17 replies to this topic

[Tedsey]

OK, after a night's sleep, I am having reservations about taking darbepoetin (a drug to stimulate red blood cells).  I am getting into the danger zone with anemia.  The warnings for this drug are very clear.  It could kill me and destroy my heart and kidneys.  Needless to say, I am terrified to take it.  And I thought Neulasta and Neupogen were bad (also have myelosuppression).

I probably would not have reservations if I didn't have a 1 and 3 year old.  I would take my chances with the drug.  My thinking is, at least if all fails, with CML, I have 5 years (that is, if not given a SCT before then that works or not).  I do not want to have heart or other organ issues to deal with on top of CML when I don't have to.  I feel like I am between a rock and a hard place.  Do I take the drug or not?  I know I have to make this decision myself.  I am so cast down right now as I watch the majority of people on this site get better as I get worse.  Of course, I want everyone to be well here.  It really makes me happy when I read that people are doing so well.  I am just sad because of my bad luck.

I could take a break from the Gleevec, but I don't know if this is a good idea.  I have not reached CCyR.  My trouble with severe anemia may not be from the Gleevec.  I feel like I got to come up with a decision quick.  My HGB keeps on falling.  I don't know how much time I have to think about this.  Perhaps I can ask for a transfusion to buy me a little time, but that comes with risks too.  However, I live in the house of few choices now.

I know Simone has done well with a similar kind of drug, but I am really terrified.  Has anyone gotten as low as HGB 6.5 or below and solved it without injections?  Did just a few transfusions do the trick?  I wish I knew why my body is rebelling against me.  I am doing eveything I can to stay in good health.  Crazy thing, until today, I have been feeling fine.  I noticed that my heart started beating hard today coming down the stairs and the rushing in my ear is driving me nuts.  I don't think I have much time to make a decision.  It is Friday.  Guess I need to have a heart to heart with my onc, but I am sure she will assure me that she has used this drug successfully before--maybe.  I would really like to ask her what she would do if she had cancer that is behaving badly and two little children.  I don't think oncs always see us as people, but as broken machines.  What works works whether or not it can harm in the long or short term.  This cancer couldn't have come at a worse time (silliest statement of the year, eh?!?!).  Comments welcome.  It appears there are only a few of us with this problem out there.    

P.S. If anyone reads this, thanks.  I needed to vent.  After my mad (mad as in crazy) post, I have read that in small amounts and in the short-term, the drug may not be harmful.  It probably beats traditional chemotherapy which I am sure is even more toxic.  Also, to the best of my knowledge and my oncs, my heart and organs are in good shape.  I should probably head down this path of reason instead of the path of doom!  In the meantime, while writing this, I am building a fort for my kids and waiting to hear from onc.

[Marnie]

Hey, Tedsey.. .

I wish I had some advice to give, but I don't.  That said, I'll be thinking about you.  I DO believe that things will work out.  I just wish they would work out for you faster!  You have really been through the wringer.

Take care of yourself, and continue to enjoy each day as you can.  Good luck as you make your decisions.

Marnie

[BethG]

Aww Tedsey,

First of all a big virtual hug to you. You have definitely had a rough road with this disease. I don't have any advice on the choices you have to make, but I do know what it feels like to be "backed into a corner" with this dang disease. Hopefully with more information and time you will get the perspective you need to make the best choice for you.

Hugs,

BethG

[CallMeLucky]

Hey Tedsey - sorry I have no real advice about your situation, unfortunately you know this is a decision only you can make with the input of your doctor and family.  I'm sorry to hear you are having such a hard time, but we are hear to listen.  As a fellow parent with young children, I know this can be particularly troubling.  That's not to take away from those afflicted who don't have children or who's children are grown up, but I think as parents with young kids we carry an different type of burden with this disease.  How many times have I said over the last couple of weeks, "if I can just make it to their 18th birthday".  Obviously I want to be around longer, but it becomes a focus.  Then I start to think maybe I am not helping myself by thinking that way.  The additional stress on me can't be good, perhaps the best thing I can do for them is to focus on how best to take care of me.  I think you made a good point about leveraging reason against emotion.  As difficult as it will be, you need to try to strip emotion out of the equation.  Get your facts on both sides and then sit down and try to look at it as objectively as you can.  Make the best decision you can for you - that is the best decision you can make for your family.  The rest is out of our hands.

I wish you well and really hope things start to turn around for you soon.

[janekaye]

I think venting is fine, so not to worry - even whining helps me sometimes (this according to my sweet husband)!

I think you're faced with a hard decision, of course, so I'm wondering if you've thought about 1) another "second or third" opinion, 2) an attempt to get in touch with Dr. Druker or his nurse, and/or 3) asking your current onc about a break from Gleevec until they figure this out.  Like you, I would be reluctant to take a break, but on the other hand, it seems as if quite a few people on this board have done that.  I think the most important thing would be to act quickly so that you don't find yourself in an emergency (such as fainting, etc.) especially with the small children to think about.

Please let us know what the onc says --- you're in a hard place, and I know we're all thinking of you.

-janekaye

[simone4]

Hi Tedsey, it is me again, Simone, the one AND only person who has

actually lived to tell the story about Procrit. (I am teasing you now. Bad habit,

picked it up from Trey).  Please read that LOW dosages of the drug over a
SHORT period of time is not life-threatening. And now, (if I have told you this

before, nevermind) but my onc stood before me and said "I used Procrit

when I had cancer, and I would not give it to you if I had not used it before

and found it to be safe." He needed not say more.  I looked on my records,

and I had only 4 shots,once a week for 4 weeks.  LOW dosage, SHORT

period of time.  Felt better.

Take care.

Simone

[Trey]

Tedsey,

You must look at your options and ask yourself which of the several not-so-great available options is most acceptable.  You appear to be making some progress on the low blood count issue, and it looks to me like you could potentially be about to break through the low WBC issue, although there will still be ups and downs.

So what are the options (even if they are "bad" options)?  Generally they are:

1) Do nothing unless the issue becomes critical and see what happens -- This has obvious risks that you could be caught by a rapid drop between CBCs, especially during a menstrual bleed.  And you are generally a "bleeder", which increases the risk.  (I hope you are getting weekly CBCs).

2) Have an iron infusion -- Would probably help for a short term.  Maybe that is all you need.  But maybe it won't help much at all.  What is your RBC (not just the HCT or HGB)?  If RBC is adequate an infusion may be more likely to succeed.

3) Take a drug break -- You have had a couple drug breaks that did not solve the problem.  Often re-starting is done at lower dosage.  The downside is that your PCR would likely suffer for it in your case because you have not been a "fast responder", possibly because of the drug breaks.

4) Lower Gleevec dosage -- If not already at 300mg you should be. Also split dosage (1/2 dosage twice a day) may help a little

5) Switch TKI drugs -- A different drug may change your low counts profile, either for the better or for worse.  And it might possibly disrupt your progress made so far if the new TKI is harsher on your blood counts.

6) Take one of the RBC stimulating drugs -- This allows you to continue your current presumed progress and stay on Gleevec.  There is some amount of health risk.  I do not know how much really, but the warnings are written by lawyers, so they will scare you.  Most drugs have health risks -- Tylenol, etc.

Some of the above options could be combined.

There may be other options someone might want to suggest based on personal experience.

If you make any major changes, it might upset the delicate balance you now have (if that is what you have).  Maybe one more CBC will show you if the drop was temporary, if your Onc allows you to wait.  These things can bounce around like a yo-yo.

Just to add one item.  Do not drink large amounts of water within several hours prior to a CBC.  Blood count "normal ranges" are based on drinking average amounts of water.  Many people drink far more water now, so blood counts can appear lower due to dilution of the blood (since counts are measured per volume of blood).  So some people may inadvertantly lower their blood counts by over-hydration.

[Melody<3crafts]

Tedsey:  I'm very new to all of this.  I just wanted to tell you that you will be in my thoughts.  You have a hard choice to make and I believe having small children (which I don't have) would make it very difficult. Melody

[Susan61]

Hi Tedsey:  Sorry your having these problems. I cannot advise anything, but try the things that Trey told you to do.  I can only pray that your numbers get better, without you doing all these other things you listed.  When I am really down, I just turn to the Lord because he is the greatest Physician we will ever have.  I know what the anxiety feels like.  Have Faith.
Take Care

Susan

[chiocchi]

Hi Tedsey,hope your onc got back to you and helped with a decision.I am an rn and administer procrit  almost routinely to hep c patients receiving treatment. But at 6.5 we would have you in a hospital getting a transfusion.you will feel better with either working to get your hgb up. I will pray for you,Sincerely,Chiocchi

[Tedsey]

Thank you everyone!  Just talking about this and reading your responses helped me to feel better and figure out what to do.  This weekend, I can sit on the fence a little.  My husband is home and I don't have to worry so much about passing out alone with the kids.  But I feel OK.  Went to a bowling birthday party this morning, but I will not drive right now.  Although I feel OK, I can only think with a transfusion or shots, I will feel spectacular.  Maybe I will start training for a marathon .  My onc has already mentioned a lot of what Trey and some of you brought up.  It makes me feel that I am in good hands with her.  Did not hear back from our most recent correspondence because it was too close to 5pm and she probably left for the day.  But she will get a hold of me.  She is great about that.

Here is something funny, which in some way makes me feel better (and worse).  There was a silly article in our newspaper about Ozzy Ozbourne.  It talked about how scientists want to map out his genome.  It appears with all his decades of substance abuse, he is still healthy in older age.  And people who do much less, like yours truly, don't fare as well sometimes, (I actually never took drugs and don't like to, and when it came time for me to take a drug, it had to be a big one for a big sick. Go figure...).  So, if all those decades of drug abuse didn't hurt him, I hold on to the hope that 1 or 2 shots of a questionable drug will be OK for me.  Wish I had Ozzy's genes, but his story is not over yet.  Neither is mine.  Maybe in some way, all these drugs will protect me and other CMLers from some unfavorable condition.

Best of luck to all of you.  Thank you so much for your kind and very helpful responses.  I feel much more at ease.  Thank you all from the bottom of my heart!

Oh, here are the numbers of my last CBC:

WBC	2.4	4.0 - 10.0 THOU/CU MM
RBC	1.84	3.90 - 5.25 M/UL
HEMOGLOBIN	6.5	12.0 - 15.0 GM/DL
Results double checked; consistent with previous history
HCT	18.7	36.0 - 45.0 %
Results double checked; consistent with previous history
MCV	101.5	81.0 - 99.0 CU MICRONS
Result double checked.
MCH	35.2	27.0 - 33.0 UUG
MCHC	34.6	32.5 - 36.5 %
RDW	23.3	11.6 - 14.8 %
PLATELET COUNT	40	150 - 400 THOU/CU MM
Results double checked; consistent with previous history The peripheral smear was reviewed, no qualitative changes are seen, and the manual differential matches the autodifferential.
LYMPH%	38.1	12.0 - 40.0 %
MONO%	7.3	4.0 - 12.0 %
NEUT%	53.2	40.0 - 74.0 %
EOSIN%	1.1	0.0 - 8.0 %
BASO%	0.3	0.0 - 2.0 %
ABSOLUTE LYMPH	0.9	1.0 - 4.0 THOU/CU MM
ABSOLUTE MONO	0.2	0.1 - 0.7 THOU/CU MM
ABSOLUTE NEUT	1.3	1.5 - 8.0 THOU/CU MM
ABSOLUTE EOS	0.0	0.0 - 0.6 THOU/CU MM
ABSOLUTE BASO	0.0	0.0 - 0.2 THOU/CU MM

P.S. With my last BMB I was 15% cellular, but I had sufficient iron.  That probably tells much of the story.  I tend to freak out before I can calm myself enough to look at the data with a clear head.

[Trey]

Your body is compensating for the anemia (which is fairly severe).  That is why you hear blood rushing in your ears, as the thin blood is pushed through faster by the heart (also may have the heart pounding on occasion).  This keeps oxygen flowing as the low numbers of RBCs are refreshed more often with oxygen since they pass through the lungs more often.  This is why you do not feel like you are about to keel over.

Your numbers are on the edge of needing a red blood cell transfusion.  For someone who is completely normal (no CML), they might already have been transfused, as Chiocchi said.  For those of us on Gleevec with CML, we might be watched a little longer as referenced below.  It is a close call, and could go either way, and the transfusion suggestion is certainly worthy of considering if you do not improve soon.

Here are some guidelines for transfusion of RBC:

http://www.wadsworth.org/labcert/blood_tissue/redblood.htm

Anemia secondary to aplasia or bone marrow suppression. In patients  with no symptoms of anemia and:

1. no high risk factors -- a hemoglobin of 6-7 g/dL may be  sufficient

[mags]

I'm with you.  I am sorry to butt in, but I am also an RN, and while I don't have CML and am not very familiar with it, I don't get why Tedsey isn't in the hospital, having already been transfused.  I have MDS, and when I reach 8.5, I will be transfused.  I don't get how someone can still feel well at 6.5!  The risks of being so low are great.....CHF to start with and I won't even mention the worse ones.  Maybe you can explain, Trey?

Mags

[ncook]

Tedsey,

Sending you hugs that things start looking better!!  Stay determined! hugs, nicole

PS. I love that name Tedsey.. My grandfather was Ted:)

[Trey]

Mags,

Your inputs certainly have some merit, and Tedsey's Onc needs to do something very soon if her RBC count does not improve quickly.  Many Oncs would have transfused based on her latest report.  But to answer your question, CML patients are not on chemotherapy drugs, and there are other important differences from MDS.  MDS more directly affects red blood cell production than CML does, so MDS can often cause RBC transfusion dependence.  Your Onc does not want your RBC count to go below a certain point because he knows it will keep going lower, and wants to catch it at a certain point (8.5 HGB in your Onc's opinion).  I do not know the right answer for Tedsey, but her Onc has decided to not transfuse at her current levels, although some other Oncs would have.  Her young age has something to do with it, and also her lack of symptoms (she feels quite well and is active).  Regarding the congestive heart failure issue you mentioned, it is not considered an issue until HGB is  below 3.0 for most people.  With CML, the low RBC counts should be a temporary condition that we can work out of permanently.  It is not so simple for MDS patients.  We are all concerned about Tedsey's current blood counts, but she has made progress on the WBC, which is very good news that may imply a bottoming out process for all counts, which is what I assume her Onc believes.  Tedsey's Onc will need to do something very soon unless her marrow brings her RBC counts up, likely stimulation drugs or transfusion or both.  And I would be very concerned about Tedsey going into a menstrual bleed in her current condition.

There is no "risk free" approach here.  Not transfusing has risks.  Transfusing has risks.  Stimulation drugs have risks.  Tedsey and her Onc will need to decide.

http://jama.ama-assn.org/cgi/content/extract/292/13/1610

http://www.scbcinfo.org/publications/bulletin_v2_n3.htm

http://www.wadsworth...ue/redblood.htm

Anemia  secondary to aplasia or bone marrow suppression. In patients with no  symptoms of anemia and:

1. no high risk factors -- a hemoglobin of  6-7 g/dL may be  sufficient

[Trey]

Duplicate posting deleted....

[Trey]

Something wrong with the website that caused multiple postings....

[Tedsey]

Thanks Trey.  As my emotions settle, the more I read, the better I feel.  I think I will go in for a CBC (with differentials) tomorrow.  I am still doing well, so maybe my body is compensating.  Perhaps the HGB has come up.  I would much prefer to keep an eye on it this next week if I can.  Of course, I'll discuss this with my onc.   I now feel most comfortable taking a shot of darbepoetin or whatever poetin if my onc recommends it.  And like you and my onc mentioned a drug change, and it may be good, because of what you said, I would like to wait and see if my WBC are making a comeback on Gleevec.  I think I have time for that.  Tough decisions.  Thank you for helping me to figure out what is best for my treatment.  I want to stay the course with Dr Druker's advice (stay on drug at all costs, for the most part). 

I hope in some way this discussion could help someone else out too.