and platelets are good, but the Ph+ chromosome is still unmoving, so yet another consideration.  This disease has no rhyme or reason, it just is, and that truly sucks!  The best to you also!  Hopefully 2012 will bring a few new drugs to our table, and we can continue to move forward. Take care

Pam

[pammartin]

Hi Judy,

The new house is full of boxes, the old one still holds a good part of our 'stuff' I think Goodwill and dumpster are in order, we have not used it in two weeks, am thinking we do not need it!  I am trying to get the energy to unpack boxes so I can go refill them, but we are in a winter storm watch I have to get for bloodwork today, and then pay my taxes at courthouse, so I fear not one box will see progress.  I would go to Cleveland Clinic without referral, but not sure they would take me.  I do not know if many others have run into this problem, but when you request an appointment, the hospital/clinic wants you to provide your insurance information.  I have had no return calls after this information is provided, I am a realist, if there is no coverage, then they are not interested in seeing me.  I have made my oncologist aware I will pay out-of -pocket for appointment, so waiting on results.  I am wondering if because I do have insurance, many are passing me by, because there are people I can see and would be covered if I stay where I am.  My three month is coming up fast, and if it seems I am dragging my feet, that is the only reason.  The initial response will tell if I need to move further, seeing a specialist is something that will probably make me feel better, but I also am interested in the best course for my particular CML case/response.  I have come to the conclusion I am not interested in changing because I do not like what I am hearing, instead I need to listen, then see what are my options, if then I feel treatment is not progressing or I am uncomfortable, then it is time for a change.  (lots of soul searching these past two weeks)  I would like to begin to put this CML on the back burner, it is here, I am involved, but I am once again allowing it to control my life.  I have to find a way to stop this course of action, it is not healthy, mentally or physically.  I am great after I hear my results are good, then come the weekend I begin to panic, thinking Monday is coming and I have to go in again.  Then I wait from Monday-Tuesday to see what the results are, and the cycle begins again.  Living is the best CML revenge, living without constant fear would be even sweeter.  Now........how do I achieve my goal?  (Soon as I have a plan I will let you know)

[Judy2]

Hi Pam. Most people on the board say once you start getting positive test rsults consistently, the CML naturally gets put on the back burner.Give yourself some time, I'm sure the same thing will happen with you. Last summer, when my counts were normal and before I had my first 3mo post dx PCR test I felt great, no worries about my CML. It was only when the tests started to come back less than positive did I start worrying. I expect once things get under control again I'll feel better and I'm sure the same thing will happen for you. Please let me know how todays blood work comes out.

Are you supposed to get much snow where you are? We have had a very mild winter in the Boston area so far, I'm hoping it continues this way. I  think it will as I treated myself to new boots this year and I haven't had a chance to wear them yet. Every year I buy new boots we have very little snow.

Judy