Stopping Xgeva after three months, also need Medicaid/Medicare answers

Hi all,

Just had a good set of scans with results showing my bone and liver tumors are GROSSLY STABLE. That is how it was three months ago as well. What are they doing in there? Lurking? dormant? Wondering where their meal of estrogen went?

I took Xgeva three months and found it caused so much pain (with the Femara?) at least two weeks out of four that I'm going back to taking Zometa every 12 weeks to have 2 horrid weeks out of twelve. Man, the pain was a 7+ and I was depressed as well. Ouchy! every joint hurt. sheesh. And I thought my reaction to Zometa was bad!

Anyway it is 29 months as of June 1 that I was deemed dissabled and I will automatically be on Medicare June 1. I am on Medicaid at the moment having done a total asset spend down to the point of poverty and food stamps. When I called Medicare they told me to go to the Social Security website and fill out a form for possible low income help. I did. They said I was eligible. Meanwhile Medicaid told me to fill out a form for help with Medicare and maybe to become my secondary pay-er. That's what I'm told.

How does that work? Is anyone in my position? Did you also buy a supplemental policy? I still have a spendown (if you are in my position you'll know what that is). One organization doesn't talk to the other and I don't know who to speak to to give me the big picture so I can do what is best for me. Any clues???

Thanks all and G-d bless you!

Laurie

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I would do what both agencies told you. I think it will all come out in the wash once you are on medicare and it will be all to your advantage.
From what I know, if you are low income then medicaid will pay the amount you would otherwise have to pay medicare (they take it out of your disability checks when you become eligible for medicare). Anyway medicaid pays that part for you for part B, don't know about part D, and then medicaid becomes your secondary insurance. Medicare is always first, and medicaid likes it when you become eligible for medicare because it saves the state a whole lot of money, once you are no longer using strictly medicaid for your health costs.

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LaurieW,
Wonderful to read that your mets are "grossly stable" and appreciate how know you wonder where "it's" lurking. Seems to be our lot.
Thanks for sharing the news on Xgeva. I like many am on zometa and have been curious about any news about Xgeva. The results initially didn't seem overly better than zometa so it is interesting to hear how your body reacted with it. I have been having monthly infusions and am hoping to drop to bi-monthly to reduce "effects".

Sorry can't be of any use regarding the medicare/medicaid. Hope it all gets sorted soon for you.
Jo

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Thanks gals. One, re Xgeva: two weeks of pain and depression. I am now on it once every 12 weeks. Jo, how long have you been on once a month? I never was, always once every six weeks because the trial I was on had me come in every three weeks. Now that they know I'm in the placebo group I come in every six weeks and get Zometa, after a year on it, every 12 weeks. It is rough on me. Lots of pain and days of depression. We shall see if the anti depressant mitigates that at all.

As for the Medicaid we shall see. I have a large spend down and am hoping it goes down a bit when I switch to Medicare. Seems like the single person monthly income allowance for Medicaid was 750 dollars (really????) and for Medicare 900 per month. No one person seems to understand the system! grrrrrrrrrrrr.

Laurie

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I am on Medicaid in CT. I think Fragilistic had it about right as to how it works. I can understand your frustration with all the agencies not communicating - it makes it SO hard to navigate it all.
Have you spoken with the social worker at your hospital? I found that they know the gov't systems fairly well, Also, you may try to speak with someone at Patient Advocate.org... they seem to know the ins and outs pretty well too.
Best to follow the various instructions from your various case workers... it may be a tangled mess for a while, but once you are settled in to all the programs, things should smooth out some.
Yes, income limits are ridiculous. I am held to under $700/mo income for CT Medicaid. I know Social Security has the Supplemental Income program, and their income limit is around the same. Your SSI benefits will be reduced by the amount of income you have also. Any funds you receive from charity will be called income also, but gov't assistance (such as food stamps, which I am also now on) are not counted.
I did not do a spend-down, but rather waited until I was below the asset cut-off of $1,600 total assets before applying... just seemed easier for me to do it that way.
I hope the social worker or Patient Advocate can be helpful for you.
I'm very happy to hear your mets are stable... they may be "sleeping" and can stay that way for long periods of time (mine were stable for over 5 years). I wish you decades of "stable"!
:)

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I had a bad time with Zometa. I wound up with sciatica. Crappy way to start treatment. They switched me to Aredia and I'm having no side effects. My onc has mentioned Xgeva but I'm concerned after my experience with Zometa. My pain doc has suggested Cymbalta for treatment of pain and depression. I've had good luck with Effexor so hate to change.

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I'm really glad to hear that mets can be stable for years. I had no idea. Of course the docs did not tell me this. I think they should be shrinking or something. I expect they would normally be building new blood vessles or growing if they had a chance. The Femara must just be holding it in check. The whole thing definitely makes me nervous.

Meanwhile I've spoken to Medicaid. I think I am going to have to get a supplement in case the Medicaid does not kick in because I have a large spenddown. I've got a call out from an insurance broker for the elderly.This week I had a bad experience at the hospital "school" of dentistry. I've never been in so much pain just doing xrays. What do you guys do about dental expenses? Get insurance? Medicaid covers it but hardly any dentists take it.

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Great news that all is stable, lets hope that the little cancerous cells continue to starve. Medicare and Medicade are tough to wade through. I have medicare and also my husbands insurance, since he has insurance, medicare pays little or nothing even though I pay 119.00 a month out of my social security....talk about irritation. God bless, CurrentRiverGal

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I spoke to a senior assist insurance broker today and it looks like if I get a Medicare PPO advantage plan because I am under 65 and you can't get any other type of supplement in the state of Ohio this will seemingly take care of the hole of 20% that Medicare doesn't pay for and the gap in payment from the Medicaid spendown. You have to practically be a genious or some kind of god that has a huge overview of these programs because the departments don't talk to each other. Hope this works.

Not looking forward to taking Zometa again I must say. It is a bear.

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re Dental, yeah it's a problem. like many other types of doctors (thankfully most cancer centers take Medicaid), so many doctors do not accept it and that can make it VERY hard to get care.
I have not been to the dentist in 3 years now. There is only one in my state who takes Medicaid - it's a 3 hour drive. I did find that Medicaid does not cover the type of treatment I need though, so that's a problem too (only covers 1 preventive treatment a year - ie cleanings. I need root canals and crowns on previously treated teeth, which is excluded - oy!)
Sorry to hear about the dental school causing you pain - I have considered going to a dental school myself. Perhaps you just got a bad student (one can hope?).
Keep in mind that since Health Care Reform, many Medicaid policies are changing in our favor. Unfortunately, the monkeys who work there don't know about this very often, so you get wrong info. Double check what you are told by them. Depending on your state, the spend down part may be different now.
Good luck navigating these rough seas!

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In
teresting about your pain. I have stage 4 prostate cancer and was put on xgeva over 3 months ago. My next shot is tomorrow. I have been all over the internet and can only find basic info on how it works which I now think the drug makers are not telling all. I play ggolf and have for 2 years along with other sports. A month ago Icame home from 18 holes and felt some pain in my right hip. The next day it was terrible and didn't stop for a week. I started to go to mt chiropracter and went every other day. No change. Its been 3 weeks now and the pain is finally subsiding, but muscles in my back still hurt in the morning for hours. My cancer is in remission and my psa is .5 Doctors said they couldn't find the cancer cells if they had to because they have shrunk so much. Yet I still get the shot of xgeva. As far as I can find the xgeva stops the osteoclast action from happening to the bones. That means the cells that are naturally ready to be discarded are being stopped by a protien interferring with the process called RANKL. So, the cells that should be eleminated stay on the bone and give the illusion that the bone is building and the mass isn't decreasing. I am looking into this further with my doctors and am going to sak to not have the shot for a month to see what changes. I am confused now and feel that the $3000.00 injection which costs the doctors $1650.00 may have a factor. Bottom line.....why do I need xgeva if my cancer isn't progressing and is microscopic to find. My Lupron keeps that in check for now and may for many years. I saw your site and when you said you were in pain I had to reply.
Any info anyone else has is welcome, thanks all

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Hi, I could not comment on insurances, as I live in another country. I want to ask about stable bone mets. How they look on bone scan - they are the same as "the first time seen" , or they dissaper - you could not see them on bone scan? I am wondering on that and will be very glad to cler it for me, if possible of course.
Hugs
G

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the Zometa infusion went well and caused so much less side effects of pain than the xgeva did. I did have a few days of depression but it passed thanks to the elavil I think. Wish it hadn't put all this weight on my hips though!!
As for Medicare, etc. I ended up buying my own dental policy from AARP. I just couldn't stand trying to work with the Medicaid system which in a word sucks, at least here in Ohio. I guess in Wisconsin where I am visitinng now they call it "Family Care." I have decided to do regular part A and part B of Medicare, not the advantage plan and continue to apply for financial aid at OSU if Medicaid won't pick up the bill due to my spendown not being met. Social Security gave me a great deal on Part D, the drug part due to my low income and the co pays are minimal. For some reason Medicare does not cover the class of drugs called benzodiasaprene, spelling? benzos commonly called. Why? I have no idea so I still need to met my friggen Medicaid spendown each month to get them to pay for that script. grrrrrrrrrrrrr Medicaid. A nice Medicaid worker agreed: "Talking to Medicaid and Medicare can make you cry." yep.

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Dear G,
My onc said that a bone scan shows a gross reading, you can still have sights "light up" that were broken years ago so it does not show if the mets have changed, dissapeared etc. they use the CAT scan for the for me and and MRI for the surgeon. All looks stable so far, almost two years with some shrikage. Keep shrinking I say!
L

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Thank you so much for answering me. My spin mets looks like the same, as 6 months before that. The three spots I had in the spin are "lightening" almost the same way. Good news are that there are not other spots, of course, but I was wondering if they should dissapear if healing....

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That sounds good G and no new spots, excellent, seems like fromwhat my onc tells me they never dissapear on a bone scan as the scars activity and old activity all light up.
L

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HI All....just wanted to add my experience with Xgeva....I have had no significant side effects....I take a small dose of ativan before my shot, so I don't experience any nausea and last month I had a bit of flu like symptoms but so far, nothing this month. On Zometa, I was completely incapacitated for 6 days with excruciating pain. Just didn't want people considering xgeva to be afraid that everyone gets horrible side effects. Also, for those needing dental cleaning.....check GROUPON.COM if you are near any of the cities where they have specials. They occasionally offer deep discounts for dental services.....but you have to check everyday or be put on their mailing list to catch a dental special. I have never seen a special for more involved dental services though.

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Congratulations on now receiving Medicare Part A, B, and D.
Good advice Flymom about the dental groupon. I got 2/3's off of cleaning and x-rays for a member of the family who hasn't been to the dentist is a long while. If fillings are needed, that is another thing, but the dentists usually have a plan where you can pay that off monthly.
Regarding xgeva, I have had a good run with it, and before I had some pain on zometa, but the worst of all problems I got on aridia, which I took originally and they thought wouldn't cause problems, but aching bones for more than a week on that. Then they cut the dose in 1/2 and that helped a lot. But, now I'm on the full dose of xgeva.. I asked not to have it monthly because of the build up but the Doc said she'd rather monthly so we'll see. Anyway side effects from the shots are minimal. As regards to what it does for a person is it hardens the bones to make them less breakable, it supposedly doesn't really fix any damage done.....I'm in the dark so much sometimes a little light blinds me......who knows?

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Not sure what an aridia is...
L

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Aredia is really pamidronate disodium which is one of the older bone strengtheners. It is given over about a 2 hour chemo drip and is not expensive at all. But, the newer ones are considered better, I think. I especially like the xgeva because it is given by an injection.

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I had a bad reaction to Zometa, pain everywhere. I switched to Aredia and it doesn't bother me. It is a 1 1/2 hr infusion but I feel that's worth it. My onc and I talked about Xgeva and I decided it wasn't worh the risk.

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