15 replies to this topic

[luvmybees24]

For the most part (I was just dx 11-14-11), I totally forget I have leukemia. I take my pills, I go on with my life and I feel fine. Then there are times I think "OMG I HAVE CANCER!" and I break down and sob. I am doing very well on the Tasigna (MMR and 3 log reduction after 4 months) but I am so scared I'll lose my response or have to switch to a drug with more side effects. I barely have any on Tasigna. How do you all deal with the anxiety and "what if's"? I keep thinking "Omg what if I lose all response and need a bone marrow transplant some day?" or "What if I don't make it for more than 5 years",  "What if this is my last Easter" etc.  I've also started to worry about any little pain or bump. I was never a hypochondriac and I feel like I'm becoming one. My left side hurts by my shoulder, through my neck down a little towards my breast. Chances are it's a pulled muscle but I've already got myself diagnosed with breast cancer. Sigh... I just try to stay calm and for the most part I AM but this just sucks.

I try not to complain to others in my life because I truly AM lucky. There are a lot of people worse off than me and the fact I can take a pill, live a normal life and not have to be in a hospital is reason to celebrate in itself. but it's still so hard to stay positive all the time. I think I may feel better once I go to see Dr. Talpaz at U of M. That is, if he accepts me as a patient. I made an appt. but they have to call me back after he reviews my records.

Any words of advice?

Laura.

[Susan61]

Hi Laura:  I cannot say don't do this to yourself, because I am just as much to blame for going through these things myself.  The fact that your going to see a new doctor, and your wondering about that BMB is what is making your mind go non-stop.  I have to say that its not the CML anymore that bothers me.  Yes, I sometimes wonder about where it is all going, but again I have been living with it a lot longer than you.  In some of my previous posts recently I spoke of having Panic Attacks.  My attacks are not anything to do with the CML, but just trying to survive in this horrible economy.

My husband has had cutbacks at work, and our constant struggling is what gets to me.

We all have different reasons why we worry, but it seems to be a fact of life.

I think when you get some concrete answers to all the stress you  have been feeling with switching doctors etc. you will see a big cloud lifted from you.  I know myself that I go through ups an downs.  Life is not kind, but your going to be just fine.  When you see Dr. Talpaz let him know about all your concerns, and ask questions.  I think you will leave his office feeling reassured of your future, and if no BMB is needed you will feel even better.

Susan

[Sunshine48]

I have the same issue with the anxiety... mine a little different then yours because crappy enough I did not respond to any of the medicine and I am getting a bmt.. So my anxiety is more in omg I might lose my life in this transplant, how can I ask my caregivers to give up their life to take care of me, how am i going to pay all my bills dI turing this and pay for lodging near the hospital, who'll watch my puppie, where will I work after, I'M GOING TO LOSE MY HAIR and independence and like I feel your anxiety pain. They had to put me on some monitors to make sure my heart was okay during all the panic attacks I was having.. I take adivan to help with the attacks and I take colonzapam at night, both are okay to take with Tasigna ;-). Can't say they help 100% but they do take the edge off sometiems... Talking about your anxiety or letting it out in writing or speak whatever you prefer is a good thing too.. My therapist said "whenever you're having an anxiety attack just start trying to talk out loud or recite something even if the pledge of allegence because it get's your brain focusing on something else rather then those nerve endings and will help shorten the feeling... Now this is harder to do then to say to do and of course my obvious question was doesn't talking outloud to yourself make you crazy??? Her reply was "yes normally, but I can cure crazy : )"...

I actually go to UOFM is that your normal doctor or are you flying out here from another state? They are a wonderful wonderful hospital and so amazing!!!! I see Dr Erba there who is another top CML specialist and he actually does the teachings to other doctors throughout the USA about Tasigna for Novatris (however you spell it) so if you can see him too he's amazing! I was refered right into him and I seriously LOVE HIM!!! If you have any questions about the hopstial or need someone to vent to feel free to message me : )...

[Judy2]

Hi Billie,

I hope you are able to find a bp med that you can tolerate, you don't need one more thing to worry about, you have enough on your plate already. Also, what  were you doing up at 4:00 AM? Plus, how old is dirt?

xo,

Judy

[hannibellemo]

For the most part after the initial panic subsided I didn't have too many issues. However, since the PE I can honestly say "drugs, wine (lots of wine) and moaning and groaning to all my BIFs on this site"! Helps tremendously! Thanks so much!

Pat

[Susan61]

HI Billie: I hope they find the right pill for your blood pressure.  Years ago when I was first diagnosed with hypertension, they were trying everything on me, and they either did not work or I would actually pass out from some of the pills.

I also do not tolerate medications very well in most cases.  I now have been on a combination of 2 pills.  I am on Toprol along with Benicar for quite sometime.  I was also put on these because they said it protects the kidneys.  I do have a kidney problem.  Past few visits to my doctor, and my BP was up.  I told her with all the stress in my life that nothing is going to work, therefore, I do not want to switch to another drug.  I want to see  what my BP reading is when I feel calm, and watch what I eat.

     Gosh!! We sure can go nuts with all these different problems and drugs to take.  Your sense of humor should keep your BP normal.  You seem to be able to laugh at so many things in the midst of all your health issues.  That is great.

I was told a good laugh can bring your BP down when its up.

[LivingWellWithCML]

I still deal with a fairly decent amount of anxiety after one year of treatment.  Things that work for me: exercise (cardio like biking, swimming, running with my favorite playlist blaring on my iPod), some red wine in the evenings, and I have a low dose of Klonopin for extremes ... Although I don't take it much because I don't want to rely on anti-anxiety meds.  Someone else on the board recommended transcendental meditation ... I have started looking into it but it's expensive to get trained, so I haven't pursued it yet.  Out of all of this, I really do find that rigorous exercise helps take my mind off CML and calms me a lot ... It's natural and keeps me in shape at the same time.  I hope this helps!

[Happycat]

For me, it's by establishing control over what I can affect. I can't control,how these damn CML cells will respond to gleevec, but I can make sure I take it every day!  Likewise, I might feel like crap, so when I feel good, I am teaching my girls to do more stuff around the house to help when I do feel too rotten to do much. We had a scrubbing pots and pans lesson the other night.

The real challenge has been planning for retirement. I used to plan out to 90 yrs. Now I'm not so sure!  I decided to go back to 90 this yr, and if I die earlier, my dh will be a well-off widower, able to woo the ladies at the senior center. He's a great dancer.  I know they will all love him, because every wedding we go to, he has all the old ladies dancing with him, lol!  I barely see him, he's so popular with the 55 and older set.

Traci

[Judy2]

Hi Billie,

Is the tiredness from the bp medicine supposed to subside over time? If not should you think about switching to another med? Billie, I know you joke around a lot but I am truly worried about you, you are going through so much. Please let me know if there is anything I can do to help.

xo,

Judy

[luvmybees24]

Thank you for the helpful reply and I really hope your BMT goes well! That is so scary to have to go through that...

[luvmybees24]

I started walking and it seems to focus my mind. When I feel myself started to freak out, I lace up my shoes and out I go! I usually come back with a new attitude.

[luvmybees24]

Wow! Good advice. I decided to write down what I CAN change and what I can't change and work on what I can and let go of what I can't.  Teaching your girls life lessons is a great idea. My mom taught me all kinds of things early. I was doing my own laundry at age 14 and I was amazed that I had friends in COLLEGE who had no clue how to do laundry.

Ha ha ha about the old ladies dancing with your husband.

[Judy2]

Hi Billie,

All I got from your last reply was that I'm getting older , everything else kind of blurred over.

xo.

Judy