My Husband, My Life, My Love, My Family, My Cancer
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Welcome Phet to the thread.
Mara i was so sad to read about your appt. I'm so happy that your scan was stable at least you had that.
My friend wrote a book, "Just Fine" about 8 years ago but it's about mental illness. Similar societal responses. How are you? How's your bipolar? How's your cancer? So yeah we're all just fine thanks for asking good night.
The school my son works at has a enormous amount of covid cases and now he's sick. Got a test didn't get results back but he has fever, aches, weakness, cough, sore throat etc.
Waving hello to all.
Tanya
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I want to throw up. I have a call into a insurance rep. She told me that with the affordable healthcare act and my cancer diagnosis there are 2 insurance companies I qualify for. Next I have to see if my MO/cancer clinic is in network with either one. Then, will my meds be covered. I tried to look online myself after the phone call. Looks like "specialty meds", Ibrance?, would be 50% covered. !!!!!! So, $10,000 a month??!! I pay $35 now. I am going to call her back tomorrow and ask more questions. OMG what am I going to do.
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Candy,
Your new cancer center should have people to help you with the meds issue. Pfizer actually has a couple of programs to help, but the larger centers will have someone actually assigned to help process an app to Pfizer very quickly. The programs are income based so you should qualify. Jaycee is the most knowledgeable one on these boards about this, but you can look on the Pfizer website and see that if you qualify for their program based on income, they will give you the drugs for free.
So take a deep breath, and tomorrow, call or email your MO's office and ask them who they have at your center who can help you with this type of issue. I'm sure they will get on it quickly.
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Thanks BevJen. I know Jaycee is our expert about Ibrance assistance. But she has posted before that some of the assistance programs are out of money. That you can look for assistance and the programs have monies at the first of the year and run out soon helping others. I will definitely ask my cancer center. But, also, my deductible, maximum out of pocket, and co pays are going to be higher too. Looks like more % for scans too. Maybe I am reading it wrong. Or I was just lucky with the company group plan I was on. And now not so lucky. This will be for 6 months--- July-Dec. But then Medicare and supplement. Will Medicare be better, cover more???? Health care sucks in the U.S.
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Oh, Candy, I'm so sorry you're going through this. I agree that there HAS to be something out there for you. I hope your Cancer Cancer can help.
Cancer sucks!
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Candy - I found this post while I was looking through the BC site (I just looked on the Ibrance website and they do still have a copay card. I think that the Affordable Health Care plans would qualify for this):
Oct 7, 2017 08:19AM HLB wrote:
Here is a tip you probably already know but some new people might not. Go to the website of whatever med you are taking and see if they have a copay card. If you have non govt insurance you usually no more than $25 regardless of income for brand name drugs. I have used it so far for xgeva-$25. Ibrance-$10. There's one for kisqali that I think is $0. My ins has pretty high copays on specialty drugs and neither the onc or the nurse coordinator told me about these. A friend found the first one for me. There are no income requirements. Unfortunately they don't work for govt ins, but most have other programs for that and might have income requirements. I think there are a lot of different assistance programs out there but you have to ask.
I thought this would be a good thread for people to add their cost saving tips but if that was not the intent of the post, sorry and feel free to delete or move. Thanks!
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Candy,
The Pfizer program that I'm thinking about (it's through Pfizer) gives you your meds -- no money out of pocket. Jaycee has often talked about the private foundations that do run out of money as the year goes on -- not Pfizer.) And even when you go onto Medicare and get a Part D program (for your drugs) you can continue on the Pfizer program if you meet their income requirements. Your meds will then come directly from Pfizer.
Medicare pays 80% of what is known as the usual and customary fee for any given service. If you get a Medicare supplement plan, that picks up the other 20% of anything approved by Medicare (if it's not approved by Medicare, then neither will pay.). I have been on Medicare for almost 4 years. Between Medicare and my supplement, I've only had to pay for one thing that Medicare didn't cover -- a Pap test, which they only cover every 2 years for most people. The drug plans are a little trickier -- If I was still on Ibrance, this year, that drug, with my co pays, would have cost me about 14k. But faslodex, because it's administered in a hospital, is completely covered by my Medicare Part B.
The other kicker is that you'll have to make sure that your docs take Medicare and that they don't add on fees to that. I'm going to guess that Wash U (isn't that where you go?)will probably take Medicare which means the docs housed there will do so, too. You will have to check your local people, though, and make sure you DO check that.
The info above applies to Medicare; not to what you will have to go on for the six months leading up to that. You may also want to alert your docs about the issue with insurance, bc perhaps they can base when you have scans to get you in before you go off one plan, and then have your next set of plans when you go onto Medicare. Also, I'm on traditional Medicare, not a Medicare Advantage plan. You will have to research both to see what works for you. Figure out your fill in insurance stuff first, and figure out your Ibrance. Then you have some time to research Medicare and supplement plans.
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Candy - I should have put the link to the Ibrance co pay card on the last post but here it is: https://www.ibrance.com/registration?src_code=IBRW...
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And Cowgal, I think, is right -- even if you're in an exchange plan, it's still considered a commercial insurance plan. You just can't use those cards if you are on a government plan -- Medicaid or Medicare.
Again, you should be able to discuss this with either the pharmacist that works with your breast cancer center (who can explain and direct you to the right person) and/or with the financial person(s) at your center.
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So DH and I decided to get drunk on margaritas tonight and listen to 90’s music. We’re having tons of fun and I have to say, I don’t feel like I have cancer at all. This is awesome. If you haven’t had fun in a while, have some fun! Whoohoo 😆
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Booboo - I am so sorry you are having to deal with your situation.
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Thank you ladies for all the tips. I just freaked out yesterday. I thought the COBRA insurance (extension of my employer's plan) would get me to Medicare. Then, BAM, your COBRA is expiring in June and Medicare not till Jan. The insurance rep I called is someone I have worked with before-- for life insurance policies of family members. So I reached out to her. She is going to do some homework on what plans may fit my circumstances. My homework was to call my cancer center and see if they took ____ plan. I will call the insurance rep back on Monday (if I don't hear from her today) and discuss some more. She commented we have time to figure this out. I will also look into the Ibrance assistance.
I just do not understand all this insurance stuff. There are hundreds of insurance companies out there, but I only qualify for 2 companies due to the affordable care stuff and pre existing condition stuff. ??? And the deductibles can be outrageous!!!! So I am looking at lower deductible and lower out of pocket costs. But, even those are much higher than my company plan. So I am going to be paying out much more for coverage than what I have been. And I have a fixed income--- SSD.
Mae- I do not drink, but it is tempting with everything. Get stinking drunk and forget all this cancer crap.
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Cowgal,
Thank you. I’m trying to hang in there and take each day as it comes. I appreciate your words of kindness.
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Booboo, I’m glad you’ll have some time with Dumb Husband gone and support coming from your sisters and friend. You have your own stuff going on and don’t need any more to deal with. I know they say alcoholism is a disease or an addiction but maybe rehab can accomplish something with him. Or as you said, maybe not. I hope the new treatment is tolerable and that you feel good enough to have some fun with your sisters and BFF. 🌺
Candy, I hope some of the tips you got for insurance work out. Our drugs and scans are so expensive it’s unbelievable. But insurance is expensive too. I wish I could help you.
Phet, Welcome to the thread.
Mae, Sounds like a fun night! Good advice to cut loose sometimes.
Hope everyone is doing ok.
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Candy, I have an unfair advantage. I've been dealing with my MS dx since I was 40. I am now 71. Lots of time to learn how medical systems work. Lots of time to get used to being screwed by it. Your medical insurance coverage is the bigger problem. Getting drugs, especially Ibrance, should be easy. Pfizer has loosened up on giving it away. They are making a bundle from their vaccine. Just call them. If it were me, I would not get any scans for the six months in between Cobra and Medicare. They are the expensive item in your routine. I have gone that long many times. MO wants three months and I always stretch it out to at least four or five. Small jump to six. Now, most people on this thread will be horrified that I am telling you this. What if the cancer grows in that six months? Yup. You're not me. I'm just saying, that's what I would do.
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jaycee, I'm not horrified at all. I'm much newer into this Stage IV journey than you and many others are. I have scans every three months for now. Would I stretch it out if my insurance didn't pay? You bet! Would I stop Ibrance if my insurance didn't cover it? Probably, yes. I don't have a death wish, but I'm not going to spend every last penny to give myself a few more years.
This disease sucks and the fact that you've dealt with MS for so many years sucks, too. I like your attitude. I also love your profile picture - you remind me of a friend I had about 30+ years ago. She died of breast cancer, but she was a joy to be around. She introduced me to "2-dollar Tuesday" at the movie theaters. She took me to some weird stuff, but it was always an adventure. Did you ever see "Little Shop of Horrors" with Rich Moranis? (circa 1986).
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Jaycee, Sunshine, Candy - I, too, am new to Stage IV (and cancer in general, since I was diagnosed de novo). My MO has suggested stretching out scans to 6 mos, partly because my TMs appear to be sensitive, partly to limit radiation exposure "this early in my treatment". I'm good with that as long as my next scan (2/19) confirms all is well. I'd also like him to test TMs monthly, instead of bimonthly, I think. If I'm improving or stable, and there's another way to monitor, it seems reasonable. My point, that I may not be making very well, is that the six month period may not be such a stretch, especially if there could be another way to monitor your status.
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Sunshine, I am not really a movie person. But I just posted in the steam room that the whole process of taking one treatment after another reminds me of Lucy and Ethel in the out of control conveyor belt episode.
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I called my insurance lady today. She said she has been busy with appts and have not looked into things for me. She said to call her back next Friday. So... I will sit on this till then. Hard for me to do as I am a person that likes to have a plan in place. But I have insurance until June. And it is so confusing to try to tackle on my own without her help.
As far as stretching out scans, I really do not want to do that if I can help it. I do every 3 months now and would agree to every 4 months, but 6 feels I am pushing it too far. Maybe I could set up a payment plan with the facility for the amount I owe when doing a scan. Insurance would pay some, just a bigger copay for me.
The Ibrance cost is something else entirely. I will talk to the insurance lady next week and hopefully pick a insurance plan. Then see what that plans copay would be for Ibrance. Then approach the cancer center for copay assistance. Yet again, I would have Ibrance until June. I do not need the assistance now.
On another note, I am having more GI issues and I am going to talk to my PCP at Zoom appt Monday about a referral to a GI doc. I think a scope is in my future.
When it rains it pours.
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Candy, I’m sorry you’re having insurance issues. The stress that causes is immeasurable. As you know, I have mets to my stomach. An endoscopy is a smart idea if you are having issues. Hugs.
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Hello Ladies ~ Happy Saturday! Don’t have anything planned. I wish I could sleep all day. I feel peaceful and happy when I’m wrapped up in those covers. Then when I open my eyes I have to get out of bed, which takes time to open the holes in my head known as eyes and have them not be dry and hurt. Then I have to have the initial floor walk. That hurts too until I get going. Once I work the kinks out. I mosey down for coffee yes coffee. My sister bought us a new Keurig streamline for Christmas. It makes a good cup. Then I sit with my blanket and wake up to realize what ? I have nothing to do and I still have cancer. Yippee I’d rather go right back to bed. It’s a shame we can’t sleep whenever we wanted to. It would help me at times. Hope everyone is doing ok. I’m stilL sore on my hip/side of my left leg. So I’m not happy about that. Bone bruises take awhile to heal. Hugs to al
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Mel- I usually am asking for advise on here. But now I will give some advise to you. Is there anything you could volunteer at? I have mentioned on here that I was volunteering before Covid, a couple of different places. And I hope to go back to it someday post Covid. I know Covid has put a stop to a lot for us. But do you have interests you could expand? You have mentioned you cannot work anymore. I get that. Me too. Just wondering if you can find something you enjoy, enjoyed in your pre-cancer life, that you could look forward to now.
I just am wanting to give you a glimmer of something to look forward to.
But I do understand. I got up early this morning to do some Dollar store shopping I needed and I wanted to miss the crowds. After I got home, still early in the day, I put in a load of laundry. Not much else for the rest of the day. Makes for a long day when getting up early. I look at next weeks plans and not much there either. Same old, same old.
Wish we lived closer and I could come over and spend time with you in Mel's Living Room.
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I also found out that a friend of my family since I was a child is in hospice now after a devastating battle with esophageal cancer. He went through a lot and had it over a couple of years, same time his wife then got breast cancer. They were living with their two grandchildren, both with autism, that is a hell of a lot to face all at once. I just feel a sense of great sadness for them and empathy for what he must have gone through as well. Glad he will no longer be suffering.
I haven't done much, going shopping with older DB and doing my usual, laundry, eating etc. Going shopping with DB this afternoon as well, surveys etc. Been tired this infusion period so far but overall, feeling well. My skin on my fingertips has been a pain with stupid finger cracks. I badaged up my thumb and index finger for a couple of days, they feel better. Using rubber gloves for mixing up my wash soda, I discovered just how caustic it is by how painful it felt when it hit the thumb and forefinger. Just a fact of life in winter with dry, cold weather. Oh well, could be worse.
I went ahead and bought a scale from Amazon, as I mentioned before, I am working to control my weight better by measuring food and being realistic about exercise I am doing which was not athlete level like the amount of food I ate. My MO was complaining about my iron being 1 pt under the low normal. I have decided I don't have the money to keep buying stuff I won't like to eat and definitely no iron supplement. Unless I start getting lightheaded again or unable to perform my walking, I eat plenty of iron rich foods.
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Booboo,hope you are feeling better with some breating space at home, thinking of you.
Candy, I cannot offer help on the insurance front but hope that one of the solutions offered by others here will help. It would be heartless to expect someone on disability to be able to pay for drugs like that. Best of luck with that.
Mae, glad you got to forget the cancer for a night, that is awesome
Hello to all others I know I have missed.
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Tanya, Did your son get the results of his Covid test? I hope that he is feeling better. It must be busy down there right now as everything is getting readied for the Super Bowl. We miss Tom Brady up here in New England, but I am glad that your family can enjoy his talents there in Tampa. How is your gardening coming along?
Mel, I think everyone shares your feeling about having nothing to do. Every day is Groundhog Day. My dh and I never leave the house except for doctor’s appointments or walks around the neighborhood. I haven’t set foot in a store since last March. Wow, that is almost an entire year. I have done lots of reading, sewing, knitting, gardening (until the cold weather hit), and WAY too much tv watching. I miss my children and grandchildren as well as my friends. You sure hit the snow jackpot during the last storm. We only got ten inches, but that was plenty for me. I hope you don’t get too much from the next two storms that are coming.
Mara, I love reading about everything you do. I am still amazed at all your walking. I was happy to read that your scans were good. Ignore the nasty comments you were subjected to at the cancer center. Some people just don’t think before they talk and others just don’t know how to mind their own business.
Booboo, I am sorry that your husband is putting you through all that he is. I am glad your sisters and friend will be there to help you through this difficult time. Have you considered a support group for family members of alcoholics?
Mae, that last picture you posted made my mouth water. It is good to see you enjoying cooking and eating again.
Candy, My cancer center automatically searches for financial help when I start on medications with high copays (Ibrance, Afinitor, Verzenio). If the foundations are out of money, the pharmaceutical companies will usually step in. I know that Pfizer offers help for Ibrance. You will want to continue assistance even after you switch to Medicare.
I will have my first dose of COVID vaccine a week from today - YAY! It was very easy to sign up for an appointment here in NH.
Well, Adriamycin failed after 11months. I was disappointed since I feel so much better than I did a year ago. My onc was amazed that I did so well for so long.My MO sent me to Dana Farber to see if they had any clinical trials for me, but I don’t qualify for any. So today I took my first dose of Verzenio. If this fails, I will go back to chemo, but both my MO and the onc at DF agree that chemo probably won’t work longer than six months. I guess I will just have to prove them wrong. I love living and will continue to enjoy myself as long as I can. There is no sense focusing on the negative when I have so many good things in my life. I do wish I could travel again. I would love to be sitting on a beach under a palm tree right now. (Doesn’t Hawaii sound wonderful, Tanya?) This COVID thing is getting old!!!
I hope you all have a good weekend
Hugs and prayers from, Lynne
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50'sgirl- I hate to hear you have had progression again. Praying the Verzenio works for you for a long time. I am glad you got the chance to get the Covid vaccine. Will you have to stop Verzenio for the vaccine?
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I’m still a bit tired from staying up late and getting annoyed easily, gonna lay low this weekend. DH is cranky today and HG (houseguest) is like a toddler, picking up random items and asking “what’s this?”, “where’d you get that?”
Will catch up later but hello to all
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50'sgirl- I don't think I word things like I want. I hope I didn't offend you by my last post. I just fear progression. Will progression be a 1cm change in the liver mets and that is "progression" and on to another treatment. Or will it be an explosion of mets. Will my liver enzymes go crazy (always been in normal range, even with the 8cm original tumor). Will I start to feel sick. Will I have ascites. Will it not be the liver, but maybe move to the brain or lungs. I know I should just "forget" the cancer while it is quiet. Focus on living. Especially if we can get past Covid. But the fear of what my future will look like is always with me. I think my family/friends think I should forget it since I look good and come back from scan appts saying "stable mable". I don't know.
Again I am sorry about your progression and pray for you. You sound so strong. God bless you.
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Thank you 50's girl. I still enjoy walking as well. Weather was nice, did not get a lot of outdoor walking today but did get a big shop and no cart and lugged two heavy bags around the store. I find I can put one large bag over my shoulder and another on my left arm without much trouble. My brother was worried I could not do it, but I had it all picked up and on my way up the stairs. I do not overstock groceries if I am walking, only when older DB takes me shopping. We went for a drive and I ate drivethru as today is ostensibly my cheat day. Whatever day they say they are coming becomes my diet cheat day while I behave the other 6 days of the week, maybe 5 this week.
I am happy for those of you who have received vaccines. I probably will be looking at September the way drug distribution is going. Pfizer is short, Moderna is short and I am not sure Health Canada has approved Astra Zeneca. Not sure why we did not start manufacturing our own as well. Oh well, me complaining won't make it happen sooner and I just can't be bothered worrying about when I will get it. I mask up in surgical masks with a pretty one over top so my face is protected and don't take my time in stores, in and out as fast as possible. Busy today with people buying snacks. Hope there are not a lot of parties going on. I still would not be surprised if we start getting a covid shot yearly alongside the flu shot. The most interesting things is that masking does help in cold and flu season as the flu numbers are almost nothing compared to Covid numbers. I plan to wear masks permanently. Don't care what people think.
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Oh and no Covid vaccine for me. CDC doesn’t recommend it for those with a reaction to the ingredients and one of the ingredients it’s was gave me anaphylaxis during chemo and landed me in the ER. Just gonna stay careful.
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