Emotions (feelings) and costs

[snappy]

I am still confused where to post in here. I picked the General because my questions could be any cancer. My ones specific to my husband's lung cancer I will post in NSCLC section.

I was just doing some reading and saw quotes of the costs of some of the meds used for chemo. Medicare was mentioned. I think Ned had responded to someone. My husband is on Medicare. Also has one of those (grrrrr) Plan D drug plans. Do the meds used for chemo get charged to the actual insurance of medicare and not the drug plan? I was going to post in that thread and ask but thought I shouldn't because that was not the topic.

This is probably wide open question. In general do you end up buying a lot of drugs from the pharmacy during treatment. Money is really not the issue right now. Not that we have a lot, but that I don't care. I suspect you understand what I am saying. I care about his life more. It wouldn't be easy and thought I may as well ask.

We started out doing pretty good with our frame of mind. I think we have slipped some but working on it. Also, things got suddenly changed Friday. I feel we are at a standstill until the next test Monday. I told myself to stay out of here but I came over and started reading. How do you shut your mind off to this for a while.

I had myself under control in the beginning. I get a handle on it again and now only lasts couple hours. Unfortunately I was reading the grieving section and about people that didn't make it. I guess I would like some reassurance that more people get benefit from treatment. I read many of the other stories also.

I am asking if there are any good tips you might suggest at this point in time for beginners. Thanks,

[Kasey]

(((Snappy))).......those parentheses represent HUGS, and you seem to need some right now. My recommendation at this point in time is this......step back ~ both you and your hubby ~ and take many deep breaths. As hard as it is, TRY to keep yourselves together until all your tests are completed and you have all the info from all your doctors. Only THEN is it time to put whatever plan there is into action. I know it seems an eternity before all this occurs ~ it was exactly like that for many of us here.

Next......I wouldn't plan on spending time in the Grieving Forum. Everyone here (you included) know that lives are lost to this disease. But it need not be me or your hubby. You are getting WAY ahead of yourself and all worked up. Once everything is in place you will find things start to move along and you fall into the rhythm.

It is a scary, bumpy ride.....and we all have experienced the feelings you are having right now. I can't answer your $$$$ questions, but there will be many who come along who can. This, being a weekned, you may find responses lacking. It gets slow on weekends because folks are out there living their lives and YOU guys will be too in a short time.

Wish there was more I could say........we hear you, we understand, and are here for you.

Kasey

[snappy]

Thanks Kasey; I hear you and I appreciate the response. I understand about the weekend. That is fine. I am better. I had some good written exchanges with some friends and have my focus back.

I just have to keep my focus there. I really do know how to do it. I have the tools and know how but being human, we all slip.

I am okay. I am intersted if anyone does know about the medicare. No hurry. Thanks again and enjoy the rest of the weekend.

[Welthy]

Hi Snappy,

Yes, it sucks to be dealing with this problem. I was absolutely gob-smacked when my husband was diagnosed out of the blue. I read all the statistics and they weren't pretty. Then I stumbled onto this site and became a student of the profiles. I lurked here for almost a year before posting. Reading survival times for others on this board gave us such renewed hope for him. My husband and I didn't suffer any illusions that he would be cured, but we knew he was treatable and we went for it with gusto.

There will be so many ups and downs that your head will hurt. Try to hang tough for your husband's sake. I know how hard life is for the two of you now and I'm so sorry. You will still find joy in living, but it may not be in the ways you are used to. Things have changed, but you forge ahead and make the most of it.

As far as money goes, with good supplemental insurance, you shouldn't have too much out of pocket for treatments. We never spent more than $1500.00 per year. The only chemo type treatment my husband received that went onto Medicare Part D was Tarceva. We happened to be in a year and in a plan, at that time, that didn't have a "donut hole". I don't know how that is handled now because it seems all Part D plans have the donut hole.

There are several other meds that my husband used to take like Advair, ativan, every sleeping prescription known to man, compazine, Lipitor, etc. With generics, the cost to you is less, but the total cost of generic/name brand drugs zips you into the donut hole pretty fast. I think we hit it within about 5 mos. last year. Our plan continued to pay toward generic but not name brand. I just checked my husband's prescription history for last year and we spent 2364.37 from 1-1-07 to 10-9-07. In 2006, with Tarceva at 60.00 a pop, we only spent 1227.37 -- but someone with more recent Tarceva experience will come and tell you the buzz on that now. Also, as time went on, my husband did require more medications.

I wish you both the best of luck on this new life journey and remember to always have hope. No one can take hope away from you if you hold it deep in your heart.

(Is that really your kitty-cat in your photo?)

Hugs,

Welthy

[snappy]

Hi Welthy; No that is not my kitty. The very first time I joined a forum in 2004 and I learned what an avatar was, I picked that Kitty. Someday I will probably change it but for now he looks good to me.

Thank you for the encouraging words. As I just posted I am doing better. Everything helps though. I was about to shut down and stopped back by here.

I appreciate the medicare part of the reply. I am familiar with the donut hole and have stayed out of it till now. That is why I wanted to ask. I think we will probably end up putting out quite a bit this year. Even that Augumentin has a large total. I had no idea which way the Chemo meds were covered. I know how the plan D works. No one has to post that for me.

Thanks again.

[recce101]

Hi, Mary:

I saw your post, also Kasey's and Welthy's replies, and figured I'd jump in for a moment.

Welthy summed it up pretty well. The chemo drugs administered by IV are included in the oncologist's charges, therefore paid by Medicare and whatever Medicare supplement you may have. Your out-of-pocket costs for the chemo treatments could range from zero up to rather significant, depending on how much of the remaining 20% of Medicare allowable charges the supplement pays.

While I was on chemo, the only drugs I had to buy from my local pharmacy were Ativan (anti-nausea medication which after two Taxol/Carbo/Avastin cycles I decided I didn't need and didn't refill), oral antibiotics (prescribed three separate times during my chemo program for skin breaks), and Neurontin (for neuropathy, which I'm still taking). I'm now off the IV treatments and on oral Tarceva, so Tarceva is added to my list of prescription medications, along with all the ointments, creams, pills, and tapes needed to counter Tarceva's side effects. The Tarceva itself is not handled by my local pharmacy, but by a specialized pharmacy network which delivers via FedEx. It's subject to the same copay criteria as my other prescription medications (my drug plan is under Tricare, not Medicare Part D).

While we're on the subject of $$$$, you should be aware that many, probably most, of the major drug companies have programs to provide their products at reduced cost or even free of charge in certain cases -- people without insurance, or who have reached the lifetime max of their insurance, or cannot afford the copays, etc. Some of our members have used these services, but I don't have any details on exactly how they work. My IMPRESSION is (no facts to back this up) that the eligibility requirements are not nearly as strict as if someone is applying for Medicaid, which a taxpayer-supported government program -- i.e., you don't have to impoverish yourself first. Something for all of us to keep in the back of the mind.

About knowing which forum to post something in, I wouldn't worry about it. You could use "General" for everything and do just fine. I think most of us who write a lot of replies use the "View posts since last visit" feature and will see all the new posts regardless of which forum they're in. If your title is descriptive, you'll get answers, and one of the moderators will move your message if they think another forum would be more appropriate. Nobody around here nitpicks stuff like that.

Aloha,

Ned

[blueeye]

My Mom got assistance for the IV chemos directly from the drug companies before her Medicare part B kicked in. And as far as I know, Part B covers meds given in the clinic setting only. We experienced that with the Neopogen shots. As Ned said, she didn't qualify for medicaid, but did qualify for the drug assistance.

[jaminkw]

Ned and blueeye: Thanks for bringing up the subject of pharmaceutical company drug replacement programs. I've been wanting to post on the subject but thought who am I to advise anyone about cancer and finances when I got caught uninsured. If you are ininsured or find yourself feeling snowed under financially, don't hesitate to talk to someone in finance about these and other programs. And no, the requirements are no way as strict as Medicare. I hate to hear people going into their retirement funds they've worked so hard to try to create as a supplement to Social Security without checking what is available. I almost blew it myself with my stubborn self-reliant "I can pay my way myself or I won't do it (the treatment)" attitude. And don't assume you are middle class so make too much money to qualify. The facility I am in looks at how much you've already paid out of pocket, how much if at all your income has been reduced by the cancer, and whether or not the bills accumulated are already beyond what you or you and your spouse could possibly handle. There is also full help and partial help. My advice to anyone out there struggling financially, swallow your pride and see what help is available. We are sure glad we did.

Judy in Key West

[recce101]

"jaminkw" ...I've been wanting to post on the subject but thought who am I to advise anyone about cancer and finances when I got caught uninsured.

Judy, you are EXACTLY the one to post. I'm glad you did, and I'm probably speaking for lots of others too. Knowing what factors were weighed when evaluating your application is very helpful, and also that it's nothing like the spend-down required to qualify for Medicaid (not to be confused with Medicare). Aloha,

Ned

[blueeye]

I think it also helps to have an advocate. My Mom was too tired from fighting the disease to talk to anyone about assistance but she did worry. I was the one who pestered anyone who would listen and yes, I did apply for medicaid before I knew about the "spend-down" Ned mentioned. (Our social worker was the pits.) And Mom would just say that she had too much in the bank to get anything which was wrong. My Dad paid way too much out of pocket simply because he didn't ask anyone. It never hurts to ask! And I ain't too proud to beg! Especially for that Zoftan ODT that would stop Mom's vomiting mid-wretch. Very costly but wonderful stuff!

[Connie B]

Snappy, I was reading your updated PROFILE and noticed that your husband is having some heart problems. This is why they stopped his chemo and radiation, I'm sure! You do NOT want him to have chemo or radiation if he is having heart issues. Chemo and radiation may cause more problems for your husbands heart problems, so stopping postponing it is the best thing to do.

Right now it appears the doctor's are more concerned with your husbands heart problems. It is so hard to go through all this with ONE health issue, let alone two or more. Let the doc's get his heart issue uncontrol and then see how things go.

Sending you positive vibes and good wishes.

[alexan]

Aqui por irme a la cama. Manana empiezo a las 6 y vos como estas?

[snappy]

Thanks to everyone for the info. We have a supplement to the Medicare. I do know how the drug plan works just didn't know what drugs went to the plan. I am aware that drug companies do have programs available sometimes but always thought it was on a scale. We always miss it. That doesn't mean that we have it either.

You have shed more light on the drugs. I will wait and as things develop keep all these options in mind. I hope, if I can remember. I can think of a couple huge bills I paid during the last years to hospitals. Live & Learn.

Judy, Thank you so very much for your post. That sounds more like us. I started to say that 'we are just a poor middle class'. Actually healthcare has already eaten most of what we have. I won't be on medicare until the end of this year and we pay an astronomical fee for my insurance per month.

I am not backward about my questions. Sounds like the finances didn't come up much. We have always had to look at it and I had been alerted by some friends to question if the drugs are paid by the Plan D or medicare. We have so far kept my husband out of the gap.

I thank everyone for the encouragement also. I finally got my head back on clearer thinking by Saturday. I read your posts and some other friends and talking and finally remembered I am not in control. I got caught up in the events of Friday. Then we had a very pleasant surprise Sunday when our son from Utah showed up. Really good therapy for my husband. It all worked out very nice.

The angiogram today showed no problem. He is okay for treatment. I guess they saw something and said might have been old but had to check it. Safe than sorry,

Thanks again to everyone.

[jaminkw]

Left Key West early for this infusion on today. I needed a grandson in Port St Lucie fix. He takes time out from his friends and activities and just hangs with us in the motor coach. He doesn't ask anything of me but is just happy if I'm there on the sofa next to him appreciating what he's writing or drawing on my computer. What a joy.

Internet while we are traveling stinks so I'm taking advantage of a 5 am window of opportunity here. I want to say that we paid out way too much before we hooked into helplines at MDACC and ORH--particularly on the medications but no sense in crying over spilt milk. It would have been worse,if we didn't have advocates in the system and my husband holding me back and telling me we were going to be broke pretty quick if we kept paying out at the rate I wanted to. It's that old childhood "I can do it myself" thing I fight all the time. We were buying Neupogena at the hospital pharmacy at a rate much cheaper than we could get at home but think we missed a replacement or two because we had bought in quantity and it needed to be scheduled at the hospital not purchased at the pharmacy. We are doing it right this time but it may be the last time we need it. Ned, did you do Neulasta after the Avastin only? We haven't gotten the answer to that yet. Last infusion we also had labs scheduled outside the infusion room and didn't understand why. I think that was an adjustment necessary for the replacement as well. They scheduled them that way again this time. You really need to stay alert and ask questions or bring someone who can. Also, getting the Neupogena in house for replacement also means staying in Orlando three extra days but you do what you have to do.

My quality of life stunk this time but I'm ready to go in this morning and tell the doc I can take it one more time. I just want this last chemo cocktail over with. I just am afraid the headaches will continue with the Avastin only next time but I have to wait and see.

Judy in Key West

[recce101]

"jaminkw" ...Ned, did you do Neulasta after the Avastin only?

Judy:

No, I got the Neulasta injection only after the 6 Taxol/Carbo/Avastin sessions. When I transitioned to Avastin-only I asked about it, and the chemo nurse said no, don't come back in for Neulasta. I did have the Benadryl premed with the first couple of Avastin-only infusions, but my onc agreed to stop that since I never had any sort of allergic reaction. So with the Benadryl drowsies out of the picture, the Avastin was a non-event which didn't affect me at all, and the only thing that reminded me I'd had it was seeing the bandaid on my port when getting ready for a shower that night. The only long-term affect was slow healing, not only of skin scrapes but also muscle strains from exercise or normal daily activity. Now that I've been off the Avastin for a few months, what I thought had become a chronic shoulder problem has resolved and I'm slowly building up my atrophied upper body muscles. Aloha,

Ned