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March 2020 Chemo

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  • etnasgrl
    etnasgrl Member Posts: 185

    Cassandra.....I am a patient advocate for an insurance company, I may be able to give you some advice on getting Neulasta covered by your insurance. (This is what I do everyday as part of my job!)
    About 90% of insurance companies WILL cover Neulasta, however you have to go through the proper channels. It can be a pain in the rear, but worth it, if they approve.
    Can I ask what insurance company you have?
    Most require getting a Pre-Authorization. This comes from your oncologist. They can fax over the request to administer Neulasta, along with your medical records, to prove medical necessity. A little more than half the time, this is enough to gain approval. However, sometimes insurance companies will still deny because Neulasta is expensive and to be honest, they do not want to pay.
    If you are still denied after doing a Pre-Authorization, appeal! Request a peer-to-peer review. This means that your oncologist will have a telephone or video chat with an oncologist that works for the insurance company. Your oncologist basically states your case and your need for Neulasta.
    I would say that about 80-90% of peer-to-peer appeals are approved. Again, it depends on the insurance company and your personal case, but it's worth a shot!

  • Jettie
    Jettie Member Posts: 63

    Cassandra, I am on Udenyca which is similar to neulesta, my Oncologists office must off applied to the manufacturer for co-pay assistance as i got a letter in the post from them out of the blue saying that I was enrolled in their program. This may be an alternative to talk to your insurance/oncologist about, just a thought :D

  • Cassandra6430
    Cassandra6430 Member Posts: 22

    thank you all. Yes I’ve gotten to the peer to peer level and was still denied. It’s crazy as they’ve covered everything else. But it’s been good to go in daily and be seen as I’ve been so sick and needed more care than just the shot so it’s been a blessing. They are starting zyprexa at night for nausea. I’m not excited about adding an antipsychotic Med but am desperate to get better.

  • etnasgrl
    etnasgrl Member Posts: 185

    Cassandra....I'm sorry that you were still denied, but I'm glad that it worked out for the best.

    Tomorrow is treatment #4 and I am a nervous wreck! I'm really, really hoping that I do not have another allergic reaction to the Taxol. I do NOT want to switch to another chemo. I just want to finish what I started and be DONE. Hopefully, the slow drip works and I can get through it with no issues.
    If you think of it and don't mind.....can you life up a prayer or two for good results? Thanks so much!

    Heart


  • sharlyn25
    sharlyn25 Member Posts: 15

    Prayers for you Etnasgrl. Such a stressful time. Hope all goes well today!

  • Cassandra6430
    Cassandra6430 Member Posts: 22

    sending love etnagr

  • etnasgrl
    etnasgrl Member Posts: 185

    Thanks guys!

    Hug

  • helenlouise
    helenlouise Member Posts: 363

    hello March chemo people,

    I started my second round of taxol, hercerptin and perjeta without the taxol. My bone marrow is lazy from the previous treatments and has not bounced back from first round so I neutropenia. On the bright side the skin Mets look like they are receding already. The ulcer and skin discoloration is diminishing, so that is really positive. I am flush faced tonight but otherwise feel fine. Fingers crossed I can do chemo next week. The cancer Centre is quiet and no visitors unless you need physical support. First time ever I have seen my MO on my own and been solo during therapy. It’s no drama just different.

    For this who observe Easter wishing you a happy celebration and I hope everyone stays safe over the break. Best regards to all - Helen x


  • byhisgracetwice
    byhisgracetwice Member Posts: 218

    etnasgrl—prayer for all to go better today. On the allergic reaction. You might ask for the Taxol infusion rate to be really slowed down, much much slower than was done last time.
    Friend with a rare blood cancer was allergic to Rituxin. Was no alternative treatment for him at the time. Only Way to accomplish infusion without him violently reacting was to slow the infusion rate to 25 ml per hour. The total infusion each treatment was 750 ml. Impossible to do in the eight hours an infusion clinic was open, so every three weeks it was done as hospital inpatient.
    🙏

  • Nooch40
    Nooch40 Member Posts: 22

    How’s everybody doing!?

    Praying for you etnasgrl!!! 🙏 Been thinking about you today.

    I’m sorry you couldn’t get your taxol today helenlouise. Did they give you anything to bring it back up? Did they happened with just one dose of the taxol?

    I am sorry Casandra you are having such a rough time. How many treatments do you have left?

    I finally got my wig today. She shaved my hair also 😭 that was so incredible hard. I HATE looking in the mirror now. I finished my fourth treatment yesterday. 8 more to go. I was on my steroid high yesterday but tired today. I took an epsom salt bath last night and it helped with the aches.

    Happy Easter to everyone!! It will be a very different Easter this year.

  • etnasgrl
    etnasgrl Member Posts: 185

    Hi guys!!!

    Well, the slow infusion worked, praise God!!! No issues or reactions, yay!!!

    We will continue with the slow drip at each infusion. It's 3 hours instead of 1, but it's really not that bad. By one hour in, I could no longer feel my fingers and toes from the ice, so it was easy to keep the ice on for the additional 2 hours, lol. And I was actually able to take a small nap during it too, so that was great.

    Hope everyone has a wonderful weekend and Happy Easter/Happy Passover!

  • etnasgrl
    etnasgrl Member Posts: 185

    Nooch…...

    (((((Hugs))))) I remember feeling that way when I had my head shaved, it was awful. I'm so sorry.
    Within a week or two, I did get used to it though and now it doesn't bother me near as much. I hope the same for you!

  • Cassandra6430
    Cassandra6430 Member Posts: 22

    so glad to hear from you all! I have 4 more treatments of tchp then will be undergoing double mastectomy as my genetic tests showed a check 2 mutation that puts me at higher risk. Then I’ll do 6 treatments of hp. But I think that will be easier than the chemo so I just need to get through 4 more treatments of those. This entire ordeal is quite the roller coaster. Sending love to you all and happy easter!

  • Jks_Indy
    Jks_Indy Member Posts: 29

    Just coming up for air after my second treatment last week to wish all HappyEaster! Bone and muscle pain lingers from the Neulasta but nothing like it was earlier this week.

    I am glad that Cassandra and Etnasgirl are doing better. Nooch it really is hard at first to lose your hair but I try to comfort myself that it is a sign that the chemo is working. I still have eyebrows so thankful for that!

  • etnasgrl
    etnasgrl Member Posts: 185

    Speaking of losing hair......I just finished my 4th of 12 weekly Taxol treatments and I have not lost one single strand of hair. Not one! I even pull on a few, to see if it will come out easily and nope.
    I shaved my head, so as odd as this sounds....I'm really hoping that I lose it! I will be pissed if I shaved my head for nothing! My oncologist said that it should start to fall out around 14 days in.....I'm now at 28 days!!!

  • moth
    moth Member Posts: 3,293

    Hi, I'm late to this group but I started in March. I'm in a clinical trial and in addition to the meds listed below I'm also taking an oral drug/placebo.

    I have a question in case anyone else might have a solution- what to do about bitter mouth taste? In 2018 I got mouthsores & had the magic mouthwash (which was gross imo) but I don't remember a bitter flavour in my mouth. This time my mouth just tastes yuck all the time. Any solutions?

  • Jettie
    Jettie Member Posts: 63

    hi moth,

    Welcome to the group, cant say i have a solution, feel like i am sucking on a iron nugget most the time, very metalic. dry biscuits like maria ones tend to help knock it back for a while for me. I also have biotene for dry mouth, but not needed to use it much. I do hope it gets better for you and some of the others have solutions :D


  • Jks_Indy
    Jks_Indy Member Posts: 29

    Hi Moth! So sorry you are having bitter taste. I don’t have a bitter taste but I find myself constantly wanting a lemon drop candy. My taste buds have gone wacky and the only thing that tastes very good is sucking on lemon candy, eating citrus, etc. When not on chemo I have a condition called geographic tongue.....basically weird taste buds. There are times I have to put a little sugar on my tongue to counteract bitter or weird tastes. Maybe some of the ladies will have some better solutions for you. have you tried a baking soda/salt mouthwash? I put lemon or orange slices in my water too.

  • etnasgrl
    etnasgrl Member Posts: 185

    Hi Moth and Welcome!!

    SillyHeart
    I have that bitter and metallic taste too. I was talking to my infusion nurse about it the other day and she suggested vanilla, saying vanilla cuts the metallic taste. She recommended trying vanilla ice cream or frozen yogurt. I tried it and it works! It's not 100%, but it definitely helps!

    And as for my hair.....wouldn't you know that when I got done with my last post, I tried to tug on some hair to see if any would come out and sure enough.....it came out with ease. I kept tugging and ended up with a good amount, (about a fist full), of hair in the sink. So, I guess it is going to fall out after all.

  • dup403
    dup403 Member Posts: 15

    Hi there everyone! Just a little update, I'm day 11 out from 1st treatment. Looking back I would say day 4-5 were my worst feeling days. Lots of aches, pains and very tired with a bit of d, which Imodium took care of. Everyday since then I have felt a bit better everyday. Today almost feel like myself! These last couple days I have a constant drippy nose and horrible salty taste in my mouth all the time, nothing cuts through it.... food tastes are a bit off but keep eatting to find something that tastes like it should. That may catch up to me lol. So far hair is holding on but my head is quite itchy, not sure if that's a sign or just dry skin.

    What I've learned so far is ask, ask and ask again about anything you are concerned about or not sure on how to handle side effects. I called my CC a couple times and nurses were wonderful on giving me ideas on what to do or what to take.

    Corona is still a major concern and Cancer Center has now issued a no visitor/care giver allowed at any appointments or treatments so I'll be on my own going forward. Happy I had husband with me for the 1st round and now I have a better idea of what to expect.

    Hope everyone is doing well, staying safe, staying healthy! Happy Easter

  • Jettie
    Jettie Member Posts: 63

    me next week hopefully :D

    image

  • sharlyn25
    sharlyn25 Member Posts: 15

    Hi all,

    Completed 4th session yesterday. Our infusion center is asking all patients to wear masks to treatment which I totally support. Problem is they are having trouble getting any so they ask you to wear your own. I know many think there are plenty of supplies out there but when a cancer center can't get them, I think not. The billing, reception folks all have homemade masks on as even though those treating you wear medical face masks, they don't even have enough for them.

    Hair falling out by the buckets full. You would think having a hairstylist for a daughter, I could get her to buzz this off. But, she is in denial. Says it would make her sad. Keeps telling me ways to keep my hair. Oh boy. Might have to have hubby cut it really, really short. Wouldn't want him using the clippers on me. That is scary!

    Hope this is a good day for everyone!

  • Jettie
    Jettie Member Posts: 63

    Hi Sharlyn, sorry to hear your daughter wont cut it for you :( mine got the clippers on my head for me, it was her first time ever using clippers and the results were a little hit and miss here and there as she was nervous and was being very careful, but i am glad she did, as I am getting more and more bald spots and having only 1/2 inch of hair come out at a time it is less nerve wrecking/drepressing. It was awful when it was long and by the handful :( I did keep a lock as a reminder though. You may want to tell her how sad it is making you having it come out in your hands, if not am sure DH would do a way better than my daughter did :D

  • sharlyn25
    sharlyn25 Member Posts: 15

    Thanks for the advice, Jettie. You are so right. I will tell her that. It looks like I have a long haired dog around here. I am always getting the vacuum out. And, of course, if I am in the kitchen preparing food, etc., I must wear a head covering.

  • Jettie
    Jettie Member Posts: 63

    Morning ladies, was wondering how were all doing, hopefully not too bad, considering the crazy times were in.

    Julie, any chance we can add a roll call to the original post for this thread?

    Be safe and take care!!!

    Hug

  • etnasgrl
    etnasgrl Member Posts: 185

    Good Morning Jettie!

    Smile
    I am doing okay. This week has been a little rough. I've had weird stomach issues, that I haven't experienced so far on Taxol. Not hurting or nauseous, just "off" and zero desire to eat anything. On Easter, I made myself eat some ham and mashed potatoes, but I really had to force myself and even then, I only managed about one small slice and half a scoop.
    Granted, I can stand to lose a few pounds, so I'm not worried....but the "off" feeling is not pleasant and I hope it doesn't stick around. It started on Saturday and while it's a little better today, I still have no appetite. Oh well....things can always be worse, right?

    I hope everyone is doing well.....update when you can!

  • sharlyn25
    sharlyn25 Member Posts: 15

    Hi all!

    I have my infusions on Friday so I am good for the week-end. If I am going to have any problems, they will show up Monday or Tuesday. It is really strange how every week is a little different. Some weeks I have the aches and sharp pains and some weeks not so much. For some reason I get diarrhea on Monday. I will experience exceptional fatigue for part of the day and feel energetic the rest of the day. I would say that I never plan anything for Monday or Tuesday...but that would be before Covid. Now I never plan anything on any day no matter how I feel.

    So we are all moving right along and soon we will be done. Of course, my doctors have told me that even if Covid would go away, I need to stay home for 3 to 4 weeks after chemo is finished. So I figure...July 4!

    Take care and be kind to yourselves!

  • paula13
    paula13 Member Posts: 1

    HI. I started 5th March. I am about to have my 3rd infusion tomorrow (Thursday) of AC (Red Devil). Feeling completely normal the last 2 weeks. It seems to affect me for about 7 days with mild morning sickness and constipation. The insomnia however is ongoing.....

  • Jks_Indy
    Jks_Indy Member Posts: 29

    Hello all,

    Jetty I don’t know how to do a roll call. I looked in the help section. If you know how, please do it. To be honest I am not exactly sure what you mean by roll call 😀🤣.

    welcome Paula13! We have several ladies who are doing AC. A number of women on Taxol. And I believe there several of us having Taxotere/Cytoxan, including me. I hope your next infusion goes well!

    sharlyn....I am with you on not planning much of anything. I miss gardening, my oncologist told me I couldn’t do my normal gardening routine and I really miss it. It is my therapy. So I have turned to baking as my therapy and am making way too much bread, cookies and sweets. But I use them as thank you so for friends who get me groceries or medicine. I am trading sugar for bread flour with a friend tomorrow. Never knew I would be so excited to get flour. It is impossible to get in my small town.

    How are others dealing with getting groceries or medicine? How are you all doing with the social isolation? I am normally a very sociable person and it has been hard to scale back to just my son, me and a dog.

  • Nooch40
    Nooch40 Member Posts: 22

    Hello everybody!

    I am sitting in the chair hopefully going to get my 5th taxol. Just waiting on bloodwork to come back!

    Welcome Paula!

    You are so right Sharlyn with each week bringing different side effects! I forgot about those sharp pains. I had those with week 1 but haven’t had them since. I wonder what this week will bring. Week 4 was pretty tolerable. What week are you on?

    We did instacart for the first time for groceries and it worked out well. It was hard to get a delivery time but then one became available that day. We cannot find Clorox cleaning supplies anywhere.

    Can I ask why no gardening ? I never thought to ask my oncologist. But we are not doing one this year anyway bc I don’t want to go to the store for plants or supplies.