My Husband, My Life, My Love, My Family, My Cancer

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  • candy-678
    candy-678 Member Posts: 4,176

    Mara- I am no nutrition expert by any means, but maybe the amount of protein you are consuming. ?? Doesn't protein fill one up and stick with you? Maybe that is the reason you do not want to eat the same portions you used to. Just a thought.

  • livingivlife
    livingivlife Member Posts: 454

    Hello to all !

    sunshine- great news!

    Mae- what a beautiful picture! I can't imagine using tents before but I'm not a camper at all.

    Mara- it is unusual but I think most of us go through a period where we just don't feel hungry. You pack alot of protein,fiber and good nutrients in all your food choices

    Speaking of eating "good choices " I have made a decision to start eating healthier. When I hear of you and Mae choosing a different diet I have to change drastically! So yesterday I went to the grocery store and picked up fresh vegetables and fruits and spinach etc. Then last night my DH took me out to dinner for my birthday but I had salmon with quinoa and vegetables so that was ok. Yesterday I also managed to walk 4 km on a beautiful trail. At least it is a start!

    For me The Shining over Jaws any day. I love Stephen King! When speaking of Christmas commercials and movies so soon I love watching cooking competitions on TV. Sunday night they finished the Halloween cooking shows and on Monday I started watching the Christmas cooking competitions. My husband just shook his head. When I told him I wanted to put the Christmas lights out (Just kidding) he just gave me a big NO NO look!

    Mel - good luck at the doctors today


  • sunshine99
    sunshine99 Member Posts: 2,723

    Mara, I hope everything is OK. I know it's concerning when something changes, including our appetites. I know when I was so sick a couple of years ago, I couldn't eat. No nausea, just no appetite (that NEVER happens to me!) and it took me two days to eat half a piece of toast! Turns out I had pneumonia. I hope your issue gets resolved soon.

    Mae, what a beautiful photo. I love being above the clouds and looking down on that sea of white. Makes me think of batting for quilts.

  • mara51506
    mara51506 Member Posts: 6,516

    Beutiful.

  • sondraf
    sondraf Member Posts: 1,693

    US ladies - I need to get a hold (in the next two weeks) of the medical/surgical notes from my 1999 reduction surgery. While I've emailed my parents to see if they have anything floating around, if they don't, is the hospital likely to have these and would that be the best first stop? Any sense of speed on a request like this? Maybe Im so used to the donkey speed of the NHS Ive forgotten that things can move a little faster in the US.

    Mae - your cabin views always look like fairytales!

    Mara - it could also be the seasons changing. All of a sudden for no reason at all I want to eat all the time (but stop myself) as the weather is colder and dark. Youve been doing a lot of exercise and some amazing dietary work, I wouldnt be surprised if your system has potentially adjusted to this state and is maybe becoming more efficient, or used to the caloric density/amount. Perhaps keep an eye on it for a few weeks

    John Carpenter horror movies for the win! Though I rewatched Carrie at the weekend and marveled as usual at William Katt's luscious locks.

  • illimae
    illimae Member Posts: 5,739

    Sondra, Definitely try the hospital. I would email the request and follow up the next day with a phone call (not to rush but to make sure the request is received and eyes are on it) and I’m both explain the urgency and thank them in advance for any help they can provide. I find those moved by kindness usually take on the task personally and ensure that it’s handled. My reports are available online but disks/CD’s take up to a week for mailing or pick up. Of course MDA has a huge staff to accomplish this.

  • micmel
    micmel Member Posts: 10,057

    I completely agree with Mae.

  • elderberry
    elderberry Member Posts: 1,068

    mara: Hi. Popping in to see what's up with your food issues. I really need my protein. I would make a terrible vegan. I need my protein to taste like (sorry vegans and vegetarians) "connective tissue" Not every day and I try not to think of an animal that gave its life to feed me. I like Beyond Meat burgers and I am happy with beans......but sometimes there is nothing like a piece of beef.

    Lovely pic, Mae.

    Brain fog --- I don't know whether is is better to think I am getting old or it is a harbinger of something else.

  • mara51506
    mara51506 Member Posts: 6,516

    Elderberry, Sondra and Sunshine, I think you are right about the density of the food. I was told by the doctor not to worry unless I cannot function or become exhausted. I have decided to keep up with the protein and just accept that I may not be able to eat the whole meal. My weight is largely stable with a 0.4 gain but that is not enough to make me worry. Besides the walking, will look into some weight workouts as well as I know that will help a lot. I was able to eat a whole harveys meal after my cancer clinic appointments, was there 7 hours and was starving. Going to keep up with the beans and things for sure.

  • mara51506
    mara51506 Member Posts: 6,516

    Elderberry, I am not actually vegan. The beefless ground just has so much nutrition packed into just a few calories. I still have frozen burgers and chicken burgers that I use too. I can understand what you mean about the texture of a meat burger for sure.


  • micmel
    micmel Member Posts: 10,057

    My mouth has been bothering me a lot. I saw the doc and she said one month break in treatment. Hopefully it will heal enough to hold its own. But I fear this is just how it is. Or even if this is the sign that the meds have stopped working. So I'm a bit uneasy. They didn't seem worried. But I worry enough for them all.

  • mara51506
    mara51506 Member Posts: 6,516

    Are you getting cankers or is it nerve pain?

  • sunshine99
    sunshine99 Member Posts: 2,723

    mel, I'm sorry. Mouth sores are no fun. If it is like canker sores, have you tried the Orajel Mouth Sore rinse? I use it every morning and it seems to have helped. I think it has hydrogen peroxide in it, because it kind of foams up around my teeth.

    I noticed the sores when I started the Ibrance. They were definitely like canker sores and they took the fun out of eating or drinking.

    I hope yours get resolved very soon!

    Carol

  • kittykat9876
    kittykat9876 Member Posts: 420

    Hi Mel, whenever I get mouth sores I get a paste called Kenalog from the pharmacy, it works really well. I checked, it is sold up there.

  • livingivlife
    livingivlife Member Posts: 454

    Mel- I have also had mouth sores and used the Orajel treatment which helped. Did the doctor recommend anything other than stopping the treatment for a month?

    Today I am so very very tired. Aches and pain all over. Got up this morning and 2 hours later headed back to bed. Since I have changed my diet I'm thinking it may be sugar withdrawal. Is that possible?

  • micmel
    micmel Member Posts: 10,057

    just feels like I ate a pizza that was entirely to hot and it burnt my mouth.

  • mara51506
    mara51506 Member Posts: 6,516

    If you can stand it, making a mouth rinse of baking soda and salt with warm water would help a lot. I usually use a teaspoon of both the baking soda and salt and just swish around the mouth and gargle, followed by a rinse. The baking soda and salt will soothe anything sore in the mouth if done several times a day. If there are ulcers, take about a teaspoon of baking soda, wet your finger and put some baking soda on the finger. Hold your finger on the ulcer. It will ease the inflammation and promote healing. Same goes for the mouth rinse. I also dry off the spot and apply a thin layer of vaseline to act as a barrier, really good for overnight and quick healing.

  • booboo1
    booboo1 Member Posts: 1,196

    Mara,

    You should have been a doctor. You would have been a good one too. Happy

  • goldensrbest
    goldensrbest Member Posts: 733

    Mara - Laurie is right - you would have been a great doctor! All the different gifts we each bring to Mel’s living room🥰🥰

  • illimae
    illimae Member Posts: 5,739

    So, DH and I finally made it to the movie and it was fun, we shared a giant Bavarian pretzel and popcorn and had the theater all to ourselves.

    image

  • iwrite
    iwrite Member Posts: 746

    You are a brave woman,Illimae! I've still never seen Jaws, exorcist, or any of the Halloween, nightmare, or Chuckie films. National Geographic all the way!

    Have a great weekend folks! I'm taking a new friend up into the mountains to have lunch in Salida, CO tomorrow. Forecast is sunshine and 70 degrees. A perfect mountain day!

    Yeah, mouth sores :(. They lasted for a full week last month.) Peroxide swishing finally helped but it was miserable. They start again in a week…oh well

  • micmel
    micmel Member Posts: 10,057

    Mae~ that looks like a lot of fun. I love Halloween movies for sure. Jaws Anytime really. Love how you. Do lots of stuff with DH.

    My DH is in pumpkin mode, puréed like six kinds for pies soups breads and custards. The kitchen is soon to smell delightful.

    Mara~ thank you for your suggestions for my mouth. The sores run down my throat and the stinging in my mouth just won’t quit. But I’m trying everything I can. My doctor broke out the liquid morphine. I guess we will see.

    Thanks to everyone’s suggestions and thoughts. It is appreciated. I’m just annoyed. It’s always a new side effect. I just want to take my medicine and live my life, as if I don’t have cancer. I can’t believe that thanksgiving is this month. I guess I blinked.

  • ShetlandPony
    ShetlandPony Member Posts: 3,063

    One more remedy to ask about, Mel, is dexamethasone mouth rinse. You swish and spit. This is now standard of care to prevent mouth sores from afinitor. It is a steroid, an anti-inflammatory, and stomatitis is inflammation.

  • mara51506
    mara51506 Member Posts: 6,516

    Goldens and Laurie, I used to get a lot of cankers and the online research pointed me in the baking soda and salt. I also put baking soda paste on a zit as well on the rare occasion I get one.

    Mel, I do hope the sores clear up soon for you. I agree with Shetland if you need heavier duty stuff to get rid of the issue now but in future, once your mouth has healed, consider the baking soda and salt as a preventative measure.

  • Kikomoon
    Kikomoon Member Posts: 358

    Mel - hope your mouth feels better soon 💐

    Mae - awesome having the whole theater to yourself! I am going to start checking the seating chart mid day to try and get an empty one soon. I want some chips and queso and a beer at the movies, haven’t had it in almost two years!!

    Hope everyone has a good weekend. We will just be getting ready for our upcoming desert road trip, maybe will watch a movie and I will also do alot of work-work as a peace offering since my coworkers are ok with me going on atrip. Hopefully work slows down with thanksgiving coming up.

  • booboo1
    booboo1 Member Posts: 1,196

    I had my PET scan yesterday, and MO and I will discuss at next visit next week. I tried to read it, and from the little I could understand, it appears that the treatment I’m on is working. I did not expect to see any words showing progress with the Cytoxan / Methotrexate combo, but I feel encouraged by what I saw on the report. So fingers crossed that I am correct. I am curious to hear what my MO will say about my stomach tumor. It’s still there, but does seem a bit smaller than before treatment.

    Thank you for being in my pocket yesterday. It went so fast, I could not believe it when the tech said “All done.” I am so grateful to all of you here. What wonderful support we get in Mel’s living room.


  • candy-678
    candy-678 Member Posts: 4,176

    Booboo- Hoping that your MO agrees with your understanding of the PET results and things are improving.

    Mae- Gosh it has been YEARS since I have been to a movie. Way before Covid. How did you get the theater to yourself? Just luck or could a person plan that?

    Mel- Wishing you would find relief from the mouth sores. Hope you can feel better soon.

    Well my nausea is a "smidge" better with the lowered dose of Lynparza (from 600mg a day down to 500mg a day). I do not have the increased saliva anymore. But the nausea still comes and goes. I was feeling pretty good Thursday and fixed a pizza for supper. After eating I felt like I ate a greasy brick and felt sick all night. And on Friday I was ordering some groceries online for curbside pickup and just felt nauseated thinking about my grocery list. Wish I could feel better.

    Also, this weekend is supposed to be sunny and in the 60's. The leaves are at their peak in colors. My texting buddy wanted to know if I wanted to take a drive. I said no. Even before cancer I was not a "go for a drive" girl. I need to have a destination planned. Not just driving around. And we cannot go out to eat-- Covid risks. And I still feel tummy iffy for eating also. So, really, the drive sounds boring.

    I did talk to a church friend this week and they are planning a retirement open house for our Pastor. He is retiring from the ministry after 60 some years in the ministry. THAT sounds fun. The planning and the party. But, alas, Covid risk. That would be indoors with people from all over. No masks. Cake and punch-- eating without mask, even if you wore one. So, I do not want to take that chance.

    Sigh.....


  • illimae
    illimae Member Posts: 5,739

    Candy, it was luck and planning, it’s a movie that would be more popular before Halloween, not so much after. Also, going to an early afternoon weekday showing cuts out most of the primary audience who’d likely be in school or working at the time. Luckily, no one else had the same plan yesterday.

  • livingivlife
    livingivlife Member Posts: 454

    Booboo- hoping PET scans and tumor show improved results

    Candy- feeling nauseous all the time must be so hard. I do hope it dissipates soon. I'm not a drive person either. My husband will say to go for a drive but why since I know everywhere around here.

    Mae- what an experience for an afternoon movie. I don't think our movie theater is open in the afternoon!

    Mel- have you tried any solutions for your mouth sores. Have stopping treatment helped at all?

    Today I have a nice day to myself. Sometimes I just love being on my own. Took the dog out for short walk and did some shopping on Amazon. DH has gone to the races, literally. He goes to the horse races in town which he knows most of the owners and drivers.

    I'm hoping DH doesn't mean "designated " although sometimes I wish I could designate him 😕 I do love him though. He tries to help bless him but he is hard of hearing. I could be in the next room calling him or standing next to him talking and he doesn't hear. He had his hearing checked but he is stubborn and won't buy the hearing aids! I told him if anything happens to me where he can't hear then I'll die alone. I'm kidding with him but not really.

  • mara51506
    mara51506 Member Posts: 6,516

    I actually enjoy having a drive when my older brother takes me shopping, I just ask to go to another part of the city I don't typically get and then after, we head for my grocery store, sometimes my niece or sister in law have to visit another store. God forbid it be a place with yarn in it, my sister in law could live there forever. I will say, her crochets are lovely and I love the blanket she made me as well.

    Candy, I do hope you get to feeling better soon, agree with above posters that the persistent nausea is enough to bring anyone down for sure You are better than me for sticking to a treatment that makes you feel so bad, I would have given up by now so kudos to your strength to keep taking it.