Starting Chemo December 2015

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  • Karenbo
    Karenbo Member Posts: 61
    edited March 2016

    Twirp - SO excited things are looking up! Thanks for keeping us posted. You are strong and a fighter! You've got this! Sending prayers & hugs your way.

    Thinking of you and praying for you Stotamom.

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  • LiLNutmeg
    LiLNutmeg Member Posts: 30
    edited March 2016

    Finally the weekend!    The cumulative side effects are taking their toll ...  I'm still dealing with the deep bone pain from day 3 to 5 .. it's almost more than I can take .   MO prescribed oxycodone which doesn't even touch the pain , but the pills make me feel loopy which I don't like .. and of course the constant headache, breathlessness  and exhaustion.    I've been working full time since starting the infusions (FEC) in December and now on weekly Taxol #6.    As tired as my body is .. I'm not really sleeping ..maybe 4 - 6 hours a night .. and mostly in  1 hour intervals.     Someone said the benedryl knocked them out .. I find I'm wired for sound the day of the infusion and don't sleep until end of day 2.  ... Okay .. rant and pity party over ... just getting tired of it all.    On a positive note ... going to attend one of the Look Good sessions with my sister ...will learn how to draw on the eyebrows and hopefully not have that permanent surprised look :


    Twirp ... so glad you are getting some positive news -  prayers and healing vibes being sent your way

    Back to my Netflix marathon .... we need to start an insomniacs group!  :)


    Love you all  ... /Beth



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  • Angtee15
    Angtee15 Member Posts: 209
    edited March 2016

    Stotamom was thinking about you yesterday! Hope everything went OK...did you bring someone with you?

    Pez so glad to hear that FEC is starting to kick in! This will all be in your rearview mirror soon.

    I had my first AC yesterday and it does indeed appear to suck. But I think I have all the right supplies to ride this BS out!

    Fist bumps anyone?

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  • Lyra10
    Lyra10 Member Posts: 59
    edited March 2016

    Angtee15

    ThumbsUp

    Fist bump back!

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  • stotamom
    stotamom Member Posts: 41
    edited March 2016

    Need more scans...found a couple spots on my liver. Think it may be cysts but want to be sure. I have terrible rib pain though and they can't find the cause of the pain. I can't have MRI's due to my expanders. So Monday I'll have yet another CT and a sono. Yesterday I had X-rays of my right lung and rib which came back fine. If the pain continues I may ask for a PET. Idk what to think. My daughter is home from school this week so I am going to enjoy my time with her! Thanks for asking!

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  • mvspaulding
    mvspaulding Member Posts: 446
    edited March 2016

    Stotamom, I will keep praying that they figure it out and there is nothing to worry about.

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  • chinookmom
    chinookmom Member Posts: 45
    edited March 2016

    stotamom - So sorry to hear you are still in pain and dealing with unanswered questions about the cause. I'm praying it is something benign and you can get back to concentrating on healing. So glad you have your daughter with you for a week! Please let us know when you know more. :)

    LiLNutmeg - I hear you on the bone pain. Had my Nuelasta shot yesterday and the Claritin doesn't seem to be helping as much as it normally does.. I can't imagine how hard its been to work full time right now. After #3 I couldn't do it anymore. I started my Netflix House of Cards season 4 marathon today. Let me know how your Look Good goes- I did mine over a week ago & there were some really lovely women in my group. You may want to bring some of your own makeup as each kit seems to be a little different and you may want to use colors that you know work on you. In the end i just gave the colors that wouldn't work for me to other people in the group. It was a funny mix of products but overall a nice experience.

    PezGal- I'm trying some glutamine powder mixed in with apricot nectar and water. Thanks for the tip!

    Hope everyone is enjoying their weekend as much as possible~!!

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  • puremalarkey
    puremalarkey Member Posts: 30
    edited March 2016

    I finished the 6 20x20 paintings for my 7 yr old grandson's bedroom. I don't feel so great after my last chemo 4 weeks ago. Not sick but weak and lack of energy. The dr said my hemogloblin was low but didn't say anything else about it. Two weeks of radiation down animaged 5.5 more to go. image For those who don't know about the Minecraft game that's Minecraft Steve, a cat, a miner, a cow, a creeper, and a pig.

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  • PezGal
    PezGal Member Posts: 99
    edited March 2016

    Getting quite on here.....

    Looking good Malarkey - I'm sure he'll love. My nephew is into Minecraft (4.5 yrs old). I don't get it...

    Has anyone tried to get their wig reimbursed by insurance? Mine says they cover up to $350 once per lifetime. I called to get a better explanation of the form but the customer service lady was useless, and I'm too weirded out to call back (afraid I'll get her again!)...

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  • Tesla
    Tesla Member Posts: 53
    edited March 2016

    Pezgal: I bought a $400 wig before chemo knowing that my insurance will reimburse it. However, after I filed the claim, UnitedHealth said I have to buy it from a "medical supply store"??!! Ugh....anyway, I was tired to argue with them and kind of let it go....

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  • KHinMD
    KHinMD Member Posts: 44
    edited March 2016

    PezGal - I remember my nurse mentioning the amount of glutamine you would need to get the right dosage would be a lot. It doesn't seem like the neuropathy has been getting any worse since taking the B6, but it hasn't gone away. My fingernails have been holding up, except for my left middle finger. My nurse said to watch out for oozing from infection. How lovely. Hope chemo 5 went well. Do you get 12 total of taxol? I got my wig reimbursed through insurance. I had to pay 10%.

    stotamom - Two months ago, my MO ordered a hepatitis panel and ultrasound due to my elevated liver enzymes. He said they may be a response to the chemo, but wanted to make sure it wasn't something else. The ultrasound identified a possible benign hemangioma, which was confirmed with an abdominal MRI. Any unusual symptom can be scary at this time, but it could be the body reacting to the chemo and creating a benign condition. I hope you get some answers soon.

    chinookmom - I thought about binge watching House of Cards. I'm 3 epis in. I am off next week for my last chemo, so I might end up watching a few then, if I'm not too fatigued.

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  • mvspaulding
    mvspaulding Member Posts: 446
    edited March 2016

    I checked with my insurance about my wig before I purchased and they said they would pay for one wig per year subject to my deductible. So I got my wig and paid for it up front and filed my claim. They ended up only paying for about 60% saying that I didn't go to a network provider (which there were none in my area), and they based it on what Medicare rate was in my area. If I had known it wouldn't be covered at 100% I probably wouldn't have spent as much as I did. It ticked me off but it took me like two months to get reimbursed so I didn't feel like fighting anymore.

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  • Angtee15
    Angtee15 Member Posts: 209
    edited March 2016

    Malarkey--great job with the paintings! You are inspiring me to do something a little more productive with my extra time:)

    As for the wigs my HMO clearly wants nothing to do with reimbursement for wigs. Oh well mine are pretty cheap and I've relied more on hats than I thought I would.

    Netflix Bingewatching update: We have one House of Cards episode left. Gonna finish it off tomorrow after voting in the Illinois primary (how appropriate). Daredevil is up next....

    Hope everyone is poised to have the best possible BC fighting week!

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  • Twirp26
    Twirp26 Member Posts: 178
    edited March 2016

    puremalarkey, your paintings are great!!! He will love them I'm sure!! Hope you get your energy back soon. I just sent my receipt to my insurance company to try to get reimbursed. I also have united so I wonder if they will tell me the same thing. A medical supply company??? Really??? I am so over insurance companies, doctors offices and everything that goes along with it. 😝😝😝😝😝 leaving tomorrow to go to Tampa. MOFFIT here I come. ❤️❤️

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  • chinookmom
    chinookmom Member Posts: 45
    edited March 2016

    Puremalarkey- Love them. I know nothing about Minecraft, but love your work! They look fabulous! So cool. Their friends will love them too I bet~ The anemia will certainly make you tired & can take a while to get back to normal. Your body just can't get the fuel it needs.

    KHinMD- Thank you for sharing your story about your elevated liver enzymes & how it was most likely related to chemo. I had had some additional tests at my cardiologist to rule out anything more serious as I'd been having some weird symptoms. Felt so much better to hear from Doctor that he believed it to all be chemo related.

    Are you 3 episodes into House of Cards Season 4 or the whole series? Its really good, but crazy dark sometimes..

    NETFLIX -I really enjoyed Foyle's War most recently & its one of my favorites. But also watched Daredevil a while ago and Vincent D'Onofrio is great in it. It takes a few episodes to get a good pace but glad I hung in for the whole series.. The Code was pretty interesting too & Miss Fishers Mysteries was fun, light and pro women. (both Austailan). I really enjoy some of non US shows where people look more like real people instead of everyone looking like models..

    Chemo #5 (last Thursday) has really wiped me out & just sucks right now.. Just have to get throught this one and one more... I can't wait for it to be over..

    (Oh, and today i realized i'm losing or may have already lost any decent shape to my butt. Looks like some one deflated it a bit. The anemia and lack of much exercise & basically too much time in bed is just making me out of shape... Certainly many more important things to worry about but just another reason to kind of avoid really looking in the mirror.. The chemo makes me feel so crappy that most of the time i could care less.. But it will be harder once i get over how bad the chemo makes me feel and actually get to see what i look like.. Most of the time i am just grateful i'm working my way through this all, but those superficial things creep in every once in a while.)

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  • chinookmom
    chinookmom Member Posts: 45
    edited March 2016

    Twirp26- Glad to hear you are on your way soon to MOFFIT. Please keep us updated! You'll be in my thoughts & prayers! :)

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  • chinacat
    chinacat Member Posts: 78
    edited March 2016

    puremalarkey great paitings. My kids give them the thumbs up:)

    Pez go online and print the claim form to get reimbursed for your wig. then you don't have to talk to anyone. It's frustrating to get someone who doesn't know how to help you.

    Safe travels twirp. Hope you get good news

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  • Sammy3
    Sammy3 Member Posts: 136
    edited March 2016

    My insurance company denied my wig too. And they've been great about pretty much everything. And when I called they said what Tesla said above - that I needed to go to a place they approve. Which turns out to be a medical supply store - well at least it was the only thing within 100 miles that they could give me. Whatever.

    I have also heard we can get bras - like mastectomy bras, and lumpectomy ones for those of us who are lopsided, lol. I am not sure how much I trust that, but whatever.

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  • Sammy3
    Sammy3 Member Posts: 136
    edited March 2016

    Can we talk neuropathy for a sec? I started getting it in my fingertips just in the last month or so. I asked the MO if I could take anything, and he said he could recommend something for pain, but the actual prevention of it, not really. I also asked if it will go away and he said "maybe". So what the heck?! Am I going to have numb-ish fingertips forever!?!

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  • NewDay123
    NewDay123 Member Posts: 71
    edited March 2021

    Hey Twirp26 and Stotamom, thinking about you and rooting for you!

    Hi LiLNutmeg - I'm sorry to hear about the bone pain. Yeah, I have pretty bad bone pain days 3-5 also with the shots. There were a few weeks where I just didn't move and leaned on a pillow. But I think that made it worse as I wasn't distracted sufficiently. So, some other weeks I moved around more (slowly and kind of hunched over) and did more brain distracting stuff to get my mind off the pain and to have time pass. That seemed to help a little.

    Lyra10 and Angtee15, <fistbump> :)

    Hi Sammy3, sorry to hear about the neuropathy. I was greatly concerned with it, too.

    For peripheral neuropathy in the fingertips, I massaged my wrist, hands, knuckles, fingers, and fingertips. The massage I did was that I pressed down all the way down to the bone where I should "feel" pressure and tiny bit of pain -- for areas that didn't feel any pain nor much pressure, I would work around the area where I did feel something, and move towards the area that didn't. So I spent a lot of time just pressing down hard, to the bone. Which was useful for both hands to do, because one hand was getting a work-out while the other got a 'massage'. Also, finger/hand exercises, hold 2 tennis balls and roll them around. Strength and stretching exercises, too.

    For peripheral neuropathy in the feet, using my hands, I also pressed down to the bone, especially since I started feeling numb in the heel and ankle areas, too. It was probably helpful to my fingertips and hands to be having such a workout by self-deep-massaging my feet, toes, ankles, and lower leg. I had felt tingling at my knees also, so massaged there too. Lots of ankle exercises. Must work the muscles also. Finally, whatever room I was in, the room probably felt like summer-time and was kept very very warm. I linked to this in an earlier post: http://www.massagetoday.com/mpacms/mt/article.php?.... Hopefully this is helpful to someone.

    Puremalarkey - So cool! My kid loves minecraft too! :)


    I'm often sad to read and hear how some of you are having a hard time. But I'm also glad to know we aren't alone and we're all here to cheer each other on and to get through this. Thinking of all of you!

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  • puremalarkey
    puremalarkey Member Posts: 30
    edited March 2016

    Good luck tomorrow Twirp! Wave when you drive by Ocala :)

    Thanks for all the likes and thumbs up on the paintings. It'll be another couple weeks before his 'surprise' themed bedroom will be done but I'll post a photo when it is.

    A friend of mine with hand neuropathy passed on a suggestion from his PT he said to desensitize fingers massage them in a bowl of uncooked rice. It's only temporary but may help if you need to type or do something with your hands for a few hours.

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  • stotamom
    stotamom Member Posts: 41
    edited March 2016

    Ugh....no real answers! Next step a PET scan.

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  • PezGal
    PezGal Member Posts: 99
    edited March 2016

    Rice? Interesting... I'm trying to do the B6 and Glutamine as prevention, but who knows? No neuropathy yet, but maybe I'd never get it. I seem to jinx myself when I say stuff, so I'll probably get it next week.

    I kinda figured the insurance responses would be all over the place. I guess I just need to put on my thinking cap and figure it out, be persistent. If I get it, that's great, if not, its not the end of the world. I just hate talking to people on the phone. I tried filling the form out and it contradicts itself so I'm gonna need outside help. Oh well...

    Yeah, KHinMD, I have 12 taxols. 5 down 7 to go. I feel like I'll be the only one left on here by May!

    I would LOVE to binge watch Netfilx. I still have one episode of Orange is the New Black and one episode of Making a Murderer. I'm behind the times. The only things currently in my queue are Scooby Doo and DinoTrux. I DON'T recommend either, unless you party with the under 8 years old crowd like I do (even then, I still wouldn't the Scooby Doo, makes me mad because Velma & Daphanie are too girly). Although, I am looking forward to the new Pee Wee movie coming out Friday. Big sighs... I miss adult time. :)

    LiLNutmeg - I too didn't like the oxycodon at first. Now I can see how people get hooked on it. It gives me an overall sense of peace. Good vibes. "Aloha, Mr. Hand!" However, I will not get hooked on it because, other than having the good sense to not get addicted to drugs, the next day it gives me horrible booty problems. I've pooped fire enough that the oxy left over from my surgery in October only comes out on especially painful days. Beware of narcotics and booty problems!!!

    Anyone know the biology of hair? Week 2 of AC, mine fell out like crazy. I didn't buzz, but cut it short (about 1/2" long), had maybe 10% left. After about 4 days all body hair froze. Didn't fall out, didn't grow. Was that way for a while. Cut to my 3 weeks btwn AC and 1st taxol, and that 10% started to grow, no new growth (the other 90%). Awesome-sauce, its growing! I had to trim my sad excuse for bangs! Taxol #2 and beyond, my 10% was knocked down to 2%, but now I have very short peach fuzz all over, obviously new hair. But I noticed last night if i take tweezers to them they come out without tension. I can't rub them off, but can pull them off. Even the 2% sticks through showers, but if I pull they come out. My eyelashes are like this too. So..... are the hair shafts just loose and if i stop pulling they'll continue to grow? Or is it just dead hair if it can be pulled out that easily? Wondering if I should pull it out to make space for new hair? <- That might be the strangest question I've asked in a while. I've been obsessing about hair lately....

    Good luck Twirp! Hope your scans went well Stotamom! <- edited to say I just saw (above) you got no answers. Hope the PET scan works out!

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  • stotamom
    stotamom Member Posts: 41
    edited March 2016

    PezGal - how much glutamine was suggested? I have 500mg capsules and take two of them a day. My neurologist also told be to make sure I take a vitamin B complex with at least 100mg of Thiamin. He now checks both my hands and feet for neuropathy. I see him every three months. He stressed that the Thiamin was very important for neuropathy.

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  • PezGal
    PezGal Member Posts: 99
    edited March 2016

    I've never even heard of Thiamin! Google here I come....

    My dr said 15 grams. Its a big pile of powder! So 500mg pills, you'd need 30 pills a day to get to the 15g. The Glutasolve packages come 15g ready to go.


    image

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  • stotamom
    stotamom Member Posts: 41
    edited March 2016

    SO not taking 30 pills! lol Going to find the powder.

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  • chinookmom
    chinookmom Member Posts: 45
    edited March 2016

    This is the one i've been taking from Amazon.com $19.95 per pound. Also supposed to be good for chemo mouth SE.

    image


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  • Sammy3
    Sammy3 Member Posts: 136
    edited March 2016

    Good luck today Twirp! And Stotamom, when is your next appt? Keeping you guys in my thoughts!

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  • stotamom
    stotamom Member Posts: 41
    edited March 2016

    Sending prayers your way Twirp! I have to call today and see what my schedule is. I did not receive a new one when I was at my infusion yesterday.

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  • NewDay123
    NewDay123 Member Posts: 71
    edited March 2021

    --------------------
    Mar 9, 2016 01:32PM     PezGal wrote: "NewDay123 - AC #3 was when I hit the wall too. Neulasta stopped working, low WBC's, hospital stays, blood transfusions... Big sigh. I did have a shrinking or tight sensation." ....
    --------------------

    Hi PezGal, thanks for sharing this. I originally though it was the chemo, but now I'm thinking it may be the anti-nausea medicine too. Oy. Who knows. Probably both.

    Goodluck today stotamom and Twirp!


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