6 replies to this topic

[redonkalous]

Hi guys.  Long time lurker here and decided to join during the anniversary of my CML and just now ready to ask some questions.  Sorry in advance if these questions have been asked and answered before, but some questions abc situations I feel might be unique and I apologize if I use some terms wrong as til this day I'm learning new things of about this cancer.  I was diagnosed 4/7/2011 with a 671.400 WBC and 275 Platelets.  I was admitted to UCSD Medical Center (this place was amazing) and put on Gleevec. I was only working at retail at the time and did not have any kind of medical insurance.  Thankfully UCSD MC donated a months worth of Gleevec and put me on Novartis Patient Assistance for a year.  I had to stop getting my blood drawn and from seeing the oncologist at UCSD due to not having insurance and unable to afford treatment.  I was not eligible for Medi-cal since they say my condition is not covered so I turned to my county for assistance.

Thankfully I started a program called MISP and started seeing oncologists at the Riverside County Regional Medical Center Infusion Clinic on 7/25/2011.  During the time I stopped seeing anyone from UCSDMC to finally seeing someone at RCRMC, I was still taking 800mg of Gleevec daily.  I was told to stop Gleevec as my WBC was now 6.7 and PLT 40.  A couple months off Gleevec my WBC went up to 40.00 and PLT and during the following months, I've stopped then restarted and change doses for Gleevec.  I grew resistance with Imatinib and started recently 5/1/2012 with Nilotinib, Tasigna 400mg every 12 hours.  Side effects wise I did have brief  headaches with Tasigna like I did Gleevec but it went away in a week. It was really bad though and I got through it but I also had rashes all over my body but that went away too. The rashes did increase my acne and I'm currently working on clearing my face.  5/15 I had to lower my dosage to 200mg because of elevated liver toxicity I believe it was 2.6, WBC 6.3 PLT 94.  During my last visit 6/5 it was WBC 7.9 PLT 54 and BCR/ABL 5.5 liver tox 1.2.  They told me to stop Tasigna until my PLT went higher since I was low.

Up until April of this year they had me on Disability but now I am off that and well enough to work again and I am looking for work now but I did apply for Unemployment as I search for work.  My question is for anyone with the same situation as me, having little to no income, how did you get through or how do you get through it?  I'm 31 years old and my wife is 27 who got laid off her dental office and is now on unemployment and both of us have no kind of insurance.  The Novartis patient assistant is only good for til next year and I'm worried I have to switch meds again, maybe to Sprycel but I don't know if they cover that? I'm just trying my best now to find something with good health insurance benefits, it's just hard being indigent.  But I'm prayerful I'll find something and continue to fight this thing.

My wife wanted to finish her school and recently joined the Navy and will leave to bootcamp this Sept 10.  Our five year anniversary is on Sept 1.  I believe the military will help but in the meantime I'm trying my best to help us.  Any military families in here?  My older sis and older bro are in the military as well and I tried joining but was disqualified because of high protein in my urine, way before I found out I had CML, in 2007 when we got married.  Sorry for the long read but if anyone could give hints and share similar experiences, that would be helpful.  Thank you.

[Aussiegirl]

So sorry your dealing with worrying about treatment while trying to fight the cancer. It would seem that the military is you best bet to insure you receive regular treatment. .I was without insurance as well when my blood disorder went into full blown CML. I had to use up what little savings I had left after being laid off for over a year. I was forced to go on disability and Medicaid. Next month I am finally eligible for Medicare that also is somewhat limited. Even if I felt like I could go back to work I don't think I could make the copays.Its a shame that in a country like ours so many are without the healthcare and meds they need. I worked all my life only to end up like this is hard to deal with sometimes. Good luck with your treatment atleast the military has health care.

[Susan61]

HI:  Glad your not just a lurker anymore, and ask any questions you want. Sounds like you have had a rough go of it with switching TKI's and finances.  I know what its like, but if you still have no insurance then apply to the Patient Assistance Program through the Leukemia & Lymphoma Society.  Contact the drug companies, and fill out their questionaire to see if you still qualify.  With your wife going into the military, she should be able to get some kind of insurance for both of you.   I am not sure, as I have never had to deal with the military for anything like that.

     I have insurance through my husbands job, and we are still struggling to pay all the co-pays etc. that come up with our medical care.  This economy is killing everyone who is trying to make things work out, so your not alone.

    Glad you got on here, because there is always somebody who can give you some type of information to help you out.

    You can talk to us about anything, and we are always ready to help if we can.

Susan

[redonkalous]

Thanks guys and sorry to hear about the financial situations.  Thanks for the L & L S program info.  If all else fail I will give that a go.  When I was working, the health insurance was killing my pay check so I had to discontinue it.  A month after that is when I was diagnosed and I kicked myself for doing that, ah well, who knew.  I feel good now and  ready to get back to the work force.  I promised myself when I got healthly enough and can get back to work I will but now here I am searching.   We're actually planning to have a very small ceremony to renew our vows before my wife goes, on the first of Sept. and that's my next personal promise.  Just got to stay optimistic.  Step by step we'll get into a better situation.  I know better days are to come for all of us here.  Thanks guys.

[jrsboo]

Dear Redonkalous,

As a military spouse you should have access to all kinds of medical care at the closest base.  What state are you in?  You should go to this website for a start of the benefits of being a military spouse.  http://www.military....ry-spouses.html

I am the Family Readiness Group leader of my husband's army unit and there is a ton of benefits out there.  But you have to go and look for them. 

The military will cover you for all your medical needs. 

Please let me know if I can help.

Caroline

[redonkalous]

Thanks for the link.  We're in Southern California right now.  Her bootcamp is at Chicago then schooling at Florida, but during all this time we decided that we can save more money is if I stay here instead of going to Florida only for a few months.  After her school and when she finds out where she'll be stationed at is when we will move.  Also because of my condition and her job there's three places she can most likely be stationed at, San Diego, Virginia and Hawaii.  She leaves for bootcamp in Sept.  I'm pretty excited, it's a step forward, but I am aware how hard military life can be on top of this cancer. But at least now both of us will have coverage of some sort.  I will browse and take notes from that link and just prepare ourselves even more.  From informative links like that and encouraging words, I just wanted to say I appreciate all of that.  Thanks again guys.  Hopefully I find work at the time being.

[jrsboo]

Dear Redonkalous,

Military life is what you make of it.  If you don't get sucked up into the "drama" you will do fine.  If you life on base, it is a microcosm of the world in general.  Just smile and be friendly, help where you can with unit activities and don't engage in gossip.

As for the benefits, your wife needs to sign you up as soon as she can for all the benefits, you have to be proactive in getting them.  You will need to take your marriage certificate, your birth certificate, your passport and any other identification you have to get your "dependent" card, with that card you have access to a whole new world of benefits.  But without it, nothing.

San Diego is probably closest to you now and should be huge!  Getting your card may take a couple of hours, and more than one trip.  Be patient.  It is worth it.

Let me know if I can help,

Caroline