18 replies to this topic

[Tedsey]

Perhaps it is just the drug change, but I don't think so.  Recently, I have been having a very terrible time with this anemia.  I am finding I cannot function anywhere close to when I was first diagnosed or when I first started getting it bad.  I am just getting worse and worse.  Taking care of my children is excruciating.  I cannot cross the room without my heart beating and have trouble breathing.  I try, but I no longer can really walk the baby to sleep.  She hates this!  I hate hearing her cry.  I feel so bad for my kids.  We can no longer go out and I do not dare to drive.  I know this has only been going on for a few of months, but the anemia is not getting better.  Maybe I am too impatient.  The stim shots I think just keep me alive (I now cannot seem to get over HGB 7).  Before at 6, I was OK, but after an allergic reaction to a transfusion (the nurses think I am allergic to some preservative in the blood), I am not the same.  So, my onc wants to keep me away from transfusions.  And to tell you the truth, the last one made me feel worse than ever, (well, I only had two bags of blood which equals one transfusion because it was one bag one day and one the other).  I seem OK through my writing on the board, and I am trying to put up a good front for everyone in my life, but I am really struggling.  My onc seems to be OK with me just plugging along like this.

Has anyone else had some other treatment or does anyone know of a specialist who is familiar with severe anemia?  I will keep on trying, but I think we are going to have to hire help with the kids. I hate to think this is permanent.  Just had a drug change, so I guess I will have to wait and see if it helps.  But things were getting worse before the change.  I don't think there is anything that can be done.  So, I don't know if it is worth the expense to travel and see a specialist.  I am so jealous of hearing that people work out.  I used to be so active.  If I could just get across the room without my heart racing, I would be happy.  Of course, I am only kidding.  I only want good things to happen to everyone.  Just waiting for my slice.  I am afraid with all this, I will be too weak for a transplant despite being a little younger.  Right now, I am not so confident in drug therapy.  It has been nine months. 

[rct]

I am so sorry Tedsey.

We have been goofing around with low wbc/anc for...two years plus a little now, to no avail.  Off Gleevec, waited, Tasigna, back off of that, 5 weeks of no TKI at all.  Back to Gleevec and Neupogen, and it looks like for good or until she doesn't need it.

It is very very discouraging to say the least.  Don't look like there is much explaining that can be done, or that there is much a specialist can come up with.  We journeyed clear to the other edge of the country to see him and he didn't have anything for us really, stay on the Neupogen was all he offered.

Druker did offer to us that he would not be surprised to see her in three years still on Neupogen shots periodically.  Our local guys want to try a test the Red Cross does to see if she has ANC specific antibodies or WBC antigens, a pretty rare condition that SHOULD show other symptoms so they aren't real excited about it or anything, just a shot in the dark to make sure.  But she can't keep enough anc up to do the test!  Took 8 tubes just for that and couldn't use them.

Sucks.  Big.  Really does, no other word for what you are doing.  I do not know what specialist you could even see, but I would hope you can at least rule out the other major problems in a body that can do these things.  That's what we think we have pretty much done, and even though the docs here do NOT think it is the TKIs, they don't know what else it is.

I'm thinkin about you.

rct

[Trey]

Tedsey,

Per RCT's experience, CML Specialists are not going to have any magic for you.  Give the Sprycel a chance and see what happens.  I would not expect a quick or complete turn-around, but hope exists that you could see some improvement, although slowly and over time.  Generally taking the lowest dosage possible, and doing the other things you are already doing as they are needed, is about as good a strategy as exists.  You could look at the iron infusion issue for some temporary help.

This is a tough issue and certainly weighs heavily on you both.  We wish we could do more for you both.

[simone4]

Tedsey, I'm so sorry that the anemia and the drugs are causing you such fatigue.

I had the same thing happen to me after my Dx.  The first few months I had pain in

my legs, edema,etc. as well as low counts,yet I flew home, cleaned out my parent's

home after their deaths, closed on the house, came back to a flooded home here

in Atlanta, but I kept on going.  Just  like you did the first months.  Then it hit me

like a rock and my stamina and fatigue have never been so bad. Some  days are

better, and some days I feel like I am swimming against the waves. I think you should

find help with your kids, if you can. Save your energy to hold and kiss them, leave the

leg work to someone else. It is very discouraging, and I will not play cheerleader, but

lie down when you can and be gentle with yourself. You are not alone. A lot of us here

cannot workout, cannot finish a sentence, or walk across a room without falling

on the sofa when we get there.

You are so wise and so kind to all of us on this board. I am thinking of you

and hoping tomorrow will be better for you..

Simone

[simone4]

RCT, I would be remiss if I didn't let you know how often I think of

your wife and her difficult journey through this disease. I wish her

well; and I am certain that your concern and knowledge of CML, plus

your delightful sense of humor (as well as your wisdom) sees her

through the bleakest of days.

I wish her better days ahead.

Simone

[Susan61]

Hi Tedsey:  I am so sorry that your having such a rough time of it.  I get very tired from my anemia, and get frustrated because I cannot do what I used to do or what I want to do.  I have to stop and tell myself that this is the way it has to be for now.  I cannot compare myself to you with the fatigue and weakness.

I do get it, but not as bad as your having it.  I am having a bad week with no energy at all this week, and it is noticeable even to my husband.

    If you can get the help with the children etc. then do it.  Anything to make it easy for yourself.  I do not know if a Specialist is the answer, but I do believe in being sure you have the best experienced Oncologist/Hematologist for your care.

   We are all here for you at anytime, and I will pray that you start to get more energy and your numbers come up.

   Your body has to adjust to changes in medication.  Sometimes it takes awhile for it to kick in as they say.

[Susan61]

Hi:  I saw your response to Tedsey, and your wife is very lucky to have a great husband to get her through.  You always have so much encouragement for everyone else on here.  Hope your wife does good with the combination.  I have never been on anything but Gleevec since I started in 2000, and its been real rough at times.  My husband gets me through the worst times and moods, and I am so glad that I have him.  I am sure your wife feels the same about you.

The anemia can really wipe you out, and then add the other side effects does not help.  I have good weeks and bad weeks, and this week so far has not been a good one.  I just pray that next week is better.

    Hope your wife starts to feel better soon.

[hannibellemo]

Teds,

I've tried to write you 4 times now and I've had to stop for fear of being too blunt. Until I can think of a way to tell you how concerned I am for you, I just want you to know that I am thinking of you and I am so very, very sorry that this is such a difficult journey for you!

I'm sending you a private message.

Pat

[lthouse612]

Wow, Tedsey.... You're right.. when you or I'm sure most others are posting you never actually "hear" how they're doing as oppose to reading it.  It's gives a false sense that someone may or may not be doing as good as they really are.  I feel for you and I hope the changes that are happening in your body will soon stabilize so you can actually feel better.  I can't imagine how frustrating it must be for you and when it becomes increasingly difficult (when it should be gettting better) I know theres probably not a lot one could say to really make you feel better about the whole situation.  Just know you're in a lot of peoples thoughts and prayers... hang in there...

Mark

[Josephine]

Please hang in there Tedsey.  You can do this.  I pray things will improve day by day.  Lisa

[MJL]

Just to let you know that I am "pulling" for you and your family. Perhaps getting help with the children will help you feel better and allow you to get the rest you need right now.

Positive thoughts and prayers.

MJL.

[Cathy]

Tuesday, I'm so sorry you are having such a rough time. Take care of yourself first, if you need to get help with your kids do it. You just might get stronger in a little while and be better. I hope things change for you for the better really soon. You/we have a great support system here. I'm having a hard week myself and I still work 40 hours and was thinking driving in how exhausted I've been and trying to act like everything is okay and I'm feeling normal. I don't think any of us feel completely normal. It's a hard disease to deal with at times. Your in my thoughts Take care

Cathy

[Cathy]

rtc . Your wife and you and in my thoughts as well. I hope she is also feeling better soon! She is lucky to have such a great guy by her side. Take Care! Cathy

[janekaye]

Hi Tedsey,

I hope all the posts since yesterday will convey to you how many people are pulling for you.  I know I certainly am, and although I don't post often, I generally follow the discussion boards at least three or four times a week.  I think it makes us all feel bad that you're having such a difficult time in the early stages of this CML journey.

I can't remember whether you said you had been tested for any gastro issues - I spent nine months on Gleevec before my switch to Sprycel, and during that time I had lots of issues with low hemoglobin - usually around 8.  I had a colonoscopy, an endoscopy, and two capsule endoscopies (small pill with camera contained that you swallow - photos of digestive tract are recorded and reviewed).  I also had tests done to see if my body was actually producing enough iron.  Eventually a small intestinal bleed was diagnosed and medication started.  However, in the meantime, my onc suggested an iron infusion (don't know if you've had one of those or not).  For me it was very uneventful and made me feel much better within almost no time.  I'm now on Sprycel and the blood counts (keeping my fingers crossed and my prayers said every day) are all within the normal range.

I hope your onc is exploring EVERY possible way to make you feel better - you cannot be expected to just "plug along" with counts like that - not without help from someone.

My thoughts are with you,

-janekaye

[janekaye]

rct,

I agree with everyone else that your wife is lucky to have you as an advocate.  Hers sounds like a difficult road to travel, and having you must make it a bit easier every day. Apparently you all have pursued solutions down every road, and that's about all you can do.

Maybe time will provide some further healing and she will feel better.  I hope so.

Take care,

-janekaye

[lizy1013]

Tedsey, I am very sorry for you and I wish you the very best.  Hang in there!  Marie

[lala]

Tedsey, my heart is breaking for you.  It sounds like you need a lot of time in bed to rest and care for only you.  When I was diagnosed, I had to stay in bed or on the couch for almost nine months.  I cannot imagine trying to care for small kids when your body is so weak.  I hope you have some docs near you that can help you.....would a call to that wonderful --so I read ---doctor at the U of M help you?  Someone has tohelp you!

Take care of you ------ I hope tomorrow is a better day for you and your family......know we are all pulling for you!!  ~lala  

[Tedsey]

Just want to give a heart-felt thank you to everyone who replied.  Still trying to hang in there.  And it is nice not to feel so alone.  I am grateful for everyone who makes up this board.  May a cure for CML come in our lifetime and quickly!

[katherinef]

Tedsey -- I just want to add my prayers and best wishes along with the others'.    I'm sorry you are having such a tough time and I hope it gets much easier for you soon. 

Kathy