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

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Comments

  • mara51506
    mara51506 Posts: 7,161
    edited June 29

    Mel, been on Herceptin 10 years. It is not as bad as regular systemic chemo since it targets the protein only. It will make her very fatigued, regular bed time and sleep helps a lot. She might feel nausea or have some loose stools. Those can be controlled with digestive enzymes and one loperimide or Immodium with every meal. It would allow her to eat whatever she feels like and guards against loose stools. One digestive enzyme with every meal and one immodium as well will help a lot. I do take them all the time now so digestive issues are very rare for me and I eat a lot of greens, beans and stuff that could set me off. Only note, I did get Herceptin and Pertuzumab (Perjeta) at the same time for a while, it did give me uncontrollable bowel issues so be on the lookout for that if that gets suggested. I had to stop taking the Perjeta and when back on Herceptin, the issue stopped.

  • illimae
    illimae Posts: 5,915

    Micmel, Herceptin and Perjeta were super easy for me and I only recall slow hair regrowth, minor skin issues (rash, sensitivity) and fatigue. I’d go back to that in a heartbeat, if not for the brain mets.

  • elainetherese
    elainetherese Posts: 1,640

    Micmel,

    Herceptin was not a problem at all for me. One important thing is for your daughter's MO to monitor her heart. Herceptin can reduce heart function, and if it does, her MO should discontinue treatment at that point. Best wishes for her continued recovery.

  • mara51506
    mara51506 Posts: 7,161
    edited June 30

    Yes, Herceptin has potential to be cardiotoxic but daughter will have regular Echo sessions, before and during treatment. If heart is affected, she can come off for a temporary period and be put back on once heart has resumed regular function. This is part of treatment with Herceptin but good to keep up with MO.

  • cookie54
    cookie54 Posts: 1,220

    @mara51506 Your cheese dish sounds delicious, glad you liked it!

    @micmel Thanks for the update always thinking of you. Sorry to hear Gabby is having a rough time. Cancer stinks big time and someone as young as Gabby should not have to deal with it! Sending strength and hugs for you both. ❌⭕️

  • mara51506
    mara51506 Posts: 7,161

    Got up earlier today which is good, got some stuff purchased for groceries, mostly canned stuff among other things, more cheese etc. Lots of ramen too, they are good building blocks for meals. Shredded cheese fried in the pan can be used as a pizza with stuff put on top as well, lower carb option. Will post later on meals if I remember. Pizza is in the grocery order also which would be good. A ton of stuff is coming, most pantry stable and a little bit of frozen. Got some chicken wieners as well, cheap and easy to boil, chop and have with beans.

    Washing up the new clothes, not sure about the skorts as I generally do not wear stuff like that, may become pajama type things. Picked up two more pairs of yoga capris, I enjoy the stretch. I have two flowy shirts as well, think they would be better with yoga capris, who knows.

    The grocery order coming at 2pm, since I ordered yesterday, only paid half the amount. I figure the amount I pay for delivery is the same cost as two bus tickets or Paratransit which is still inexpensive but I can get a lot more stuff from delivery since shopping carts are prohibited from the Paratransit vehicle. Oh well.

    Nothing else on the agenda today, hope everyone has a good day and in pockets for all. I will post on meals once eaten vs taking too much time planning.

  • chicagoan
    chicagoan Posts: 1,383

    Happy Canada Day to Mara and our other Canadians! Hope you have an enjoyable day doing whatever you wish to celebrate your country.

  • goldensrbest
    goldensrbest Posts: 824

    sf-cakes - it’s always bullshit with this damn disease. Hope you enjoy your self-kindness. HUGS!

    Mara - Happy Canada Day to you and those north of our border!

    I’ve had 2 sessions of OT. The therapist specializes in post breast surgeries and lymphedema treatment. She does a lot of massage over my surgical site to break up scar tissue and has me do exercises to help stretch the muscles in the surgical area. I go 2x a week for 4 weeks. I continue the exercises at home along with massage at bed time.

    Here for pocket duty for those in need.

  • cookie54
    cookie54 Posts: 1,220

    Mara Happy Canada Day, hope it was a good one for all!

    sf-cakes Hope you enjoyed your coastal drive and lunch. This is all a great big heavy bag of crap that we all carry around. Of course we all understand and wrap you in a big comforting hug.

    goldens Sounds like OT is going well and I hope all the massaging helps improve your scar tissue.

    Waving hi to all in the room and wishing you all a restful evening

  • mara51506
    mara51506 Posts: 7,161

    Thank you all for the Canada day wishes, I ordered pizza to celebrate.

    I am a uniboob, right breast removed left is still here. I hardly notice and have no worry that others will see it. Prosthetics were worn in the beginning but once they wore out, stopped using them. I do tend toward loose shirts anyway with yoga pants so it hardly seems to matter.

    Slept alright, supposed to be more hot but it is summer so no bother about that. Laundry, I might pull out the wee washers, no idea why but just feel like it. Drain is wonderful, socks catch anything coming out and stopped using more than one floating lint filter, the cover works well too. Chores are in order and am playing mobile games in order to earn money to buy more beans on

    Another day of plannng what to eat for meals. Need to work through eggs, need to find beans opened the other day, they have disappeared elsewhere in the fridge. I look to keeping bigger boxes and section off the fridge as well into what food I have. The other day as I may have mentioned, I ate a pizza over the course of the day, that was from the Walmart order. I do like the Mr Noodles meals forming a meal base and adding what I want to on top. I also have chicken dogs that can be chopped into meals as well, seasoned as I wish too.

    I wound up eating a ton of greens, used a southwest seasoning, corn and taco strips on it and used up the ranch that came with it. I did take two immodium as it was a giant bowl of greens and I do not believe

    While I do like the shirts I bought the other day, am not liking the skorts. I am large boned and hippy and feel the style makes me look large, a flowy shirt with yoga pants is a better look, got two more pairs of yoga capris coming. I also overestimated my size. I will use the skorts as pajama bottoms I think

  • mara51506
    mara51506 Posts: 7,161
    edited July 3

    I need a board break for a while. I will still read but cannot maintain posts and make them interesting to myself. If anyone asks what I made food wise, I can answer but for now, reading is all I can do.

    I am always in pockets and always hoping for good days.

  • goldensrbest
    goldensrbest Posts: 824

    Mara - you have done such an impressive job keeping things flowing here🎉🎉. You deserve a break. There’s the rest of us here to continue the mission.

    Here for pocket duty for those in need. Gentle hugs to all. Happy 4th of July. Stay safe and cool.

  • chicagoan
    chicagoan Posts: 1,383

    Mara-Totally understandable. Take whatever break you need.

    Today I wound up having a good day. I had lunch to celebrate the birthday of a 91 y/o acquaintance. I really didn't want to go since I have work later and it is extremely hot here. But despite my bad attitude, I wound up having a marvelous time. Now I'm relaxing a bit before I head off to work. My right hip is still really bothering me so it's very challenging to walk. I'm going to try more acupuncture next week and keep at the PT.

  • irishlove
    irishlove Posts: 698
    edited July 4

    @mara51506 Gosh I was thinking you really should keep a cooking journal and self-publish it. It's great for single folks, or quick meals on the spot or even how to use products in your pantry or fridge. I really liked the big mac idea. Food is so terribly expensive and your ideas make sense and sound very scrumptous. Gonna miss you, but if you need that break, enjoy the down time. Just don't stay away too long.

    @micmel Oh I'm so relieved to hear that Gabby had her Mom to take good care of her. She's just so young to deal with this sh*t. I read your line where you mentioned that she is so strong, sure she gets that from her Mama. I hope her tx is gentle and she sails thru it all as smoothly as possible. Sending love and prayers to both of you and your families, too.

    @illimae Oh don't you just find stable scans wonderful. Hope that plumbing gets done and parties ensue.

    Hi all, my brain is full of inflammation and devoid of everything else. Just getting by here. June 26 pet scan-ct showed stable, so hurray. Was one sketchy area speaking of "patchy hypermetabolism in left occipital lobe without discrete CT correlate. No corresponding abnormality on prior MR brain. This may be artifactual, however, a contrast-enhanced MRI of the brain could be obtained to exclude underlying lesion". I told the MO only artifact I have is my almost 80 year old husband and I am not concerned about this since 1. I have MS 2. Always have inflammation going on 3. There are inactive lesions of MS in brain. 4. I have an inactive cancerous lesion in the left occipital bone. Perhaps this is the culprit. Frankly, I am not putting any stock in this finding and I couldn't wait to leave his office happy as a lark.

    Different subject, looking for input. Has anyone done the 3 month Xgeva shot versus monthly. My copay is $600 per injection , and that's just not affordable monthly. I checked for efficacy and it doesn't appear in the one study to be a problem, but that was all in hind sight. MO didn't seem happy about my decision but it is what it is. Not sure if Xgeva falls under the $2000 maximum payout benefit or not. Any comments appreciated. Today is our 46th wedding anniversary. We were broke and figured the fireworks would be a wonderful end of a perfect garden wedding. He gets the award (if you know what I mean).

    Happy 4th everyone and hold Buster's ears closed if he doesn't like that booming noise. Crank up the music. That's what we have to do for our poor girls. In pockets for all your needs, scans and all.

    Laurel

  • chicagoan
    chicagoan Posts: 1,383

    @irishlove I did monthly Xgeva in the beginning-maybe for 2 years b/c I had so many bone mets. Then I have been on an every three month schedule for the past 7 years. It was my initiative and my oncologist agreed to it. The cost is one factor, also dislike monthly medical appointments and worried about the long-term effects of monthly Xgeva. So far, all has been well.

    Happy Anniversary!!!

  • goldensrbest
    goldensrbest Posts: 824

    Irishlove - Happy Anniversary! My original oncologist started me on Xgeva every 3 months. I continued at that rate for a couple years, until I developed avascular necrosis of my hip, which is an extremely rare side effect. No more Xgeva for me. I also believe the $2000 max for drugs is a result of all medications combined.

  • eleanora
    eleanora Posts: 472

    @chicagoan

    I will have been on monthly Xgeva for the past 3 years as I too have extensive bone mets. I have also read recent studies of results in real life showing no difference in efficacy whether the schedule was 4 weeks, 8 weeks or 12 weeks. In October I will move to the 8 week schedule with my MO's endorsement. She was actually willing for me to go to every 12 weeks, but since I have no Se's or cost, I decided to take a smaller step. Really glad to hear that the reduced schedule has worked for you.

    @irishlove

    I don't know if the cost of Xgeva would come under the $2000/year prescription cost, as Medicare Part B and my Medicare Supplement Plan cover the full amount and have for the past 3 years. Congratulations on the good scan results and Happy Anniversary!

    Eleanora

  • candy-678
    candy-678 Posts: 4,268

    Commenting on the Xgeva dosing—- I did monthly Xgeva at the beginning (2017, wow, so long ago!). I was on Xgeva monthly for the first year or 2 (I don't remember which, LOL). Since then, I have been on 3-month Xgeva. I have been on Traditional Medicare for the last 4 years and it is covered under Medicare Part B, since it is an injection given in the doctor's office. Part D (prescription drug plan) is where you get your meds at the pharmacy, and that is the $2,000/year max cost.

  • mara51506
    mara51506 Posts: 7,161

    @intolight Thank you for saying that, I will make myself read and keep posting.

    Going to be HOT today and the next couple of days feeling into the 100s. Way to hot for me. My house is comfortable couple of fans in living room, using split AC as a fan mostly, occasionally put on the AC portion with a turbo speed. I also have a big fan blowing AC air from the bedroom.

    Got some laundry going on, need a redo of the new clothes, left them in the spinner and they do not smell so good. Thinking doing a new load instead and put the skorts on as pajama bottoms. Need to wash up new yoga pants. Will not dry those but could take my old heated tent dryer rack to dry those up without worrying about shrinking and then tumble with no heat for softness. I still have the broken dryer as another side table in my room. It was wrecked when the exhaust hose got plugged up but it still tumbles, I will see.

    Thinking of making 2 eggs with corn bread mix , not for the actual bread BUT as a boost to the eggs to keep me full and use the magic bullet to whip everything up, heat around 4 mins, 700W microwaves do take longer. After microwaving, put some of the egg and bean mix in the chopper with shredded cheese, add garlic and butter to a heated fry pan, stir around the egg, bean and cheese bits from the chopper. The chopping of the eggs and bean mix that was heated gives me a more ground beef sort of texture and the cheese gives nice taste, leaving them in the garlic is good. I will post later on what I find out. Decided that I will not do any recipe requiring ramen to be used raw like what was shown, I tasted a bit of the broken ramen and thought it was gross. The ramen pizza could work since it is already prepared and just requires cheese to hold it together and put what ever I want on the top. At this point, I am wondering if chopping up an english muffin, putting in a pan to bake it with melted butter drizzled over would turn it into a nice snack to have with peanut butter in a bowl. My english muffins are dry but not moldy, would be better to used a broken up muffin vs a whole flaky one. I will see.

    I hope everyone had a good 4th and in pockets for all who need me.

  • mara51506
    mara51506 Posts: 7,161
    edited July 5

    @illimae, Were you affected by the flooding in Texas where you are? I do hope you are safe.

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