My Husband, My Life, My Love, My Family, My Cancer
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@candy-678 - I too am so glad that you updated us. Like @chicagoan , I've been wondering how you are doing. Re the current treatment, I was on Verzenio for about 2.5 years, and I didn't have too much gastrointestinal trouble. I've always attributed it to the fact that I eat plain Greek yogurt everyday, and also have a serving of fresh (not canned on the shelf) refrigerated sauerkraut. Lots of probiotics between those two things. The rare trouble I did have usually passed quickly, and maybe 2 or 3 time I used one immodium (two start to constipate me, and it lasts for days). Just some thoughts on what might help. If it was me, I'd try a few things and give it some time, to see if things don't get better. Verzenio can give some people a good long run. I've got fingers crossed 🤞that you find a solution and get a really long, long time with this new regimen. Sending a hug too.
@chicagoan - That sounds so, so nice to be up there in Wisconsin with the calm and peace. I know what you mean about the contrast between where you live and where you are now. I live in a business district where it's loud and noisy, but I can go just a few blocks over to a residential area and while there aren't woods and lakes, there are yards and lots of plants, big old trees, and urban wildlife, and it's extremely peaceful and I get that feeling that you could hear a pin drop, and all you hear is things like the wind in the trees, and the birds, etc. Again, not a wild area, but such a peaceful, happy, and welcome contrast - great for both physical and mental health. I was in Wisconsin once way back in the mid 70's and I was really taken by the beauty of what I saw. You are so, so lucky! Have a wonderful time up there.
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My last two posts have missed the mark so trying again, should I lose this one, will type on the stick notes in laptop and copy and paste it.
Laundry on go, moving on to floors. Garbage and recycle collection tomorrow, will start taking each out, 2 bags per hour starting from 4pm. Slept OK last night between bathroom breaks. Not sure re food. Might start with one of my billions of burritos, the Tina's brand is good. Got one of those boxes of small bags of chips. My plan, to use part of the bags to level up my flavours along with the popcorn seasonings I have.
Todays first meal will be a burrito, going to put lentils and cheese on the side. Heat for around 3 min 30 seconds, I will enjoy.
I also have gifted myself a movie trip on Friday to see Spiderman Brand New Day. Been watching those movies back from when Tobey Maguire was the featured actor to today's offerings. I am also allowing myself popcorn at the theatre. Yeah, it is pricey but there are very few movies I would do that for. Got the same seat I always choose and can book the Paratransit around assuming lots of ads and trailers before the movie. Got a semi private seat as well, has its' own table.
I do hope people feeling sick are getting better, in pockets for everyone and have a good day.
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@mara51506 - I think a treat/trip to the movies and getting some popcorn is wonderful! What a perfect thing to do for yourself. Enjoy it immensely!
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@mara51506 Glad you are going to treat yourself to a trip to the movies! Sounds like a lot of fun.
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Well, broke it up but in 3 trips, removed 5 bags of garbage from my outdoor bin. The last bag that went out was kind of heavy so leaned down a bit and put the bag down step by step, no tossing or dirty litter would have got loose in the apartment building. Easier to chunk out the trips a bit at a time. No trouble or feelings of loss of balance either so that is good.
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I slept well last night. Getting the right setting on the window AC, I do not like to freeze my butt off but neither do I like to feel too warm. Numbers go from 1 to 7, 7 being coldest. I chose 4 for temp setting. Would be easier if digital but oh well. AC in the window is a banger.
I did another shop but spent full amount allowed 50 bucks, lots of mini pot pies, can use those with anything, more garlic spread, it is milder in flavour. 2 boxes of Mexican rice and Oh Henry chocolate bars.
First meal was really good. I had split up a box of the mexican rice earlier, took 1/3 cup, 1/3 cup water and put in nacho seasoning and canadian cheddar flavour seasoning together. Did the usual bring to boil, stir a bit then turn off burner cover with a lid. Took the magic bullet tube, add 1/3 cup beans and 1/3cup lentils, 1/3 cup beefless ground and some shredded cheese. Mashed up everything and put lid on the tube and shook it up. Put the rice and contents of the tube, microwaved 3 mins. When came out of oven, added more cheesy seasoning and a dollop of mayonnaise to bind. I must confess it was DELICIOUS. Came out creamy. I almost took a picture of it but forgot.
I do hope everyone is having a good day, in pockets for all as well.
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@irishlove Sorry to hear DH is having increases in his numbers and treatment may be in his near future. You both have so much going on I hate to hear you have to deal with anything else! Hugs
@chicagoan Enjoy your peaceful getaway, sounds fabulous!
@candy-678 Ugh sorry your dealing with GI issues, definitely not fun. I would run it by MO, why suffer..maybe she will have some good suggestions beside the obvious Imodium. Hope you get relief soon, hugs.
@threetree Glad you had a little break from side effects. Hope your body got the healing it needed and happy to hear you got some walking in!
@mara51506 Happy you planned a movie trip, it's nice to have something fun to look forward to. Enjoy!
@shanagirl Prayers up for good results from your scans. Summer shore traffic can be horrendous in NJ , glad you were able to avoid it. Hugs
Was a beautiful weather weekend here, back to humidity now. Grateful to have the break..yes Looking forward to September too!
In all pockets for scans, appointments and all needs this week.♥️
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@cookie54 I did get the paratransit booked, probably gave myself more time than is needed but looking forward to it. Popcorn is definitely on that agenda too. Going to be pricey but I do not mind.
Nothing on agenda today doing some laundry, got floors as always and have meals to think about.
First meal,probably some rice, still got a box of mexican rice I put into a container I am working on. This would be the third helping. Been using 1/4 to 1/3 of a cup, rest stays in container. Still got the seasoning as well, making it with beefless ground, cheese, lentils and beans. All of those are 1/4 to 1/3 cup as well. Make the rice first then mash beans, add lentils beefless ground and cheese, mix those up, add the rice and put bowl in microwave for 3 mins. Delicious usually. Post if it is. I do have small bags of chips purchased from amazon. Variety pack, one flavour I really do not like all dressed, think it is the vinegar part of the flavour so will chop up in my spice grinder and find a flavour to get rid of the overwhelming vinegar taste. I will look that up.
EDIT My meal was delicious. Included 1/3 cup beans, beefless ground and cheese. I also prepared 1/3 cup of mexican rice first, put in Canadian Cheddar popcorn seasoning, some sour cream and onion and the seasoning made up of all dressed and sugar seasoning that I put through the spice grinder. Once the rice done, got a bowl put beans, beefless ground and cheese, mixed up a bit by hand. I then put the rice on top, threw in some garlic spread to let that melt down. 5 mins high in microwave. OMG it did taste really good. I did take digestive enzyme and 2 loperimide because I knew that much fat would cause digestive issues. I really did enjoy it.
EDIT I did look it up to remove some of the tang of the vinegar, turns out to be sugar which lasts forever and I still have some of mine so can try that out today. I did try that out, it cut out some of the tang for sure but also decided to add more stuff to the mix and shook up the container. It did taste good.
I hope all have a great day, will post final meals as usual. I am in pockets for everyone.
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Good Morning all you lovlies🥰
@cookie54 Yes it was great to go up there on Sunday little traffic with drivers returning home from the shore but thins out after a few minutes near the turnpike. ao we were out of the CT appointment because the hospital is so empty on Sunday.; within an hour we were having lunch at an old favorite landmark restaurunt from when we used to take the kids out for an affordable dinner back in the 80’s. the place is still the same and he food is still the same, and we always order the open sliced steak…..thi kidswould always order mozzarella sticks and ministrone soup, and play wih the Juke box, which is still there😊. then driving home was relaxing and we got home in an hour 15 min. no traffic…. I got the results of the CT Yesterday morning which still showed a some residual infectious/inflammation slowly decreasing.
IMPRESSION:
- Overall stable to slightly decreased pulmonary peribronchovascular and tree-in-bud nodularity, likely infectious/inflammatory in etiology.
- Left upper lobe 0.3 cm pulmonary nodule, new.
- Recommend follow-up per oncologic protocol.
so I guess I’m slowly recovering. have a great day Jersey😊
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@shanagirl Oh it sounds like you made a nice day out of scan day. I love going to nostalgic places that have wonderful family memories. Ok I guess we'll take stable with slight decrease certainly better than an increase. Continued healing thoughts your way.
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@shanagirl Yay for the stable and slight decrease. Glad you were able to enjoy a nice lunch after the scans. Going out for a good lunch afterwards is one thing we always do.
Today was chemo day. After 2 1/2 hours, the nurse told me they lost my labs and they would have to be retaken. What? This is all done inside the hospital. The infusion center takes my blood and sends it directly to the lab for analysis. Then it took over an hour for the second stat lab results to be posted so I could start the pre-meds. This is unusual for that hospital. My initial lab appointment was scheduled at 11:20 but the chemo was finally finished at 4:30. Very long day after a long day yesterday. Thankfully I have no appointments tomorrow then I see the oncologist on Thursday. No one tells you how managing cancer takes over your life…
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Hello ladies. DH started his treatment yesterday. We had an early appt for labs at Moffit and then upstairs for his infusion. Since it was the first treatment they wait an hour between medications to make sure nothing serious happens. Got him home put some soup in instapot and headed back out for my faslodex injections. I think I will try to not do this all on the same day in the future. Thank God I made it but it’s too much to be in two cancer treatment places in one day. So far he doesn’t have any serious se’s. Taking it easy today.
Mara I do t understand how you’re cooking/mixing all these ingredients. Sounds delicious.i think i always have the same trio of peppers onions garlic.
@shanagirl your results sounds like healing to me. That’s nice to go to a good restaurant after appointments. Nice to avoid traffic. We live close to Moffit and Florida cancer maybe 15-20 minutes.
@intolight lost labs!!!!!!! Unbelievable. Ugh.
@cookie54 we still have a lot of humidity. I went for a walk Sunday and I won’t run it again until I get the neck fan thing that @mara51506 recommended. I lot of people bike ride where I went and boy do they take care with ice neck rags and such. I think they have a breeze bc of their speed.
I hope all are good.Waving hello to Chicagoan candy Mel Threetree And everyone else that I have missed. Take care
Tanya
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Good early morning dear ones. @shanagirl I wonder if some of the issues with ourselves or loved ones is due to mosquito spraying? Not sure what they do in Jersey, but in the summertime or after bad storms they fly a cropduster type plane to spray. They do send out warnings, but sometimes we miss them. Tonight was one of those nights and we went inside quickly. DH is on augmentin and steroids. The MO left him off the hook on starting chemo. DH has next appt. in 4 months. Your such a wonderful story teller, I felt like I was at our favorite restaurant when kids were little. DH worked a lot of different shifts as an Officer for 37 years. So we would load up and meet at a restaurant that was like family to us. Thanks for taking me down memory lane. So happy to read stable or improved scans for you.
@chicagoan Beautiful Wisconsin, one of my best friends was born and raised there. I met many of her family members, and I have to say they are so friendly. They would visit Florida and bring perch fish down for a good ole fish fry. We just loved them and the hospitality. Noticed you mentioned possibly looking into a hospice in that area. Wherever you go, just know I care deeply about you.
@tanya_djamila Juggling two major illnesses with you and your DH is trying and overwhelming I'm sure at times. You are amazing. They didn't tell us that part with the sickness and health vows, but in my case I believe it has bought us closer these past few years. We listen better to each other and giggle a bit more.
@mara51506 Wishing you an enjoyable time at the movies and may the popcorn be buttery and a big lot. Now please tell me how on earth you can use chips without them becoming pulverized? I love your ideas, menu and success stories.
@intolight How awful that they could be so careless losing your blood and testing results. That day is definetly too long. Someone should have bought you a good hot meal and apologized. Once in awhile they call me back to the lab because my blood coagulates, or some such thing making it untestable. It's really a PITA!
@cookie54 Oh I hope their is more fall like weather coming your way soon. We had a severe thunderstorm yesterday that lasted hours. Afterwards the cooler temp. was such a welcome relief. Now tomorrow back to 96 for a high.
@candy-678 and @threetree I hope that your side effects settle down quickly. It would be grand to go out and about without having the worries. Please know I'm thinking about you and candy, I hope the new meds will go easier for you and squish those cancer cells out of existence.
Nothing major going on here. We sat outback with the dogs and listened to music. Had our own little 60's thing going on. Buddy sat by the pool with his nose sniffing the air. Minnie got out of bed to join us. She's still a bit down over losing her daughter, Pigeon. We miss her like crazy, too. The sunset was gorgeous as was the full moon visable over palm trees. We truly are blessed.
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I did sleep OK, no real agenda today as usual, nothing on tap until Friday and the movie. Usual laundry, floors and meals etc.
Thinking of food, when am I not I know. I am still working on the first box of mexican rice since been eating 1/4 to 1/3 cup daily. Next serving would be number 4. Rest of the meal is typically lentils and beans and everything. Will keep up with the beefless ground as well and cheese. I still am in love with the burritos.
Welp, wet jet no longer spraying, will need to spray floor with regular spray bottle for right now, charging batteries and will check spray holes, they may need unclogging.
Batteries charged and filled up the spray, not working again even after the poke. 2nd one in few months that stopped working. Debated for few minutes on steam cleaner, forget that. Keeping all wetjet and floor tool, can open the wetjet spray, put them in another spray bottle I have. No need to buy anymore stuff and no need. I still have the vileda but it leaks all over the place so use as a duster on the floor. My sock mop attached to the swiffer duster with elastic works better than the actual duster.
Getting an egg mcmuffin breakfast because I feel like it. Later will get something healthier to eat.
I do hope all have a good day, in pockets for all.
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@irishlove - What a nice update for us all. Thank you. Gee, once again, we are at opposite corners of the country with such different flora and fauna. I've never known anything like a pesticide spray plane going over after a storm, etc. That would be a two sided coin. Good to get rid of the bugs, but such danger to the people too. Glad you got inside. Also, I don't think we ever get over losing our pets. I sometimes still get emotional and even weepy thinking about pets I had in childhood and years ago, that have been gone a long, long time. I especially miss the 3 (two dogs and a cat) that were with me for virtually the whole time my kids were growing up. I haven't had any for a long time now, because I'm alone and I didn't want to leave a pet home alone all day while I was working, and now that I'm not working, I just don't know how long I might be here and don't want to leave an animal with no one. I can really empathize with your continued sadness about Pigeon. It sounds like you had a wonderful evening though with that cooler air and sunset. That moon over the palms sounds beautiful. (I would have loved to have joined your little 60's party!) Yes, we have all these ups and downs, trials and tribulations, but the beautiful evenings with music too. I agree that even through all these cancer troubles, pet losses, and more, we are still truly blessed in so many ways. Have a really good day - I think about you too.
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Hi everyone🥰
@tanya_djamila that’s a lot to deal with going to 2 cancer centers in one day for DH, then. yours. Maybe because it was his first treatment is why the took their time. I remember in 2009 when I had my first infusion chemo treatment with Adrimycin Cytoxin and Taxol , my oncologist had ordered a pre drip of Benedryl & Ativan. That made everything relaxing and dreamy,……. Now I just pop a Valium on he drive up to my onceologist for my treatment injections o Fasoldex and Xgeva, 😉
Oh my goodness, @mara51506 I get tired reading how busy you are eachday. the Batteries the spray, the meal planning . Your sock mop attached to the swiffer duster, and after all that getting an egg McMuffin breakfast!!🥞☺️. Gotta just love you girl🥰you are too funny💕😜
@threetree and @irishlove we don’t ave to deal with those spray pestcide planes here either at the Jersy shore, though it Can get really buggy with the mosquitos in the wetlands with those tall reeds that grow in some areas. Island Hts down here has a lot of swampy wet land grasses right in the middle of residential areas. I wouldn’t like to live there. I live right on the Barnegat Bay 2 houses away, no bugs just seagulls. the one thing I hate is the tiny ants tha live all over down her in the backyard and garden areas and under my flowerpots … and @irishloveI’m always seeing those little sand hills.😒
@candy-678 I saw that you checked in the other day and I wanted to let you know, I have been on Verzenio for almost 4 years. I didn’t go anywhere without taking Imodium, and my Onc always warned me it causes diarrhea., But-those days are over, though I’m not sure if it will start up again when my onc puts me back on it. I have been off the Verzenio since May 16 when I came down with that horrible bleeding bacterial Pneumonia.. My D H says it was awful the morning he called the ambulance because I was on he floor, passed out unconscious, with blood coming out of my nose and mouth, and I had no pulse and flatlined twice….. I’m still being treated for it. My pulmonologist just precribed 3 more steroid inhalers with9 refills after he viewed my CT scan this week…..Anyway @candy-678, I’m praying you’ll do well with the new treatment meds with little SE’s. Take Great Care Girl.
@cookie54 Thank you for keeping an eye out for me and everyone else here too💕
So anyway everyone, I’ going to say good night now. Today I was feeling so much one pain and I was weak and exhausted after coughing non stop all night long., this was the first time in a couple of weeks, so I was really miserable this morning. I’ve been in bed all day with my pugs, didn’t eat anything but jello. , So coming here chatting to you all made my spirits come up🌷🩵
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@shanagirl I actually do enjoy the mopping. Only trouble I have had over two wetjets is the spray function wears out quickly even with charged batteries and poking the holes to ensure it is not clogged. It is fine, mops are functional even if I use another spray bottle and spray ahead of myself. Not going to buy another, floor will still be clean.
I have laundry on the go, thinking about floors, cat corner of room. Must say since I did the entire emptying of box and new litter put in, I don't smell it so much. I am glad, doing every week now as well. Steel trowel also keeps box cleaner.
Food is eluding me this morning. Got a billion burritos to have so am thinking about possible burrito with rice, lentils and beans, no more than 1/3 cup of each, might put some cheese as well and heat up with a burrito, not sure about seasoning yet. I also found hashbrowns in crisper of fridge, did not have room in freezer. Later meal would be egg, lentils and beans, 1/3 cup each and some beefless ground with one mini pot pie. I got 3 packages of 6 last shop so lots of those to use. Microwave that stuff over a few miniutes.
EDIT Meal 1 Just over 1/4 cup of rice and lentils. Rice was premade with sour cream and onion, garlic and butter and a canadian cheese seasoning. No salt, boiled water and added rice, once boiling, turned off covered with a lid. Put rice in a bowl, tore up hashbrown, added lentils and shred cheese and burrito, heated 5 mins on high. It turned out delicious. Having a burrito tonight, simple and always tastes good to me.
I hope everyone had a good day so far and in pockets for all. Looking forward to the movie tomorrow as well.
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I also thought about making manwich centred meals as the manwich sause is fairly inexpensive and could have it with lentils, beans and beefless ground combos. Yummy.
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@mara51506 I have to say I love to hear you say i got an egg mcmuffin just because you felt like it! I definitely need a little bit more of that attitude sometimes I’m so critical of myself if I eat something that’s not as healthy. I need to enjoy it and not feel guilty about it. I probably won’t be on here in early tomorrow so enjoy the movie and popcorn!
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@cookie54 Enjoy what you eat. Unless you do it on a constant basis, I would not worry about it. I am sure a lot of what I have could be counted as unhealthy but I do think all the lentils and beans counteract some of that too I think. Tomorrow, plan to enjoy popcorn at the theatre and I always dump extra butter on it too. I also the same seat in the theatre too, like being near the back on edge. Seats have changed, semi private premiere seats as well. Not sure what those will be like. Last movie I went to was DeadPool and Wolverine.
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I have had some progression and will be starting Xeloda next week. I have followed your posts and I'm impressed by how you've handled it. You were so stunning in the pics of your daughter's wedding that I would never have guessed you were on treatment. I would welcome any tips/recommendations you can share. Particularly interested in whether you feel able to go to the beach and if that affects HFS, as I know you're a Jersey Girl too. I've spent at least part of every summer of my life down the shore and will be very sad to give that up.
Thanks,
Eleanora
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@mara51506 - Enjoy that trip to the movies tomorrow!
@eleanora - Oh, so very sorry to hear you'll be "riding the Xeloda wave" with some of us (I believe that was @cookie54 's term), but also glad to have you with us! @cookie54 is a great help, and I too have been amazed at how she's handled all of this. From my own perspective, I don't know how a trip to the beach in and of itself could be problematic, but others can weigh in for sure. Looking forward to seeing you over on the "All About Xeloda" thread. Hugs!
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Had a nice sleep. Movie is at 340pm, booked pickup at 230pm, if super early can sit around at my nearby burger joint but am OK with being earlier. I also pulled out my old foldable cane to bring, realized that I could not carry a cane and all the popcorn I plan to eat so can take the cane, fold up and stick in my purse. It works really well. I still prefer regular cane but have this as a backup..
Do chores before I go, leftover dishes need rinsing, they sat in there with detergent overnight, need to breakdown boxes from purchases made for cat stuff and my own stuff purchased.
Need peanut butter, got it off Amazon to arrive tomorrow, free delivery and same price as Walmart
Meals stay on the simpler side, using up rice, lentils and mash up beans. Beefless ground may be used up too with shredded cheese. Still enjoying the popcorn seasoning as well used as a main meal seasoning. I also still have the mexican rice on the go, would be the fourth meal it goes in, have to see. No real rush since they don't go bad. I
Got laundry going, only problem keeping machines in tub, easy to miss if stuff drops in tub, using a lysol disinfect and regular wash, remove the moldy smell from the laundry. Also have pants in laundry, washing in mesh bag so the legs don't get all stretched out, will spin as usual then hang in the bedroom to dry along with other load in machine, use extension cord so hanging dryer is plugged into kitchen power and regular dryer plugged into living room/bedroom power.
I will post meals as they come up. Most likely will be just one before I go out.
MEAL 1 Had a mix lentils, cheese and beefless ground, 1/3 cup of each, used hand and mixed up. Grabbed a burrito beef and bean dropped in bowl with lentils, cheese and beefless ground. Crumbled up small bag of Doritos, put cheese seasoning as well. Microwaved 5 mins since lots of stuff in there. Once done, put binding agent in which was mayo and parm mix but put some water in and shook up. It was not bad tasting, just a bit thin. Probably will skip that in future. Overall filling and really good.
I hope all have a good day and in pockets for all.
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@mara51506 Enjoy your special day out and the movie. You deserve it!
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Thank you @intolight !
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I went to PT yesterday for the second time after an absence of over a year. I had also stopped doing the original exercises and stretches I was given. Last week, I was given a new routine to do, and then yesterday we added to it a little bit. I woke up this morning with a really bad migraine type headache with nausea and light sensitivity, etc. After googling around it looks like exercising mid and upper back, along with shoulder muscles (as we did yesterday in the PT session) can do this, and the headache can last for awhile; maybe even a couple of days. I had a different but related problem last week after beginning this new round of PT (dizziness and balance issues walking home). I'm wondering if the Xeloda I'm taking now has anything to do with this, as I never had these problems before, doing PT while on Verzenio and fulvestrant. Bad morning with migraine type symptoms and lots of brain fog. Well, at least it's a beautiful day out there, here in the PNW, and that helps. I hope all of the rest of you have a really nice day and are looking forward to your week-ends. Such ups and downs we all have with this - sigh.
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In pockets for you @threetree for the symptoms to go away,
Movie really was awesome, highly recommend Spiderman Brand New Day. Audience actually clapped. Had to wait for about an hour for the Paratransit home, part of the time I started feeling light headed but managed to get over once picked up.
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@mara51506 - Thanks for the nice thoughts Mara, and so glad you really enjoyed the movie. I haven't been out to a movie theater in I don't know how long. Gives me something to think about maybe doing. Have a good one!
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My update for this week….
I called the pharmacist this last week and asked if she has seen others on this treatment adjust to the side effects- primarily the diarrhea. She said a person can "adjust" to a degree, but that diarrhea is a main side effect and just have to learn to "manage" it. I changed the timing of the imlunestrant to later in the day, and have seen the stomach issues move to the evenings versus mid-day. That is better. Home of an evening versus being out with day appointments.
Someone asked me if I can tell when the Big D is going to happen- - - some I guess are caught unaware and have to carry a change of clothes with them. I can tell when mine is coming- stomach cramps and rolls. So that is the silver lining.
So I guess this is my "new normal". Don't we love that phrase.
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