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#1 Janezlane

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Posted 21 April 2011 - 07:59 PM

Hello everyone,

My name is Shiela, I am 25 years old and just recently (March 14, 2011) my husband got diagnosed with CML two weeks before his 27th birthday. We had just gotten married last August, living on our own, and I just started a new job while he was finishing up a few more classes to get his massage license, so the news was completely overwhelming. At that time I knew very little about CML - I've only heard stories, saw movies, etc., so I've been doing a bit of research here and there. During his first blood check, my husband had a wbc count of 270,000 and after 4 weeks on Tasigna, his count is now back to normal. I had no idea though that he would be taking Tasigna long term and he is under my insurance but we would still have to pay about $4,000/month. This is impossible for us, especially with just one income. So, we moved in with his mom so we could save money. We have filed for my husband to get disability, looked into some organizations, talked to various people. I just wonder - what else can we do to get financial support? Any advice is greatly appreciated!

~Shiela



#2 Guest_billronm_*

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Posted 21 April 2011 - 09:29 PM

Hi Shiela,

I'm so sorry about your husband. But welcome to our group wish you didn't have to be here.

Any info you need you will find on this site. Don't be surprised if ssi turns you down they turn everybody down the first even second time Just keep sending in those appeals. I think they just want people to stop trying. If you go to a cancer center ask the social worker there,they can lead you in the right direction sometimes. Call the american cancer society.the leukemia lymphoma society, I know some people buy their drugs from the manufacturer.Even try medicaid if they approve him that covers all his medical bills and prescriptions. There are many people on this site that can probably tell you more. Don't panic about that something will come up. Just concentrate on helping your husband, and taking care of yourself. There are probably more people on this site that know more than you're oncologist knows.

I have had cml for almost 4 years now I was on Gleevac 3 years. I just switched to Sprycel a couple of months ago. There are side effects to every tki drug we have to take. It takes our bodys a while to get used to the meds. But most of them do go away. The biggest complaint we all have is fatigue.Not all some guys are running marathons one woman rides a motorcycle. some work full time. I have heard Tasigma has the fewest side effects then the other 2.Remember cml is controllable it's not a death sentence.Your hubby will live a long time. When he gets lot's older chances are something else will get him like old age.You're lives will change some we call it the new normal.This is a great place to vent, obtain knowledge,joke around even discuss the most intimate details of the side-effects. No subject is untouched those are nights we usually have fun, because we all have dealt with these problems at one time or another, so don't be afraid to jump in anytime or be embarrased about a subject.    We All Have Been There! SSI is Retroactive from the day you first apply.

                 Good Luck to you both tell you're hubby to join in too. We have a lot of people on this site that take care of their spouses.It's help me a lot.

                                                                                        Billie



#3 Susan61

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Posted 21 April 2011 - 10:18 PM

Hi Sheila:  Billie gave you a pretty good idea of how everything works with regard to where you can go to get help etc.  We do have so many knowledgable people on here who have gone through it all.  I will not repeat all the information you already got.  If you  husband is under your insurance, then they should cover him as long as he was insured with your company before his diagnosis.  I am under my husbands insurance, and we do have co-pays for our medications.  I am on Gleevec, which was the first TKI drug before Tasigna and all the others.  I pay a co-pay for a 90 day supply at a time of $80.00, and then my regular co-pays for doctors visits etc.  You said you have to pay $4000.00.  I guess it depends on your type of insurance, or maybe you did not look into all the different coverage he might have.

     Let me say that I am glad you reached out to talk to us in this group. Take one day at a time, or it can become so overwhelming trying to absorb every little thing.  Just keep in mind that CML is so treatable now.  I was diagnosed in 1998, and the treatments that we have now did not exist when I got CML.  I did some old fashioned treatment, which did not work for me.  I am doing just fine now, and its 12 years for me.  I just started year #13 this past Dec.  So keep that in mind.

   Like Billie said, it would be good if your husband could get onto the discussion board himself.  He will get a lot out of it, and everyone is so friendly and always ready to help you out.  We even have some laughs once in awhile, as we have some real good sense of humor amongst us.

  I am always available, and If I am not on the boards you can always send me a e-mail.  You both will be just fine.

  Everyone is struggling with finances just due to this horrible economy.  You do not even need a disease to be stuggling.  We are all in it together, and hope we see some new and better things happening soon.

  As for the disability, maybe your husband will feel well enough after he is on his treatment for awhile and be able to work.  I do not know where you live, but he might be able to go on temporary disability first to see how he does.

  See what you can find out before you go into a panic over everything.

Susan 61



#4 Guest_billronm_*

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Posted 22 April 2011 - 12:31 AM

Hi Susan,

How are you feeling? Is it getting better or are you still just going day by day? You're always in my prayers.

I can't think of anymore agencys out there to help Sheila and her Husband. This problem comes up a lot on the board. Hopefully someone can help them.

                                                                                      Sheila keep us updated and we'll keep looking. Stay Strong Billie



#5 Janezlane

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Posted 22 April 2011 - 12:40 AM

Thank you, Billie and Susan! I will definitely look into those options. Thankfully, his doc gave him 3 months worth of Tasigna for free while we look into other places. He had an appointment today and the doc said his counts are back to normal and he is on the road to remission and she estimates that he could be able to work again in October. I just want to be as supportive as I could be and help him in any way he can.



#6 Guest_billronm_*

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Posted 22 April 2011 - 12:57 AM

Dear Sheila,

We're with you all the way.

God Bless Billie



#7 Vandyfan

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Posted 22 April 2011 - 07:40 AM

Sheila, I'm new to the site myself.  Let me offer this encouragement to you and your husband.   He can most certainly work and be very productive.   I was diagnosed a year ago; at nearly 60 I am still able to work part-time.   The key is letting your employer know what your limits are and being willing to work around those limits in the interests both of your employer and yourself.  Employers treasure a responsible, dependable, and honest employee.   When that employee brings skill and a positive can-do attitude, that is all the better.

Fifteen years ago we would get a death sentence with CML.  Now we get commuted to life.   What a blessing and opportunity!   I hope you and your husband can build on this and use this terrible disease as a means to enrich and expand your lives together, not as a weight or anything that holds you back.  Choose life.



#8 HeatherZ

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Posted 22 April 2011 - 08:33 AM

Welcome tou group Sheila.  I am 38 and was diagnosed in March of 2010.  I have been on Gleevec since diagnosis.  The first couple of months were tough for me as I adjusted to the side effects and my new normal.  I was working full time but after 6 weeks on the Gleevec it became too much.  I ended up taking about 9 weeks of short term disability from my employer which turned out to be a wonderful thing.  I was able to sleep extra when I needed to and get some excercise when I had the energy to.  Since being back to work (end of August 2010) I have only missed a few hours of work due to illness (I had a migrane last month) so I am convinced the time off allowed my body to regroup and fight the nasty stuff even better.  I am working full time and I also struggle with anemia so I am tired a lot.  This group is great in terms of knowledge and support.  Hang in there and visit often!

Heather



#9 hannibellemo

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Posted 22 April 2011 - 08:37 AM

Hi, Sheila,

Welcome to the club no one wants to join! (Sorry if I'm repeating what has already been said.)

I would like to approach this from a different direction. How is your husband doing on Tasigna( besides his counts, those sound really good)? Does he have a lot of side effects? I ask this because I'm surprised that your onc set a "timeline" as to when he could go back to work.

Unless your onc has given you another medical reason, he can go back to work/school, or look for a job, as soon as he feels up to it. I went back to work in a couple of weeks after I was dxed and my RBC recovered. I was off for another week when I switched to Sprycel a few months later and a day or two here and there because it was tougher for me to adapt to Sprycel then Gleevec, not because my onc told me I needed to be off.

It's one thing if your husband really feels like crap, but it's another if this is some arbitrary timeline his onc gave him. I would at least ask your onc why your husband would need to stay off work IF he feels up to working.

Also, talk to HR about your insurance. I was way dumb about mine and figured since I didn't have a drug plan I was screwed. I used my husband's, but when his job was eliminated shortly after I was diagnosed I had to smarten up pretty fast, discovered my insurance was much better than I thought!

You may have a cancer "navigator" at your cancer center - be sure and look into all your resources.

Good luck to you and your husband!

Pat


Pat

 

"You can't change the direction of the wind but you can adjust your sails."

DX 12/08; Gleevec 400mg; liver toxicity; Sprycel 100mg.; CCyR 4/10; MMR 8/10; Pleural Effusion 2/12; Sprycel 50mg. Maintaining MMR; 2/15 PCRU; 8/16 drifting in and out of undetected like a wave meeting the shore. Retired 12/23/2016! 18 months of PCRU, most recent at Mayo on 7/25/17 was negative at their new sensitivity reporting of 0.003.<p>


#10 Taylor

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Posted 22 April 2011 - 10:47 AM

Hello Shiela,

I was somewhat in the same boat.  I'm 24 and got diagnosed January 31st (I had WBC of 230,000).  I started Tasigna on 2/8 and I didn't have any insurance.  I was hired for a job that started 2/10 but my insurance here doesn't kick in until 5/1.

My onc and his team are great and they have their own pharmacy, so they gave me about three weeks worth of samples.  In the mean time I applied for assistance with Novartis' help line.  Since I was a student before dx I had no insurance or savings, so Novartis has given me at least 7 months of medicine until and then they'll stop since my insurance will kick in.

Please call them at 1-866-884-5906, I think that's the patient assistance line.  I was really worried because pharmaceutical companies have a really bad rap just with how our country's medical systems work, but they were super friendly and give me one month at a time and always UPS it to me about three weeks before I need my next batch.  Just fill out some easy paperwork and they may help you in some way.

Good luck!

Taylor



#11 bsbk13

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Posted 22 April 2011 - 04:48 PM

Hi Sheila....I'm also the spouse of a CML patient...we're actually not married, but whatever...after 35 years, I think that counts!

Not that anyone wants to be diagnosed with cancer, but the whole scenario is changing so fast, with so many new and exciting drugs & treatments coming up.  As an example, 2 months ago, Bill had run out of treatment options and was down to one last drug, which isn't even available yet.  He has started the drug trial and is doing so much better (still has a long way to go), and just in that time frame I've learned about at least 2 new treatments that are being tested already!  The feeling that we had hit the bottom of the barrel is gone.

Also, I'm wondering if your husband might consider a job where he can work from home?  I think most patients have high-fatigue days that are unpredictable, but if they could work from a laptop, they could probably be pretty productive even on down days.  Bill Hays' advice about talking honestly with his employer is great too.  Nobody WANTS to lose a good employee and will often be much more flexible than you'd think.

Agree with Pat!  I don't think there's any way even an oncologist can predict how good/bad your husband will feel in a week, a month, or 6 months.  Don't let that become a self-fulfilling prophecy.

Great, Taylor!!!!  Glad you're getting help and sounds like that's the ticket for Sheila & husband too.

Beth



#12 Susan61

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Posted 22 April 2011 - 04:51 PM

HI Billie:  I am feeling pretty good today.  Thank You for asking.  I do try to think of as many things as I can to help also, but everyone's situation is different.

Also everyone is from all over in different states, therefore, things do not always work like they do where you live.  All we can do is make suggestions.

Hope your doing good too.  Have a Happy Holiday.

Susan 61



#13 Happycat

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Posted 23 April 2011 - 10:51 AM

Hi, Sheila,

Sorry about your dh's CML.  New to the site myself, just dx'd in early April, so we will be learning the in and outs together.  Very interested in the insurance aspect of your post, since my dh would like to get find a new job, but I'm under his insurance, so not sure what my options would be for coverage.  I know my employer is "self-insured", which means they can get out of paying for a lot of things!  Hence, we don't have that insurance.  I will be talking with someone at HR next week about this, and other things.

Hope your dh adjusts quickly to the meds!

Traci



#14 smbutters

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Posted 26 April 2011 - 12:21 AM

Hi Sheila - I just wanted to say Hi as I am also a young (I still consider 33 young!) wife of a 34 yr old husband who was diagnosed 6 mos ago.  He started on Gleevec, 400 mg, and has his next bone marrow biopsy next week.  He is responding very well to his medication with minor side effects as compared to others that I have read about.  Just wanted to lend some support and encouragement and offer my email anytime you need it. 

Take care -

Steph  



#15 CallMeLucky

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Posted 26 April 2011 - 10:49 AM

Welcome and sorry to see you are here.  I am 38, was diagnosed last June.  I am on Gleevec and doing pretty well.  Some side effects, but I get through it most days.  I work full time, I am married and have two young boys.  I haven't had to miss any work accept for Dr appt.  Everyone's journey is different, but having youth on his side can be an asset in this battle.

Best of luck.


Date  -  Lab  -  Scale  -  Drug  -  Dosage MG  - PCR
2010/Jul -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 1.2%
2010/Oct -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.25%
2010/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.367%
2011/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.0081%
2011/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2011/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.00084%
2011/Dec -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Mar -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0.004%
2012/Jun -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Sep -  MSKCC  -  Non-IS  -  Gleevec  - 400 - 0%
2012/Dec -  MSKCC  -  Non-IS  -  Sprycel  - 100 - 0%
2013/Jan -  Quest  -  IS  -  Sprycel  -  50-60-70  - 0%
2013/Mar -  Quest  -  IS  -  Sprycel  -  60-70  - 0%
2013/Apr -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.036%
2013/May -  CUMC  -  Non-IS  -  Sprycel  - 50 - 0.046%
2013/Jun -  Genoptix  -  IS  -  Sprycel  - 50 - 0.0239%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0192%
2013/Jul -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0034%
2013/Oct -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0054%
2014/Jan -  Genoptix  -  IS  -  Sprycel  - 70 - 0.0093%
2014/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.013%
2014/Apr -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0048%
2014/Jul -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2014/Nov -  Genoptix  -  IS  -  Sprycel  - 100 - 0.047%
2014/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2015/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0.0228%
2016/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2016/Dec -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Mar -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Jun -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Sep -  Genoptix  -  IS  -  Sprycel  - 100 - 0%
2017/Dec - Genoptix  -  IS  -  Sprycel  -  100 - 0%
 

 


#16 ADCARSON

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Posted 26 April 2011 - 10:04 PM

Hi Shelia,   I agree with what everyone is saying.  There is financial assistance out there either thru the Leukemia Society or the drug manufacturer.  I went back to work 3 weeks after diagnosis (a week of that time was in the hospital)  I have days when I am more tired and problems with indigestion and heartburn but seem to get through the day.... it helps to get your mind in a better place so it is a good thing to be able to get back to work and a normal life as possible.   Good luck to both of you and keep us updated.



#17 cousineg

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Posted 26 April 2011 - 11:12 PM

Hi Shiela,

I'm sorry for your husband who is suffering from CML. Nevertheless, take time to relax.There are several ways:
by massage therapy

by art therapy        (see the CMLer's portofolio)

by music  therapy  (see The march toward healing   Too much angels in heaven!  The battle for healing )

etc.

Welcome to our group,

                      Gilles






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