8 replies to this topic

[reedgirl]

Hi all....

  It has been a very long time since I've been on, well not exactly, I get on and check in on people but haven't posted or commented for a very long time.  Few concerns....First, husband has been having pretty bad night sweats for the last couple months, to the point of waking up completely soaked and me having to change sheets all the time again.  He hasn't had sweats like these this frequently, like at least 3 or 4 nights a week, since he was diagnosed.  He's fighting a bad cold, coughing a lot for a week and a half.  This past Sunday he developed a nose bleed.  Not just a little blood on the tissue when he blew, but a full running out the nose, used only one tissue thank goodness, nose bleed.  Hasn't had one of those since diagnosis either.  So, at what point does one start to worry???? He's been on 70mg Sprycel since Feb 2011.  Minimal side effects, Dr Talpaz doesn't want to increase dosage because he reacts so strong to the medication it throws all his counts off whack.  His PCR test in October 2012 was .055,  in April 2013 was .069 and in October 2013 was .07.  After all this time I sure would like to see more zero's after that decimal.  Is that necessary????

I finally, with much hesitation from my hubby, contacted Dr Talpaz.  He has an appointment Monday, so Sunday we make the 5 hour drive to U of M.  I'm nervous.  I really really really want to see a PCRU or at least a .000something.  Looking at the last 3 tests I'm discouraged. I don't want to be, just don't know how not to be esp with the issues he's been having.  After 3+ years is it too much to want or expect a lower PCR test result?  I'm really discouraged and disgusted with things.  Maybe it's starting to get to me listening to him cough all the time and having family and other say "he just has a cold" or "he's doing great, look how good he looks" and my favorite "he's getting older these things happen".  One of these day's I'm probably gonna explode on someone

Thanks everyone for reading and for replying in advance.  Sorry to all of a sudden pop up out of nowhere with a rambling on message.

Audrey Reed

[Marnie]

Hey, Audrey. . .hang in there.  You are in very good hands with Dr. Talpaz.  Take a deep breath, try to relax, and don't stress out (easier said than done).  The nose bleed could be nothing more than really dry air because it's a miserably cold winter.  I've just spent a week with a snot-filled head, coughing and hacking and losing my voice.  It's that time of year, and your husband's immune system is strong enough to deal with a cold, even if it is a nasty one.

Dr. Talpaz will have good answers to your questions. 

Best,

Marnie

[GerryL]

Hi Audrey,

It is hard caring for someone with a serious disease - been there, done that, still got the tshirt. Even harder when they don't really look like they are ill e.g. haven't lost a lot of weight, haven't lost their hair, still alive after 3 1/2 years.

Your hubby has reached MMR which is a really good place to be. As nice as it is to see PCRU, for most people it doesn't mean the CML has gone. A friend of mine had been PCRU for a at least 4 years, she had a go at coming off Gleevec, but unfortunately it returned within the six month time frame. She is now back on Gleevec.

The night sweats might just be one of those things cycling through or it could be that his body is fighting off the virus he has.

As for the getting older, I had the specialist say that to me at my last visit when I was talking to him about my neck issues. He didn't believe it was Gleevec related, apparently as I'm nearly 50 it is all downhill from here.

Hopefully the visit with Dr Talpaz helps. Let us know how things go. 

[reedgirl]

Thank you so much for the reply Marnie, I know once we get to Dr Talpaz things will be much better and I'll feel much better.  He has a great way of reassuring us things are ok.  I got caught up in the numbers, the sweats, the nose bleed etc.  We saw his local oncologist yesterday who kind of put more fear into me.  She said if Greg were her patient, if they were making decisions she'd have done a BMB right there yesterday.  That scared us a little, and also reassured us we were seeing the right doctor, Dr Talpaz!

Thanks again,

Hope your fairing through the cold and snow well,

Audrey

ps..hope you get that dosage reduction and do super on it!!

[reedgirl]

Thank you Gerry L for the reassuring words.  It is tough caring for someone who doesn't like to admit they are sick when they are, who doesn't want to admit he has a health problem.  Not that I want him living his life dwelling on CML, but at least realizing that when he develops a nasty cough it can change pretty quick into something worse esp when white counts are low.

I sometimes let myself get caught up in the numbers and read about how well and how low other people's PCR test numbers are and think why hasn't he gotten lower, why have the last three trended up just a little...on and on....I guess this is true even if he were technically PCRU, I'd probably be worrying with each test hoping to still see that U.  Thank you for the encouragement and reassurance.  I'm definitely looking forward to seeing Dr Talpaz, will post an update after Monday

Thanks again,

Audrey

[Trey]

The TKI drugs can make the capillaries, including in the nose, break more easily.  Combined with the dry air of winter, and especially inside when a furnace is continually running, nosebleeds will be more likely.  And add the cold and nose blowing and it is not so unexpected to hear about his nosebleed. 

The night sweats are not a good predictor of CML status.  Especially when someone has been sick.

It is unlikely that his steady-state MMR status has changed in several months, especially 3 1/2 years after diagnosis.  And Dr Talpaz's approach on the dosage seems appropriate.  I realize you had a reason in the past to be on guard about his case with the 3-way translocation, but a sudden change in CML status at this point is unlikely.

[reedgirl]

Thanks so much Trey, I knew I could count on you for some solid reassurance!! I wish I could be satisfied with his response and not wish for more.  For some reason I'm having a hard time not focussing on that dreaded PCR test and not seeing more of a decline and more zero's .   It's something I have to work through and let go of, once we see Dr Talpaz and he assures me once again things are ok I'm sure I'll settle down.

Hope I'm not over reacting, although I probably am, and not wasting a trip to Michigan or wasting Dr Talpaz's time

Thanks again,

Audrey

[GerryL]

Hi Audrey,

Make sure you take care of yourself as well as your family. I cared for my mum and also worked full time for around 10 years until she passed away. It was darn hard.

Caring for someone with CML is slightly harder in some ways, in that we look okay to everyone else and it is only those close to us that see our struggles.

And never think that you are wasting time in making sure everything is going well, particularly with the past history, setting your mind at ease is important.

Wishing you some good news on Monday.

[reedgirl]

Thank you GerryL.  I have been having my moments recently, thankfully I have a great support system with my family and a few friends.  After I had the appointment set up, I've been second guessing myself thinking I should have just waited to see how things went the next few weeks, and maybe he would be fine to wait until his April appointment with Dr Talpaz.  But the local oncologist kind of worried me more, although I should have kept in mind she is not a blood cancer specialist.  We were thinking of heading to Florida in a couple weeks, just for a week to get away.  The local oncologist told us she would not recommend us going until we saw Dr Talpaz, so that added to my concern.  Anyway, I guess it will be much better once I see him Monday and get the reassurance from him to really settle me down lol.  I just need to get it through my thick head to stop looking at the PCR test and stop focusing on getting a PCRU result.  It just makes me mad, frustrated that after 3 years of being on Sprycel he is only .07.

Anyway I'll quit rambling again, thank you for the encouragement and response.  I'll give an update Monday

Audrey