23 replies to this topic

[Kittywatkins]

So I've typed here before with different subjects then I looked back and it all merged to the same issue. Because I was off if sprycel 100 for 2 months, I felt %100 better but paid for it. My pcr jumped by 2 logs or 3 not sure. I requested to go on 70 mg, I just couldn't take the side effects. But that changed quickly. She wants me on 100. It's been a month and back to bone pain, tired, headaches and now severe constipation. I look like I've aged by ten years since taking the meds. Long story short, I've applied fir disability and got denied. My lawyer says it's normal to get denied the first or second time. But he strongly suggest to get a letter from both my primary and Onc stating I am not able to work due to diagnosis and side effects. My primary treats me for my side effects. He's so companionate but my Onc refuses to type one. I mean really? She makes me feel like I'm faking everything. I've worked all my life and raised three children and was a multi tasker and now I just want to stay home and work on my getting healthier and better. I feel like Sloan Kettering is not my cup of tea. I'm going to change Oncs. But I need this letter like now. Who do they think they are? I'm so tired and desperate. I've been batteling these issues since I was diagnosed in 2012. Mind you I haven't listed ALL of my side effects. Even if they change the meds it's gonna take time plus the fact that I quit my job in August thinking I was going to change careers but oh well didn't realize the other job was not tolerating me calling out sick 2 weeks out of the month! I'm sooooo frustrated.

[CallMeLucky]

I know your doctor, she's very good if you are dying but not well suited to treat a chronic condition, just not her personality. Move on, there are other doctors out there who will treat you better for the long run.

[Kittywatkins]

Yes I'm doing that I'm definitely moving on. But I need that letter from her ASAP. I'm afraid if I change now it'll take that much longer to get the letter. I'm calling the other doctor and explain my situation first. Hey, you gave me advise before right? Callmelucky?

[Trey]

The disability issue is the least of your problems.  You need to get on a drug and stay on the highest dosage you can tolerate.  If you must reduce dosage, then reduce.  But you must get through the early side effects by staying on a drug, and the side effects will taper off over time.  If you don't stay on the TKI drug you will never get adjusted to it, and you could allow the disease to accelerate.  That is not a good scenario.

[Kittywatkins]

I've been on sprycel 100mg since 2012. Side effects never went away, not to mention my thyroid has been going wacky ever since I started this med. I stopped it in November for two months because I couldn't take the side effects anymore and then start sprycel 70mg. because pcr came back that high that fast she wants me on the 100mg not 70mg. I got more bloodwork done two weeks ago and waiting for results. Then we will talk about changing the meds to gleevac. My issue is not being compliant. I am very compliant. I changed my whole diet and excercise everyday even when I hurt. I take yoga 2 times a week and started the Zoloft to take the edge off. Then poof I'm down for a whole week or two. My issue is the quality of life that is not good for me at this moment to even think about work. In the meantime she should write that letter. I must say though because I was off of the med and everything went back to normal I feel like now I can control it without fresking out and assuming that I have other deadly issues. But reality for me right now is going on disability. I need to get healthy and have some kind of income coming in for now.

[Gail's]

My primary has overall been way more helpful with the side effects than my onc. I think it's because the primary knows me better. The onc too strongly believes people are able to cope with cml better than I am. Hopefully she doesn't see me as a slacker.

Past experience with social security disability for my husband was that only 1 dr letter was needed. Just have your primary write the letter. Soc security will have you meet with an independent dr anyway so not sure why 2 letters would be needed.

[CallMeLucky]

Yes I gave you a recommendation for another doctor in the past.

Is Sprycel the only drug you have ever been on?  Seems like you should just switch to Tasigna.

Again this is where your doctor has a philosophy that isn't that great.  She thinks if you are able to tolerate a drug (i.e. its not killing you, literally) then you should stay on it and not switch.  She believes you should only switch when a drug stops working that way you keep as many options available as you can for the longest period of time.  From a clinical stand point that probably makes sense, but we are real people who have to live on these drugs the other 89 days between office visits.  She never seemed to really appreciate that.

On the other hand, most of her patients probably do very well if you look at survival and don't factor in quality of life.

[Kittywatkins]

I made an appointment with dr jurcic for May. I want to go to my last appt in April to Sloan and get my records. I had such a disheartening conversation with her nurse yesterday. She made me feel like I'm faking my symptoms and she was quick to dismiss me when I was asking why can't they type a simple letter for me. I hung up and broke down in tears. I then called the other doctor and what a difference with personalities with the receptionist alone. She was so friendly. I strongly believe in bedside manners and common courtesy starting from doormen to phlobotomist to secretary to nurse to doctors! If you can't have that personality you don't belong in a cancer center!!!

[Billie Murawski]

Kitty,

You should make a big sign that says that and hang it up in the cancer center. I like

Compassion, Use it or lose it along with your job!

[pammartin]

Kitty, My oncologist did not sign my papers either. He is under the impression we can move and keep going with the side effects and disease. For many this may be true, I was denied my letter while I was sitting in exam room with my constant friend, my bucket for the random but frequent projectile stomach revolt. (In all fairness this was during the first months of treatment)

After the PH diagnosis, they filled out the papers and sent confirmation to Cleveland Clinic, where I am usually sent once a year or so. Between Pittsburgh Presby and Cleveland Clinic they completed my paperwork.

One important, very important, point. I was labeled as disabled in Jan of 2014. There is a five month hiatus until your first disability check arrives. Then you have to wait 24 months ( or two years ) before your medicaid is available. We pay $624 a month for my BC/BS (that is just mine). Make sure you have a health care plan that does not include SSD for two years upon receiving your disability award. If you are low income, government assistance programs will apply, but they are sticklers for crossing It's and dotting I's.

If you receive medicaid after the two years you will still need a suppliment policy, medicaid only pays for about 80% of costs. I have 7 more months before I qualify for medicaid, not sure if I am comfortable or anxious about the changes.

Good luck.

[Kittywatkins]

Kitty, My oncologist did not sign my papers either. He is under the impression we can move and keep going with the side effects and disease. For many this may be true, I was denied my letter while I was sitting in exam room with my constant friend, my bucket for the random but frequent projectile stomach revolt. (In all fairness this was during the first months of treatment)
After the PH diagnosis, they filled out the papers and sent confirmation to Cleveland Clinic, where I am usually sent once a year or so. Between Pittsburgh Presby and Cleveland Clinic they completed my paperwork.
One important, very important, point. I was labeled as disabled in Jan of 2014. There is a five month hiatus until your first disability check arrives. Then you have to wait 24 months ( or two years ) before your medicaid is available. We pay $624 a month for my BC/BS (that is just mine). Make sure you have a health care plan that does not include SSD for two years upon receiving your disability award. If you are low income, government assistance programs will apply, but they are sticklers for crossing It's and dotting I's.
If you receive medicaid after the two years you will still need a suppliment policy, medicaid only pays for about 80% of costs. I have 7 more months before I qualify for medicaid, not sure if I am comfortable or anxious about the changes.
Good luck.

Thanks for this information. I'm under my husbands insurance. Let's see what will happen?

[ricodence]

Thanks for this information. I'm under my husbands insurance. Let's see what will happen?

 

I've been on sprycel 100mg since 2012. Side effects never went away, not to mention my thyroid has been going wacky ever since I started this med. I stopped it in November for two months because I couldn't take the side effects anymore and then start sprycel 70mg. because pcr came back that high that fast she wants me on the 100mg not 70mg. I got more bloodwork done two weeks ago and waiting for results. Then we will talk about changing the meds to gleevac. My issue is not being compliant. I am very compliant. I changed my whole diet and excercise everyday even when I hurt. I take yoga 2 times a week and started the Zoloft to take the edge off. Then poof I'm down for a whole week or two. My issue is the quality of life that is not good for me at this moment to even think about work. In the meantime she should write that letter. I must say though because I was off of the med and everything went back to normal I feel like now I can control it without fresking out and assuming that I have other deadly issues. But reality for me right now is going on disability. I need to get healthy and have some kind of income coming in for now.

Did you look in to nutrition to help with side effects? I read you eat well,  something I read in other post we tend to lack vitmen d3.  I happend to take vitamen d on a regual bases now.  I also juice.  I use beets, carrots, and apples in a juicer.  I am taking sprycel.  My side effects are stinky gas and incomplete bowl movements.

[Billie Murawski]

Hi ricodence, Don't you just hate when that happens, I get the same side-effects and I don't take vit D3.  I've thought about getting a juicer but In the last seven years I've spent most of my time in the bathroom. I don't think my septic tank could handle anymore.

[Kittywatkins]

Oh yes ricodense, I was juicing everyday but sold it and bought a nutribullet. I love my green smoothies instead. I do like the beets carrots and apple in a juicer and I miss that. And yes my vit d level was extremely low. But I take it every day now and boy what a difference. I can now go to the gym and not cry while working out. But the weird thing is where my bmb was done hurts all the time. Since 2012. Especially when it rains or it's cold. I got say though, if it weren't for this site, I would've died of depression. You guys are great with all of your information! All we can do is fight and keep fighting.

[Dona_B]

Kitty,

Thank you for sharing about the pain at your BMB site! My doctors, even my husband don't believe me. He thinks it's from my herniated/bulging disks. My chiropractor believes it to be a combination of previous issues and the BMB. (I've had two and am dodging the third for now.) My onc. believes the BMB is only way to monitor the Philiadelphia chromosome. I can relate to your frustration. I felt better last year when I was 5 months into my diagnosis. Michele at http://www.leukemiasurvivor.co/ has a post somewhere in there encouraging CML patients to log in their side effects and goes as far as to monitor side effects with regard to each batch of medication. I haven't done that because it seems my symptons could be from other issues like age but maybe not. It's also frustrating when the onc dismisses them and to be asked how I am feeling by friends and be told well you look good. I always wondered why people post on FB about looking well and chronic conditions keep them from doing all they want. Not only can I relate but I'm almost ready to post one on my wall. I would love to volunteer but never know ahead of time if I will feel like it. Btw, I'm not working this summer. I had three seasonal jobs with breaks between but they were better than nothing. But am not returning to the second due to back/anemia issues.

 

I'm sorry I have no advice on applying for disability.

[ricodence]

Hi ricodence, Don't you just hate when that happens, I get the same side-effects and I don't take vit D3.  I've thought about getting a juicer but In the last seven years I've spent most of my time in the bathroom. I don't think my septic tank could handle anymore.

Billie Murawski YEa I hate it..  I dont know how to tell my a boss it is embarrasing.  I go to the bathroom, now it feels like it takes for ever to clean then.  I have to go again. Sometime this happend like 3 times.  I am thinking about buying wipes.. 

[ricodence]

Oh yes ricodense, I was juicing everyday but sold it and bought a nutribullet. I love my green smoothies instead. I do like the beets carrots and apple in a juicer and I miss that. And yes my vit d level was extremely low. But I take it every day now and boy what a difference. I can now go to the gym and not cry while working out. But the weird thing is where my bmb was done hurts all the time. Since 2012. Especially when it rains or it's cold. I got say though, if it weren't for this site, I would've died of depression. You guys are great with all of your information! All we can do is fight and keep fighting.

Welcome  Kittywatkins The juiceing helps you can buy a cheep one from JC pennies for 50.00   Also try adding flax seed to the diet.  Increase fiber might help

[Billie Murawski]

Kitty,

Thank you for sharing about the pain at your BMB site! My doctors, even my husband don't believe me. He thinks it's from my herniated/bulging disks. My chiropractor believes it to be a combination of previous issues and the BMB. (I've had two and am dodging the third for now.) My onc. believes the BMB is only way to monitor the Philiadelphia chromosome. I can relate to your frustration. I felt better last year when I was 5 months into my diagnosis. Michele at http://www.leukemiasurvivor.co/ has a post somewhere in there encouraging CML patients to log in their side effects and goes as far as to monitor side effects with regard to each batch of medication. I haven't done that because it seems my symptons could be from other issues like age but maybe not. It's also frustrating when the onc dismisses them and to be asked how I am feeling by friends and be told well you look good. I always wondered why people post on FB about looking well and chronic conditions keep them from doing all they want. Not only can I relate but I'm almost ready to post one on my wall. I would love to volunteer but never know ahead of time if I will feel like it. Btw, I'm not working this summer. I had three seasonal jobs with breaks between but they were better than nothing. But am not returning to the second due to back/anemia issues.

 

I'm sorry I have no advice on applying for disability.

Hi Donna, I don't know why you need another bmb if everything is going okay with you. I had a bmb & bma at dx and that was the only one, my onc will occasionally order different kinds of bloodwork which I don't understand what it means but it's been seven years for me and he seems to get all his answers just from bw. I have the phil chromo too I think most of us do. When your onc says you need another bmb just tell him you go first!.             Billie

[Billie Murawski]

Kitty, A green smoothie? Seriously? Gross me out and gag me with a spoon.

[Billie Murawski]

Billie Murawski YEa I hate it..  I dont know how to tell my a boss it is embarrasing.  I go to the bathroom, now it feels like it takes for ever to clean then.  I have to go again. Sometime this happend like 3 times.  I am thinking about buying wipes.. 

rico, You can go to walmart and go down one aisle and buy everything you need wipes depends hemmoroid cream immodium gas-x maalox  I guess you'll need a backpack to carry all that stuff to work. You would not believe what I take to Florida,well I'm not going to spend my vacation money at cvs!