iowagirl
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Christopher, I did 5 rounds before the gem/cis really slammed me with reduced blood counts and kidney numbers rising. Needed a transfusion at that point. After sitting out an extra week, I did the final round of chemo (6 rounds) and called it good. For me, the chemo was an adjuvant chemo (following successful surgery) in hopes of killing off any stray cells that might have escaped the surgery. Blood counts now are pretty much normal, though hemoglobin has taken a long time to even get to the bottom end of normal. My kidneys sustained enough damage to stay just slightly above the normal range and appear to be stable there. I don’t think that they would have me do chemo again. It was briefly mentioned after surgery for recurrence, but because of the side effects I had, it was decided that it probably wasn’t worth it. And…of course, the CC had returned in spite of the first chemo, so doing chemo again seemed more like a waste of time and side effects.
One more note about Medicare. If you are going to go on Medicare during a year, and you want to have a Health Savings Account, you will only be able to put in $$ for the proportion of the year that you are NOT on Medicare. The bank/credit union/etc that sets up your HSA will know what the formula is to determine the amount you can deposit into the account.
In my case, I set up the account back in Jan or FEb, before I knew that I was going to be on Medicare as of July 1. So, I will need to contact the credit union and ask if I need to do anything or if since I did it before finding out that I was going to be on Medicare in July, I can leave the amount alone. I have been not using the account for now…until I get questions asked and get it straightened out.
More to come as I get info.
Julie T.
My ducks “were” in a row, back in 2014, but now things have changed regarding insurance and SS and disability.
When my husband retired, he effectively changed my insurance status with the company (a retiree’s policy ) and with SS.
Sincre I was no longer on an active working person’s group policy, I no longer could opt out of medicare until 65 while on disability. So, recently, I received a letter from SS saying that as of July 1, I will be on Medicare, whether I like it or not. If my husband had continued to work…..and stayed on the active employee insurance plan, then we could have gone forward with the original plan. But, …… that one change messed up the best laid plans.
At first, I was miffed, but figured that I’d just get the really good supplement like my husband has and so be it. However, today, when I called to sign up for one, I found out that there is NO supplement available for me in our area since I’ m on disability. Nobody is selling it. I am forced to take a Medicare Advantage PPO type policy instead. It will only be until next April 1, when I turn 65 and then can convert to a supplemental type insurance and drop the Medicare Advantage, but it still is a problem because no cancer center in town or anywhere remotely close is in network. And….I go to Mayo Clinic in Rochester for my oncology appts and scans…and they are not in network, nor are the hospitals. I can still go there, but every thing will be 40 % of the cost for my out of pocket. I did find out that there is a deductible amount at least…..$7500 for out of network doctors/hospitals/services per year so once I have reached that, I will no longer have to pay, even in out of network facilities. It will be a big pain …..as I will have to pay any bills personally and then apply for reimbursement. And.. . .I’ve already been on my retiree policy for half a year and almost met that out of pocket max of almost $5K. It would be “nice” if the out of pocket amount we’ve already paid with the retiree policy could transfer to the Medicare Advantage policy, but I don’t think that would be the case. If I find out any different, I will post about it.
As I said… ..at least it is only until next April 1 …..but we had worked so hard two years ago to make sure that everything was set up . But, at that time, I did sa y that an ything can change…and that especially goes for the government. Sooooo, …….. as you can see, everybody’s situation can be different…and it certainly can change. I was very upset earlier today, but eventually calmed down when I found out the max amounts I would have to pay. And….I don’t care for the idea that there are so few places that take Medicare Advantage . But, I need to keep my fingers crossed that nothing major comes up the rest of this year and next year until April 1.
H ope this might help somebody else..
Julie T.
Paul….congratulations on the success with Merck. I’m so excited for you to get to try this. I realize it is a shot in the dark….but I hope it is a shot heard around the world!!!! We will all be waiting to hear results as they come along….and wish you the best.
Julie T.
Mariza,
You have my sympathies . It is very hard to get through the death of a father….esp one with whom you are close. My dad died of a different cancer, back in 1985, but his death came very quickly……just a couple weeks after his first symptom and within 48 hours of a positive biopsy disgnosis for a cancer that is also rare like bile duct cancer. He was 5 8 years young……..but no matter what their age, we have a hard time losing our dads. I still miss him very much…..over 30 years later. But, my thou ghts of him are rarely of his final days, but instead the positive things about him and how he always was a great day and did things with and for us. I hope and wish the same for you.
J ulie T.
Ashley Thank you for sharing the info on Tom’s response to the trial. It’s encouraging for al of us to hear that Tom is doing well. I’m sure he’d rather not have any bad effects from any of it, but if they are manageable, it seems to me to be worth it to stay here longer on this earth, as you say. Please keep sharing.
Julie T.
I can’t think of anything to add….except that I am thinking of you and sending healing thoughts and cyber hugs your way.
JulieThanks….. doctors don’t give much promise of the kidneys getting better, but they said they are stable….and they are happy with stable.
Julie
Hi…..yes, I also had similar side effects to the chemo . I had lost 60 pounds in the year and a half prior to being diagnosed (was dieting…wasn’t the cancer). I had surgery, followed by chemo and the weight gain started. I regained almost all of what I’d lost in the 4 months I was on Gem/Cis. I also had decreased appetite, very bloated feeling . Also did not ever have constipation from the chemo. Nausea was there but manageable and the heartburn continued for quite a long time after chemo ended, even with Prilosec during and after chemo four months. Some of the weight gain may be related to the steroids that some patients are given during infusions. The steroids help with the nausea, but they can cause a lot of weight gain. My kidney function took a hit from the chemo ……..which hasn’t gotten better sinc e being done with chemo now about ayear and a half later.
I don’t think the weight gain was ever all about the steroids……just not sure what was the total cause…..maybe a combination of everything.
Julie T.
Marion, The proposed website section gears toward possib le treatment options and clinical research studies is muchly needed and another reason the CC Foundation is the best place for CC patients to look for CC info and treatment. The foundation continues to update and expand and be “more” to our patient and caregiver community. Kudos to all those who are out front or behind the scenes, working to make this website and the foundation better. You never know when one post or one new piece of info might give someone a better quality of life, or even save a life. Thank you all for every thing y ou do….and for just being here for us.
Julie T.
