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nicolerod Member Posts: 2,877
January 2020 edited January 2020
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Linda...what a great run on X!!! Wishing all the best on Ibrance. As mentioned above the Ibrance thread is really good.
dorimak Member Posts: 89
January 2020 edited January 2020
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Hello, wondering if anyone is on Medicare. I transitioned in January and have been having difficulty getting my Xeloda prescription filled. When I was looking for a Part D plan I plugged in Xeloda and it didn't come up on any plans. I was told at my doctor's office that all chemo is covered by Medicare even if it's oral chemo. I bought a Part D plan and they're saying it's not covered. So if it's covered under regular Medicare, I don't know where to have the prescription filled. Wondering if anyone can shed light on this. Supposed to start up this week and still can't get my prescription filled. Blessings to all.
JoynerL Member Posts: 1,392
January 2020 edited January 2020
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Dorimak, Medicare does cover xeloda. My MO’s office always fills the prescription.It doesn’t appear to be available at regular pharmacies.
snooky1954 Member Posts: 850
January 2020 edited January 2020
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Dorimak Do you have Medicare Part B? I did not when I was put on Zeloda. I paid out of pocket for first few weeks until we could get ins straightened out. A nerve wracking time, for sure. Once I got Part B put on my plan, they started paying for the Zeloda.
Just of interest-- The pharmacy at my Onc's office let me pay for the pills at his cost. Two weeks (taking 3000 per day) cost me 268.oo When my Zeloda was filled at Walgreens Special Pharmacy it said on the receipt that ins. paid $4977.OO. for the exact same script. Isn't that mark-up amazing?
Your correct there are no Part D plans that cover chemo.
Leee Member Posts: 115
January 2020 edited January 2020
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Does anyone have problems 1. Talking so many pills at once with a lot of water - it makes me feel full & nauseous. 2. Drinking enough water.
Kattysmith Member Posts: 688
January 2020 edited January 2020
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Dorimak - Like Snooky, my Xeloda is covered under Medicare Part B. That might be the problem. I hope yuo get this straightened out asap!
dorimak Member Posts: 89
January 2020 edited January 2020
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Snooky, Joyner and Katty, thanks for your responses. I FINALLY got it resolved. I spent three hours on the phone this morning between my Part D, (CVS Caremark) and my medigap insurance and literally nobody seemed to have any idea what I was talking about. Finally my MO did call it into the pharmacy at the affiliated hospital and like you said it's covered with zero copay by Part B.
Snooky, your story is so troubling. I actually worked in IT in the pharma industry and they really do charge what they want and drugs vary wildly between pharmacies. If you look at the GoodRx app for non specialty drugs, the costs vary a lot. A benzo I am on can cost anything between $28 and $80 WITH A COUPON. It's disturbing that it's a shot in the dark with picking a Part D plan as they can just decide to drop coverage even n the middle of the year for a certain drug. Anyway blessings to you all on this journey.
Linda11111111 Member Posts: 28
January 2020 edited January 2020
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Hi Dorimak! Xeloda is covered by Medicare Part B because it converts to an i.v. chemo (5FU) in your body. All other current pill form chemo isn't covered. The pharmacy at my doc's office has to bill it just like it's i.v. chemo. Glad you got it straightened out and hope you get a nice long run on it.
denny123 Member Posts: 1,450
January 2020 edited January 2020
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dorimak..I had my answer all typed out, but essentially it was what you eventually found out.
Good luck!
nicolerod Member Posts: 2,877
January 2020 edited January 2020
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Leeee I am on 2500mg a day...but 1 week on 1 week off and this is only my 2nd cycle on that higher dose...but I am feeling it now...my fingers are worse and I have had nausea actually today and had to take the medication they give for that....if it continues to get worse she will probably have to lower my dose back down. I also am having loose stools or diarreah actually
and I am usually consitpated...Leee Member Posts: 115
January 2020 edited January 2020
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NicoleRod-
I’m on week 2 of first cycle. Do you have any issues taking the pills or any advice? They make me nauseous & full feeing (plus the water).
nicolerod Member Posts: 2,877
January 2020 edited January 2020
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Leee Didn't your MO give you nausea medication with it?? If not, call and ask for it. Yesterday was the first time I have gotten a really bad wave of nausea and I am thinking it is because I am on the 2nd cycle of the 2500mg a day...I took 1 pill of the nausea medication and felt better...but now my finger tips are starting hurt regularly and I have diarrhea....so if this medication is something that builds up more and more after every cycle I think my MO will have to lower the dose.
I have no advice on the pills and water....How many pills are you taking? I take 5 a day of the Xeloda 3 in the morning 2 at dinner... plus I take supplements and other stuff so pills don't really bother me...
snooky1954 Member Posts: 850
January 2020 edited January 2020
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Hello Lee, I'm so sorry for your troubles. This is just a shot in the dark but something you might consider. We all call it Zeloda but we are really taking the generic versions of it as you probably know. Reading thru these threads several have said that they cannot take the generic version prescribed to them. When the Mo changes where the drug comes from it's like night and day. Fillers, binders, and whatever else the generic manufacturers put into their drug...it's a crap shoot. BUT, it sounds to me like you are allergic to the generic Zeloda that you are receiving. Have a good talk with your Mo and see what she can do to help you.
I personally don't like generics, I've "read" that most are manufactured and shipped from China. Well, I worry about quality control a lot. And now with that virus going around in China, I worry more.Just wondering here, but why do some patients get stomach and ingestion issues right away? And the dreaded HFS? Could it be complications from different brand of the generic zeloda? There needs to be a study on this. If Zeloda works for you, it works for a long time.
Sorry for my rambling.
Blessings for you Lee, I hope you get this figured out.
Naesha Member Posts: 44
January 2020 edited January 2020
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Lee, i think it varies on person to person. I was initially on 14 days cycle and one week off. My blood count was very low so as iron. So my ONC decided to take the two week off and now i am on 7/7 routine. I am taking 3000 mg per day . Even it is 7/7, i still feel nausea everytime in the morning only so i take the nausea meds with it. It helps little bit but that it will make my nausea completely go away. The only part I am struggling is fatigue. I have started to notice it from my second week of first cycle. So after the discussion with my ONC, now i am doing 1000 mg (2 pills) in morning and 2000 mg (4 ) in the dinner time. I decided to do this way because usually i feel nauseated and fatigue in the morning. Dinner time i don't feel any.
So far i haven't seen any side effects kicking in my hand and feet yet. But i do experience the cramp time and often below my hip area. I try to drink as much water i can and sometime with electrolyte in it.
Take care ladies.
nayda985 Member Posts: 270
January 2020 edited January 2020
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I will be starting Sunday 4000mg/day. (4) in the am (4) in the pm for seven days and off for seven days.
This is going to be hard for me. I hate taking pills. Pharmacist I spoke with say the pills are big. So I pray I am able to do this.
Cost is $125 thru my insurance. Gotta see if there's a coupon or extra help at my cancer center. I cannot pay that every month.
Pharmacy is going to mail the med to me, which is new for me, I am used to going to the pharmacy to pick up my medicine.
Glad I have yall to take this Xeloda ride with.🍷🍸🍹🍺🍻🥂
goldie0827 Member Posts: 6,830
January 2020 edited January 2020
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Nayday, there are programs out there to help with payment. I think it was Good RX that paid for mine, and I have the Lily Foundation that covers my Verzenio. I never paid a penny for X.
denny123 Member Posts: 1,450
January 2020 edited January 2020
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nayda-they aren't that big! I have no problem taking them.
And your chemo center really should have a coupon for you.
I would ask to have to sign for the pills, since one time UPS left them at my neighbor's house. Heck, they cost $8,600! I had to hunt them down. And the house that UPS said they left them at, was not the one where they were.
Seriously.
nicolerod Member Posts: 2,877
January 2020 edited January 2020
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They are not big at all.....
Ok ladies...I have diarreah....
...... I messaged my MO yesterday..she said to stay the course this week and see how things are on the off week .....It's so strange..I had it yesterday so I ate 2 bowls of Rice Chex and had rice at dinner and then this morning I was almost consitipated (rice does that to me) but I went... then again tonight bad diarreah ??? Anyone experiencing this?
denny123 Member Posts: 1,450
January 2020 edited January 2020
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My 4 years on Kadcyla made me constipated forever. And it continues. I was hoping for at least an equilibrium.
nicolerod Member Posts: 2,877
January 2020 edited January 2020
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Also wanted to ask....are anyones feet itchy???? Mine are so itchy ....they hurt a little but they are itchy too??
Kattysmith Member Posts: 688
January 2020 edited January 2020
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Nayda, I used to have trouble taking pills so I would take them with some tomato juice which was just viscous enough that would help them slide right down.
Nicole, my right foot is itchy from time to time but not too bad. My HFS waxes and wanes.
However during mt first cycle in Nov., I deveopedsome red splotches on the lower half of my right leg. At first I thought they were some sort of bug bites but I never went away so I showed them to the nurse and December and early January. They didn't hurt or itch so I wasn't that concerned about them plus they wern't spreading. Well over the past few weeks that has changed ...they've spread down onto my foot and are now reddish-purple and scabrous. OTC hydrocortisone cream hasn't helped.
I'm going to see my MO today so hopefully they will get me something to clear this up and possibly lower my dose, as I am still extremely fatigued, too.
Yall have a good weekend,
Katty
Naesha Member Posts: 44
January 2020 edited January 2020
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So far no itchy for me and no diarrhea as well..Tomorrow will be my last day for 2nd cycle, I started to take 2 in the morning and 4 in the dinner time and it has helped me on the nausea and fatigue that i used to get in morning. I am checking with my ONC if i can take all meds 3000 mg only during the dinner time so that i do not have to go through the nausea and fatigue during the morning and day time.
Take care ladies.
lizo1 Member Posts: 94
January 2020 edited January 2020
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Nicole - Liz has terrible diarrhea off and on and it's never predictable. She is on a 14/7 cycle and it can happen during week 1, week 2 or her week off. It typically lasts a few days and then seems to resolve itself. We've tried to relate it to specific things in her diet but there is nothing that is 100% consistent. Liz has been on X for a little over 1 year.
One thing that does seem to help her digestive system is taking a digestive enzyme when before and after she eats.
Grant.
leftfootforward Member Posts: 1,396
January 2020 edited January 2020
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from another thread of a dug I’m on that causes horrendous diarrhea, apple cider vinegar helps with controlling it. There are some who take it in pill form, done who take it in liquid form.
Be careful however, as it does change the ph of the digestive track so if your meds need a certain environment check first.
nicolerod Member Posts: 2,877
January 2020 edited January 2020
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Grant...thanks for the reply...my seems to be sporadic too...I am taking a probiotic a good one with 50 billion CFU.... I take it at noon Maybe I should take it before dinner because I usually start going after dinner...again had it last night and this morning I went back to the rice chex and I haven't gone all day...
Leftfoot thanks I think I will avoid the apple cider vin. right now as I do not want to risk interference.
Kattysmith Member Posts: 688
January 2020 edited January 2020
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Update on my morning post:
I saw my oncologist earlier today, and he doesn't think these lesions are some unusual side effect of Xeloda ; he thinks they may be shingles, so he's sending me to my dermatologist early next week to confirm. Crap.
Unrelated to that, he is taking me off xeloda for 7 to 10 days until the redness and peeling on my hands and feet resolves, then he is going to start me back up on the same dose, but with a one week on one week off schedule to see if that helps. I haven'the really been that bothered by my HFS, but he didn't like what he saw and didn't want it to get any worse. I'm not happy about suspending the Xeloda, but I do trust him. I asked him if couldn't he just lower the dose and have me keep taking it, but he wasn't comfortable with that. He jokingly put my husband in charge of making sure I didn't take any more xeloda until I got the green light- ha, ha!
Have a good weekend all,
Katty
goldie0827 Member Posts: 6,830
January 2020 edited January 2020
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My MO never took me off X due to HFS, I was on for 5 years. I've been off of it for over 2 months now and still have issues with my feet and very little still with my hands. The drug excretes through your hands and feet, so I really don't think there is a way to avoid it, but to keep more comfortable with lotions and such. Just my opinion.
nkb Member Posts: 1,561
January 2020 edited January 2020
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KattySmith- if you have shingles you should be seen today- starting antivirals early (if appropriate) to help prevent post herpetic neuralgia. if you don't have shingles- consider getting the shingrix shots right away.
Kattysmith Member Posts: 688
January 2020 edited January 2020
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I'm seeing my dermatologist on Tuesday. My husband had a horrible case of shingles last year, very, very painful and of course there is lasting nerve damage. And yes I have had chicken pox so with my suppress immune system there is a real likelihood that this is what's going on.
If that's not what it is I am planning to get the shingrix vaccine.
nicolerod Member Posts: 2,877
February 2020 edited February 2020
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Katty sorry to hear about shingles...what was your X dose again?
and I am usually consitpated...«1…358359360361362363364…462»
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