17 replies to this topic

[Jerry.s]

I use to think I was superman, nothing could ever happen to me . Now I feel so fragile, every side effect becomes a new form of Cancer. 

 

Week one I convinced myself that my heart could not take the Gleevec and that I was going to Die that night. I called the Doctor and they ordered a CT Scan which was a just a waste of money because it was perfectly fine.

 

Week two I felt really tired and so I thought i was going to lose my job and my house.

 

Week three, I started feeling a lump on my back that felt like a sore muscle so I thought my Kidneys were failing.

 

Week four , I didn't think my CBC results were good enough because I needed a IV for my low blood potassium, so now  I am going to die because I can't take the medication.  Doctor gave me some potassium pills that even out my potassium.

 

Week 5 I feel a sharp pain in my side so I think its my Pancreas and again I think I am gonna die..

I didn't sleep for a whole night doing research on other Cancers

 

Week 6 was actually pretty good mostly

 

Week 7 My pain in the side pain get worst so I think I have everything from a bad Spleen,Pancreas, stomach Cancer.  So today I went in for a second CT scan for my side pain and stomach pain hopefully I'll  get good results..

 

I am worried all the time and my Anxiety is horrible and controlling my Life .  I read my Bible and pray and that helps a lot . I need advise on how to control this with out any other pills ...

 

I need to know how long the worry will last.

 

This forum has been great to me but I need your help again.

 

thank you 

 

 

[rcase13]

We are in the exact same place. I even have same side pain. There is no doubt I was not cut out for this. I worry everyday. I have no clue how not to worry. I just try to stay busy. I also bought a reduculous new car. My 12 year old said to buy it so I did. Maybe I will see if I can get a personalized plate... STPDCNCR

[Jerry.s]

Thanks rcase13 its reassuring that I am not the only one going through all this.  I bet we get more people telling us thier story and maybe how to cope without going without sleep or buying crazy cars..  

[LivingWellWithCML]

Hang in there - we know exactly how you feel!  I went through the same phase ... I'll share a little bit of my journey to help:

 

If I knew then what I knew now, I would've been so much calmer in the early months of treatment (I'm four years into Gleevec 400mg).  Every pain, lump, bruise, etc. drove total anxiety and paranoid thinking that (at times) completely crippled me ... and even worse, caused my family a lot of unnecessary grief.  Week 1, I thought I was going to crumble and die at any moment.  Week 2, I thought my liver was going to fail.  Week 3, I thought my neutrophil count would drop to 0 and kill me, etc.  Sound familiar?

 

Short story - Most of us went through the very same phase that you're going through now, so we know how you feel.  But repeat after me: "It's going to be okay ... control what I can control and move on with my life."  Write that on a piece of paper, laminate it and put it under your pillow.  It will help!  One of the first pieces of advice I received in the beginning of my CML journey was "chill and take the pill".  That is the part that we can control, so we do that diligently, build a trusting relationship with a great care team, and we move on with life as we adjust to our "new normal".

 

For me personally, it took about 9 months to finally calm down (for the most part).  What worked (and continues to work) for me:

 

1. Exercise - Anything: walking, running, cycling, gym, yoga, stretching, etc.  It's a great way to calm the mind and it's a good treatment monitor as well.  If you're breathing well and able to exercise and stay in shape, then it builds confidence in your mind that you're going to outlive CML.  Find something that works for you and get into the routine.  Just take it easy and don't push yourself too hard.  I went a bit overboard and have suffered some injuries from intense running and road cycling, so an important lesson learned there - we generally heal slower when on TKI medications, so know your limits.

 

2. Wellness Appointment - Check with your onc and learn more about wellness specialists.  I am treated at Emory in Atlanta, and they have a wonderful team that works with cancer patients on wellness plans.  Some of their recommendations helped, some didn't, but I believe their approach to treatment (always mind/soul first, and medication only if absolutely needed) was a huge help for me.  This is a chronic condition, so I felt it was important to pursue expert advice in this area so I could figure out how to live with this monkey on my back.

 

3. Meditation - I am very bad at this , but I do incorporate breathing exercises into my daily protocol that help calm the mind on a daily basis.  An easy one to start with: If you start to feel a bit anxious, try putting a finger on one nostril, breathe in slow and deep, remove the finger and breathe out fully, cover the other nostril, breathe in deep, remove the finger, and breathe out slowly (eyes closed, and finger "on" the nostril and not "in" the nostril, hahaha).  Someone taught me this technique and I do find that it helps.

 

4. Medication - It's okay to consider some medication as an initial course of treatment to help balance/reset the chemicals in the brain and condition you to treat your own anxiety - the goal is to avoid a dependency on it.  Even after four years, I sometimes use a little bit of medication if I feel like I'm losing the battle, and it can quickly get me over the hump (while working on 1, 2, 3).  I have not encountered any drug interaction issues with Gleevec.

 

I hope this helps!

[JPD]

"Take the pill, live your life"

 

Livingwell pretty well nailed it.

 

You are suffering from anxiety and/or panic attacks (it sounds like) - exercise, meditation (relaxation exercises), and medication if neccesary.  I think you should at least discuss medication with your doctor.

 

The bad news is that you have CML and you will die someday.  However, the CML will most likely not lead to your death thanks to the TKIs.  Everyone here has been handed a shitty hand, but we've also been blessed by the development of drugs that will allow the vast majority of us to lead nearly normal lifespans.

 

Im also a big believer in mantras/affirmations.  When I was real shaky, I would tell myself "the meds are working, the cancers dying, and I will live to see a cure" ... repeat that or something like it every time you pass a mirror and it'll start to work.

[TeddyB]

Jerry: Ive been there myself, read the good advice from the people on this board.

 

The first 6 months or so were the worst for me, everything was new and scary, i felt like i had to learn how to walk again from scratch. The new me took some getting use to, im in a good place right now in regards to anxiety, but side effects do kick my ass from time to time. Try to appreciate every good thing in life more, and try to put the bad in the back of your mind, and dont let it stay in drivers seat. It gets better over time, hang in there.

[Jerry.s]

Thank you for your advice and great technics to reduce my Anxiety . I will repeat these technics as many times as I need too.  I try to tell myself this stuff all the time but i need to do it more often.  Thank you again for your experience this horrible thing called CML.

[mlk210]

Oh Jerry, I'm sitting in that boat right next to you. I feel like I put my family on a roller coaster since my diagnosis. I started my treatment in August and I've been to the ER twice, two CT scans as well. Went in for shortness of breath and the scan found a nodule in my thyroid which turned out to be cancer. So, I've had two cancer diagnosis in four months. The funny part is having the thyroidectomy and dealing with that actually took my mind off of the CML. I just took my Sprycel and kept googling about the thyroid instead of blood counts. I've been fortunate enough to have two of "the best cancers". Not that I'm complaining, I am fortunate not to have to go through what others that get a cancer diagnosis do. Not that I didn't tell my husband that if they opened me up right then, my body would be filled with cancer (I've come back down from that illogical thinking).

 

I obsess about everything, always have, even before CML. But it's an all time high now. I'm actually starting to get embarrassed going to the doctor after I swore something was wrong, only to come out okay after. I second guess every twinge, or tweak from my body, sending my mind into a frenzy of delusional beliefs. Then I go to the computer and search and search. Not even sure what I hope to find, maybe that my crazy self diagnosis is correct. Of course, then I fear the one time I don't go in, or don't call attention to something, it will actually be something.

 

Before you think I'm crazy, I wanted to tell you how I've started to deal with it. I'm a writer, which makes it hard for me to sit in front of a computer all day and not google my ailments until my mind goes numb. After the thyroid cancer diagnosis, I decided to do what I love- I wrote. I sat in front of my computer while I was alone in the house, and allowed my fingers to go. I typed out everything and anything that came to my mind in that instant. The ridiculous, the why me's, the selfishness, and the blessings in my life. Afterwards, I sat there with handfuls of tissues, bloodshot eyes and a blotchy face, but I felt good. I saved it under some disguised name because that's only for me to see and read again. Then one day, I felt almost like myself so I wrote again, this time positive. I don't write in it everyday, just when I need to get it out. I've gone back and read what I wrote on a few occasions to remind myself of the good, and the bad.  

 

I know writing isn't for everyone though, but try to find an outlet. My family needed a sense of normalcy in their life. My husband is so supportive, and allows me to vent as much as I need too, but my kids were losing the mother they knew. When they would talk, I'd only half pay attention because I was lost in my head somewhere. I'd complain about some pain in my body to my husband and my five year old would tell me he had the same thing. Any conversation with my husband or my family, entailed my health. If it didn't, I'd turn it that way. I was letting it control me (not to say it doesn't still), but I had to gain upper hand over it. I think that was the hardest thing with this disease, I'm a control freak and this was something so out of my hands, that it crippled me. Then add in instant gratification and impatience, only to compound it. 

 

That's my story. You're not alone Jerry! I go in on Monday for my three month results and I'm so scared and excited at the same time. That instant gratification part of me wants to be where the veterans are. To know all will be well, but I remind myself that they already paid their dues!

 

I'm thankful for this group! It's gotten me through some bad days!!

[Jerry.s]

Thank you mlk210

 

 

I want to finish this incase some one the future may need to read this.  I went in for my second CT scan and it everything looks cherry . My spleen has come back to normal size and the pain I was feeling was because its sore from the shrinking. Thank you everyone for all your advice.

[rcase13]

Hopefully my pain is the same thing. Thanks for responding.

[mlk210]

Oh that's great news Jerry! I hope that eases the worry for a little while!! Thanks for the update.

[CallMeLucky]

Wow it's hard to read what you wrote because it was so similar for me, I empathize with your feelings. I'm 4+ years in and I would love to tell you gets a lot better. It gets better but for me I still suffer greatly with the anxiety. Everything you have been told by the others is pretty much spot on so I won't repeat. The things I'll add is that learning about why my mind behaves the way it does can be therapeutic for me. There are books I will recommend if you are interest d in checking them out. 'Buddha's Brain' and 'My Age of Anxiety'. You don't have to be a Buddhist to read the first book it's actually about neurology and why our brains work the way they do particularly with how they respond to stress. The second book is a true story about a famous TV personality who suffers from anxiety.

Remember that everything rises and falls. Remember when you are feeling bad that it will pass and you will be happy again and know that the happiness will pass and you will be stressed again only to repeat the cycle over and over again. That is being human.
I wish you great peace.

[hannibellemo]

Welcome to CML normal!

 

Just know we all go through it. Then, when you get used to your WBCs and RBCs running slightly below normal for several years and all of a sudden they rise into the low normal range you get to worry that the TKI has stopped working and you are on the slippery sloop careening uncontrollably to failure! You aren't, but nothing I can say will convince you of that. You just have to experience survival on your own terms.

 

My CML mantra, "That which does not kill me, makes me strong". Goethe

 

I must be really strong now because I was convinced everything was going to kill me in the beginning.

 

Breathe!

 

Pat

[jmoorhou]

We all have been there...the aches the pains....is it spleen, liver or worse pancreas.  The spleen pain (six months) does go away as do most of the other pains. But it's hard to believe when you've just started.  The first six months I was in the ER three times.

 

Exercise helps to oxygenate you.

 

And finding a good Naturopath can help with B12 shots.

 

I have avoided MRIs....I don't want to know...

 

Remember don't blame everything on the TKI, because most of the time it won't be the TKI.

[jmoorhou]

I've solved the blood shot eyes by taking two tea bags each morning soaking them in very hot tap water, then put in freezer, when they are very cold put them over your eyes for at least 15 mins.

 

And if you can stand it drip some of the "tea"into your eyes, best eye drop ever, your eyes will clear.

 

And for the bags that might be forming.....take an egg white, beat it to a froth, then apply under eye, as the foam dries it tightens the skin , it really works, like Botox, I am not kidding, all day....  And I massage my eyes with coffee bean cream I got at Amazon.

 

Now after 9 months, except for a bag under one eye, my eyes are normal!

[winespritzer]

Dear Jerry,

I have had CML for 10 mos.  Within my 1st 24 hrs, while awaiting the test results, I cleaned out all my drawers and closets; I filled 20 bags for Goodwill; in the next 24 hrs I put together a  notebook for my husband of what to do when I die.

Then I found this forum and it saved my sanity.

The  Sprycel really kicked in and I actually stayed alive. Then I did big time fundraising for cancer.  

I joined a LiveStrong group which focuses on exercise and somehow all the crappy exercising with accompanying PAIN has brought me to a much better place.  I am actually less, less stressed.

I am amazed and happy to be sort of eating normal again.

I know something else will bring me down in the end and it won't be CML!

Lucky to be hitting 71 soon.

Happy Thanksgiving. You'll be OK.   We're all really blessed.

Winespritzer

[Susan61]

Hi Jerry:  The first thing is that you do read your Bible, but you have to believe what you read and follow the instructions.  We are not promised a tomorrow no matter what we have going on.  We all go through these feelings.  You never forget when your told you have LEUKEMIA.  I was told 2 weeks before Christmas back in 1998, so I started to feel that I better really enjoy my Holiday with my family because its probably my last Christmas with them.  So every year after that I started to count how many Christmas Holidays I got to be with my family.  Well, this Christmas will be # 16 for me.  There are others who have survived CML for more than 20 years.

     When you get upset, just remember that there were no Target Therapy treatments back in 1998.  I started out with Interferon and Ara-C shots to the point where it was destroying my liver, but not getting to the CML.  I started Gleevec in Oct. of 2000, and still on it to this day.

      I have so many  health problems, and I have put my CML on the back shelf as its the least of my troubles right now.

      You can send me a private message anytime your feeling low, and I will be glad to help you out   I will also keep praying for you, as thats the best medicine we could have.

God Bless You

Susan

[pammartin]

I can't tell you how long you will feel this way but I can tell you your feelings are similar to what I experienced during the first year after my diagnosis.  I had myself convinced at one point the doctors had to be wrong because I felt better before I was diagnosed.  I blamed all my symptoms  and problems on the Sprycel.  It seems strange to write this but one day months after I was undetectable I realized I didn't think about it constantly anymore.  Everyone on this board told me that was how it would be, but I didn't believe it would happen.  They were right. 

 

The greatest day I can remember was when I actually forgot to take my med for a few hours, there was a time when I was anal about taking it at 5 p.m. 

 

This is a weird disease, but it is manageable and this site is one of the main reasons why I got through all those rough months.  No one understands what you are going through like someone who has been through a similar experience.  I still get nervous around testing time and the days till I get my results drive me nuts but then I settle down till the next round.  Many on here have tests that vary and 'blips' show possible loss of response, I haven't experienced that yet but I am sure it will drive me crazy if I do. 

 

Take care and remember we are all here to help you get through the good and bad times.  In time you will be telling a newbie everything will be ok and offering the support you were looking for when you first were diagnosed. 

 

That is one of the greatest aspects of this site, it doesn't matter if you are newly diagnosed or are a seasoned responder, there is always support and a place for us to receive and offer support.

Pam