My Husband, My Life, My Love, My Family, My Cancer
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@mara51506 DD set the fire alarm off when she was here cooking. Our dogs run outside into the backyard and try to jump the 6 ft. high fence. It must hurt their ears terribly. We budget for beef with less grease, but honestly the price lately is ridiculous. Had to increase budget for bird feed, too. The brand we were buying was reasonable, but every time I would scoup out seed to fill feeders, the the residual dust would overwhelm me. Not healthy to breathe that in. So back to a better seed that has sunflower, small seed for finches and peanuts.
Did manage to run that weed whacker in the swale today. Our weather is going to be rough with lots of rain, and I wanted the swail cleaned out so the water flows thru the pipes and down to a drainage pond. I also potted more marigolds. DH keeps bringing them home. Not sure if and when to bring some plants in with the weather coming. It was a beautiful day today. I sat on the swing and watched birds and squirrels at play. A mockingbird was attacking a red-tailed hawk. She was relentless. The hawk had a squirrel in it's sites, but the mocking bird was the victor.
Concerned about the severe weather coming which included potential of tornadoes, high winds and flash flooding. So DH is going to grocery store to stock up and I w ill fill tubs and water jugs with water. Have to do a load of wash and then we are set. We have an interior closet that we chose as our safe space. Hoping DD and DGD come over, as I called and don't want them staying in their camper under these conditions. They live about 20 minutes away, but you have to access their camper by going to a remote area and down dirt roads. Lots of huge trees are of concern in their area.
Well Mara, I think it's time to call it a day. To be honest my day starts about 11 a.m. and bed time is usually 2 to 3 a.m. Always was a night owl.
In pockets for everyone's needs and wishing for stable scans and feeling better.
Irishlove
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Morning ladies, I haven't had any news on the last couple of day didn't know there is unpleasant weather coming for many. Sending safe vibes to all here that will be impacted by bad weather. Fingers crossed that doesn't cause damage.
@mkestrel Sending strength your way as I'm sorry to hear you're dealing with progression. May the next line of treatment kick cancers butt!!! Hugs❤️
Hi to all here , may today be a quiet Sunday for all🙏🌺
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@irishlove Yes, I do like the less grease factor myself but if I can only get the greasy kind, I will use baking soda whilst cooking and rinse after. I am using some today, add to the lasagna leftovers with lentils and cheese and microwave those. By the time all seasonings and bindings are finished, I will not notice the flavourless beef from the rinse. I also do not save grease as my fat content as bindings I use have their own fat. Other ideas I was thinking of is taking other veggies and rice to soak up any fat since I am aware we need fat. Oh well.
Stay safe and in pockets for no flash flooding. We have quite the wind going on here but think it is bringing in warmer weather. I do not mind the wind within reason, helps to dry up any rain received and we are in the up and down stuff right now.
Laundry, floors, bed making and possible blankets are on the go. Will get up early tomorrow as need to book Paratransit and make sure prescription is delivered. Probably around 8am so earlier to bed tonight. I slept well last night. Got another MRI this week, no anxiety toward it. I figure if I am able to eat and no symptoms I can perceive, I am OK, if there was more necrosis, worrying would not change that.
I am planning some sort of combo dish to have. Perhaps spray a large dish, add some garlic seasoning to it, crack in an egg, add some lentils, some of the beef some of the lasagna leftovers as well. Small amounts of each. I could also do a tiny amount of rice, I want to be able to finish it up, do not need extra leftovers. Microwave all for about 6 mins since microwave only 700 watts. Seasonings and binders like queso and sour cream to follow. If I have beans left, will add those too. I do like stuff micrwaved as few dishes and easier to divvy up. Option two would be to whip up couple of eggs, throw in the beef and also throw in lentils, some of the lasagna, not a crazy amount. Spray my muffin pan and add bits of cheese to the top. I also would like to check on the condition of my corn bread mix which is in an air tight container just to give an extra thickness to the egg mix. I will post as well if deciding to do that.
EDIT doing up the eggs whipped up, got beef, lentils and bit of lasagna to put in along with just a bit of the jiffy cornbread mix I have to thicken it up. Will fill a muffin tray, less than half full and then just eat all the egg bites. I will add salt before I put in. Also thinking pancake mix add to eggs pre whipping would give the egg extra body as well. Looking to add some of the diced potatoes to it as well and check on peppers. Seems a lot but if there is room in the magic bullet, no problem doing it all. I will use some sour cream to create a nice whipped mix. Bake in greased muffin pan on 375 for 20 mins in breville oven.
I hope everyone has a good day and in pockets for everyone.
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Uggghhh just lost my whole post to @mkestrel , @mara51506 @irishlove & @keywestfan ……. Sooo well, I wont repeat everything just well wishes to you all here . Ihave been really a lazybones yesterday and today. So I’m going to get off my butt and go get ready to meet my DD & SILat their restaurant to have a nice dinner celebration of my sweet DH’s birthday. He’s 75 today and healthy as a horse, God Bless him♥️🥰
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Happy Monday ladies
I hope the weather hasn’t caused too many issues. We’ve had rain and warm weather. Super high pollen. I haven’t cut back all the plants that got frost bite and I’m waiting for my son to help. Probably next weekend. I’ll tidy up the flower pots.
Mkestrel sorry to hear of your progression. I’m with Irish love and hopes the next line of treatment is tough enough for the cancer but easy on you.
Shanagirl Happy birthday to your DH!!!!
Irish love you’re inspiring. I’m so glad you’re planting marigolds I can smell them through your post!
Mara good 😊 vibes for the MRI do you take anything before going InThe machine?
keywestfan welcome to our thread. You sound so vivacious and full of vim and vigor. My mom is 92 and energetic but knee arthritis is finally slowing her down.
cookie54 I’m with you limited news watching but I did watch weather report.Waving hello to everyone.
Tanya
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@tanya_djamila I was thinking of you when I was visiting my brother in St. Pete a few weeks ago. If I had had my own car, I would have tried to meet you for lunch or something. (I guess with Ramadan, lunch would not have worked). It was very hot and pleasant-now I am back to snow!
Best wishes for everyone. I am on Orserdu and Ibrance now. Hope that the combo is working. I am losing some hair and have lots of muscle aches but hoping it is working. Hope that others' new treatments are also effective.
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Happy St. Patrick's Day to all. We are going to try to get a seat earlier so the corned beef and cabbage is still available. Seem to miss out most years. @shanagirl Hope you and your family enjoyed your DH's birthday. It's so great to have a family owned restaurant. Just as long as you don't have to do the cooking or dishes. lol
@mara51506 Mara you sound so good that I just know the MRI will be unremarkable. You take such good care of your health, home and kitties, plus friendships too. So glad you aren't worried as that takes joy out of everyday.
To all the gals that changed meds, wishing you a quick response and zero side effects. Please Lord let there be healing. believe in miracles. When I was first diagnosed, the hospital sent hospice to my house. Every medical person that dealt with me never made eye contact during that period of time. I told the MO I just wasn't ready to deal with the news. It took me 2 weeks to come to terms with my diagnosis and I prayed I wouldn't need that hospice program.
MO started Ibrance and Fulvesterant along with IV bone recasting (can't recall name as I'm on Xgeva now). Some of the SUV values were as high as 17. Cancer was in my lungs (pleural effusions), bones chest wall and lymph nodes. It has been a difficult journey, especially with MS. Within 3 months that awful looking scan was slowly improving and now I am in remission. I can't believe it and neither could the Hospitalist, as I bumped into him recently. My miracle as it's exactly 3 years since MBC entered my body. Guessing I'm here to continue to work on my relationship with DD and DGD. I am truly blessed.
Well the bad weather hit, plenty of severe thunderstorms, a few tornado watches and much needed rain. No flooding. My son in Charlotte and sis in PA were under the same weather pattern. We all made it thru unscathed. I hope you all did, too.
In pockets for all your scans and needs, too. Here's to a lovely green day.
Irishlove
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Happy St.Pat's to all🍀! I'm just so tired from this switch to Xeloda right now, that I can't really post much more. Also having computer problems and having to do everything on my phone for now. I'm not good at that at all; really like and need a full keyboard. The good part is that the Xeloda seems to be working initially at least. Tumor markers are back in the normal range and onc is calling this "an ongoing impressive response". It's bittersweet of course, because while I'm thrilled to see this fabulous initial response, I can't help but wonder just how long it might last. Scans next month .
I didn't realize so many other have moved on to new drugs also. Good St. Patrick's Day luck to all with these new regimens. .May we all get years and years from these new lines of treatment.
Missing the old family St. Patrick's Day celebrations over the years. My mother always made corned beef and cabbage every year, and I too made it for my husband, kids, and friends for years and years. It's just me now, so pretty much just another routine day anymore. I also learned years ago that no one in Ireland ate corned beef, and that it wasn't authentically Irish - probably just another Irish American thing. Oh well, it's become it's own tradition for whatever reason and I miss sharing it with friends and family.
Wishing everyone here a wonderful day!
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@irishlove I do not have any particular concern about the MRI, it is going to show what it will even if I decide to worry about it. It will be a short appointment and in the late afternoon into evening when I am picked up. No symptoms to worry about either. I am noticing that my reaction time to falls is improving, my ankle strength gets worked on several times everday, do it from the bed. I am sometimes a bit wobbly but able to stand up. I do use the step bench as well. Take one leg, step up and lift other leg and do a hamstring curl after. Usually 3 per leg. Helps my stepping strength.
No plans today, I was up late yesterday because got hungry and ate after nine o clock then decided floor needed mopping, it does look better, mop is still out so after sweep and quick vacuum in living room, will just run it around again.
Laundry will be done, mobile games for some budget boosting as well.
Got some ramen and chick peas heating up on the stove, already used the flavour pack, some taco and some garlic salt flavouring the noodles. I will soon turn off and cover with a lid. I will make a meat pie or two in microwave to go with it. Serve noodles on the side or over top. Put some sort of mayo on it. Later today, make an egg on english muffin.
Other than that unless something fantastic happens meal wise, I hope everyone has a good day and in pockets for all.
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Happy St Patrick's Day to all who celebrate, hope your enjoying some nice Irish treats!
@mara51506 Love your attitude regarding MRI, as usual a great perspective! In your pocket always💕
@threetree I wish you weren't dealing with such fatigue on Xeloda. Glad your numbers are going in a positive direction! I hope somehow your fatigue improves and you can enjoy your day a bit more.
@irishlove Hope you got your Irish meal today! I do enjoy irish potatoes, I use to make them with my daughter when she was little. Easy project to do with the kids. Glad you dodged the bullet with the weather. We had some crazy winds all night, it ripped my flag pole right off my siding lol. As the old folks used say March is in like a lion and out like a lamb, fingers crossed.
@chicagoan In your pocket with your new treatment, may it kick cancers tush!
@tanya_djamila Looking forward to getting in the yard soon to do spring clean-up . Hope your weather cooperates too!
Started my Ziplock bag seed sowing today, quick and easy. I had success with it last year so hopefully again this year. This year I planted, Zinnia, Daisy's , Marigolds, Cosmo and Nasturtium, we'll see how it goes… Loving the longer days even though it's in the 30's today I still enjoy the later sunsets. Hi to all, in your pockets for appts and struggles. May you have a peaceful evening.
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@mara51506 You sweet gal are a true warrior, IMHO. You just keep marching onward and have control over your daily challenges. I admire you greatly.
Hi lovely ladies and any gents that visit but don't post. Hope everyone is having a good evening and for those that changed meds, especially. It's great to hear a MO say the patient is a super responder. May that response last ages.
Found our corned beef and cabbage still available at our usual diner. My grandmother cooked it yearly, too. It was a little tough, the potatoes and cabbage were great. We had to eat outside as the "joint was packed". It was so loud inside also. DH bought me ear plugs but I'm kinda embarrassed to use them. I develop sensory overload at times, due to MS. To make up for the tough corned beef, DH treated me to the best burger eatery, plus cheesy fries and a milkshake for dinner. It was a wonderful day.
In pockets for all your needs and may you have a pain free good day .
Laurel
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@threetree I’m sorry the Xeloda is having the SE of extremely Tired. I think It’s a little bit Of everything combined. The weather other treatment meds, and I was reading an article in the local Patch that mentioned the constant daily fatigue everyone is experiencing lately is due to th recent time change and our bodies adjusting. Who knows. But I’m feeling that this cold and cough that’ hanging on has made me feel like I just want to go to bed during the day. I never made it to PT today. Just couldn[t bare to go. Especially after having the big D all day the last 2 days.
Love to everyone here. And hope you feel better soon @threetree 🩵🌷
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@irishlove Glad you could have a favourite meal and I can understand things being too noisy and needing to block the noise. I remember back in the day, when Star Wars special edition movies were being shown at the theatre and my niece found it loud so she wore ear muffs to muffle some of the sound out. Cute memory for me. She is in her mid thirties now but really have good memories of that.
I did not cook anything today, was hankering afer an egg mcmuffin and found a buy one get one free sausage mcmuffin but had to get a separate meal to get the hashbrowns so throughout day had 3 of the muffins altogether, a single muffin each meal and hashbrowns with the first meal. I don't mind, been good about grocery shopping.
My floor is looking pretty good now, the space under the tv stand is better as well. Yesterday made the mistake of doing a mop of the floor and it looked like dust spread around but looks better now. I also did a lot of mobile gaming for a bit of extra money, not a ton, bout1.50 across a couple of games. The little bits of money add up for me.
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Well, was up late, not unusual but slept OK anyway. Do not need to be out til 345 pm which is when I booked my Paratransit pickup, my home trip is for 615 pm as well.
Going to start laundry, make bed and do floors again, just a quick mop post small vacuum. Will wash the microfiber cloths as well. Got some soaking dishes as well from last night. Super lazy when it comes to scrubbing them and soaking allows a lighter scrub and rinse. As far as laundry, the floating lint filter I reinforced is working well. Threw out the worn out ones. I put a zip tie over the top pin to keep it held together and added three more zip ties on the edge and only keep one in the washer, realized more was not better as they just crashed into each other and likely caused damage.
Need to figure out meals, try for two before I leave, ate up the egg mcmuffins throughout the day yesterday. They were good for sure. Today I want more rice or pasta based meals, need to have eggs, beans mashed up and lentils. Thinking of quinoa and chia seeds and cheese. Might shop at Walmart tomorrow morning. Got a bunch of beefless ground too and still got a lot of different binders like mayo and such, I will figure it all out later. If unusual or good, will post meals later. I am debating a weird meal for me. One of the free things I picked up in the hall that was free was chef doyardee ravioli. I do not enjoy the tomato sauce so have thought maybe I could rinse off the tomato sauce and add it into other stuff that I do like, put a mix of queso, rice, some of the ravioli and perhaps some cheese. Have to make the rice first, 1/2 cup or so, mash up beans, chick peas and an egg perhaps. Still got queso and taco seasoning as well. If I do that, I definitely will post.
EDIT I had some leftovers of the chickpeas and ramen noodles. I put those together with rinsed of ravioli, chef Boyardee brand, rinsed the tomato sauce. Put the leftovers, the ravioli, cheese, lentils as well. Added shredded cheese to the top, microwaved 5 mins. Let it cool first. Added some taco strips, queso and sour cream with some sour cream seasoning and salt. Mixed together and it was delicious. Got more to have once I arrive home. It was good.
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Just got home from my MRI, it was OK since everyone was nice and people were talkative. Only thing I did wrong twice was get on the service elevator without noticing I did that. Oh well, got home not a problem at all really.
Was starving post MRI so ordered supper when got home. Get results of MRI next week on Thursday. Have a CT scan next week on Wednesday.
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Rainy here today, nice to have a couple days off, next week CT scan on Wednesday and then have results of MRI Thursday. Not really worried, aware yes but I would not categorize as worry. Worry won't change anything, not falling over or feeling any pressure in the head.
Spent about 30 mins darning a couple of holes in my socks, made harder as they are black but finally finished them. I like darning instead of buying right away.
Was craving another egg mcmuffin meal but apparently, McDonalds is not open, at least on skip the dishes, will eat at home. Got leftovers to get through anyway.
Keep cancelling streaming channels, I have one stack tv on Amazon but I really only watch one show and it is 17.00 a month, has other channels but really not watching them, rather keep the money to pay off insurance and other bills. Could get more motivated to play the mobile games and earn toward reactivating a channel. I kept youtube because I watch it all the time. Get the premium to avoid ads.
I have pulled out leftover ramen noodles, chickpeas, beefless ground and some cheese, thinking I will spray out the air fryer and add everything in there and just stir it, simple to do. Will post what I do have.
I hope everyone has a good day and in pockets for all.
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Happy Spring everyone! The brutal winter weather added another layer of stress on top of what we all deal with. Wishing you blue skies from now on!
Just like @threetree and @shanagirl , I have been fighting long term exhaustion. Finally complained to my MO enough that she did iron testing at my last blood work. Low/normal ferritin levels and low/normal B12 levels mean that I will be having monthly iron infusions and B12 injections (with daily pill form of B12 as well) for the next 3 months and then re-test.
Anyone have any experience with either treatment? I'm so tired of being tired.
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@eleanora I get monthly B12 shots and have been for over a year. My DD, who is a nurse, gives them to me at home. I do not do well with iron pills as they give me the Big D, so I don't do them. My MO is Okay with that as long as I am stable. They don't eliminate the fatigue but I do think they help. For some crazy reason Medicare doesn't cover the cost but I think it is worth it.
I am on my final day wearing my heart monitor. The problem is this is the worse day with chemo symptoms so I don't know what to write down in my log. I figure I will just explain it when I go in for a consultation.
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Good early morning everyone. I read your posts and one of the problem makers that we have in common is the fatigue. Count me as another one. It's so overwhelming I spend more hours in bed than up and about for the past 3 days. Also, my blood pressure is quite high, so I dipped into DH's meds. Normally my b.p. is just fine. Not lately and I hate how dizzy, light headed and with fatigue that's like I hit a wall. Good idea to check for iron deficency. I do have a drawer full of gummies, cranberry, D3, B-complex, calcium and magnesium. Gotta check if iron is part of one of the groups I take. Bye the way, there is a wonderful gummy that is for nausea. The primary ingredient is ginger. Since I've started taking this product, I no longer have to take zofran.
Finally received the grant info. It's strictly for breast cancer patient in the amount of $7000. It can be used for co-pays on Ibrance, X-geva and fulvestrant. I also rec'd a breakdown on monthly medical expenses and it listed Ibrance at $16.000 prior to insurance payment. Wow…Co-pay on Xgeva is now $700 every three months. Blessed to have this grant. I have to reapply in October.
We haven't gone out and about since the spring breakers are here now. Staying home other then dr. appts. Social media has been a catalyst in unsanctioned activities that are drawing thousands of students. Not enough police manpower to handle the crowds, traffic and trouble makers. I am sorry for vendors, but I wish Spring breakers moved on to another area.
We now have 12 squirrels raiding the feeders. I can't hurt any creature, but they empty those feeders quickly and the birds are limited to feeding time. I quickly refill but it's a bit much and of course expensive. I'll continue on as I love to watch the activity, but I'm concerned DH will work on a plan to remove these guys. We lost a number of tropical plants and ferns due to freeze. I double covered them and mulched the roots, but the freeze was too exstensive time wise and the plants didn't make it. The bottle brush did though, and I'm thrilled to see her come back. Still unsure of the hibiscus or bouganvilla . Next couple weeks we will know.
Wishing everyone good days and good nights. In your pockets for all your needs.
Laurel
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My legs are killing me and I can't sleep. This has been going on for days... At first I thought it was because I worked out in the garden but now I'm pretty sure it's the taxol. Back, hips, legs, feet ache all day and it's worse at night I think. Anyone else had ths? Pain pills not helping and I can't take ibuprofen.
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@mkestrel Ugh sorry to hear this pain was so bad it kept you up! I don't have any experience with Taxol but I'm sure someone will chime in soon. I hope it's temporary and your MO has some good insight into this. Hugs
@mara51506 Glad all is ok and your MRi went smoothly. Will be in your pocket for CT and results next week. Positive thought s that you're feeling well and it means all is well as can be!
@irishlove Awesome news regarding the Grant! Every little bit helps that's for sure. Ugh sorry your area has been invaded by the spring-breakers. I can only imagine the congestion it causes and ruins the peace. I hope things get back to near normal this week. Oh the squirrels….not my favorite creature that's for sure lol. They can be quite destructive and relentless…hope Dh finds a solution.
@eleanora Sorry you have been feeling so tired but glad you found the reason. I have dealt with iron and ferritan issues before but was managed orally and in my diet. I hope you see a big improvement with the infusion and shots and your numbers recover quickly, fingers crossed.
Was a quiet week in my world, no appointments…yaay. Weekend weather is looking nice so will get outside as much as possible. Hope everyone is hanging in there and has a bright moment in their day today.💕
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An update on me. I will be moving on from Lynparza. I had progression in the liver. Next step is biopsy, then discuss options. They had me talk to a clinical trial coordinator to get information.
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Candy - I’m so very sorry to read of your progression. Sure seems like many here are suddenly dealing with that. Please keep us posted on biopsy and treatment. In the meantime, I will keep you in my prayers🙏🏻🙏🏻.
Here for pocket duty for all in need. Mara, for upcoming scan and MRI results; Mkestrel, for pain; and everyone struggling with fatigue. As for me, I’ve had the nerve stimulator for my back pain for 5 weeks now and it hasn’t done much. I did read that there is around a 25% failure rate. Still holding out for some change during the remaining time.
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@mkestrel I have the extreme leg and joint pain on Taxol too. Mine started after my first treatment so I know the cause. It hits me day three after the infusion and lasts for three days. I take a pain pill when it gets bad and it helps. I also use a heating pad which seems to help. I was told I could also use ice but it is not my preferred treatment. I have noticed it is not as bad this time so perhaps it will lessen with time for you.
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Good nice spring morning everyone! I'm one that is so fatigued that it's just been too hard to post all the individual comments/support that I'd like to. I took the "easy way" out above, and agreed with @cookie54 's comments to some, as my sentiments are the same. I feel like it was a real cop out and I wish I had the energy to post to so many individually, but I just don't.
I will say @mkestrel , that I do get a lot of the same kinds of aches and pains that you described with the Xeloda (along with this mega fatigue) I have started taking, and like Taxol, it is considered a "true chemo", so maybe it's a chemo thing.
Well, I do follow along, really care about what everyone is experiencing, and wish everyone a great weekend. Hug's to all!
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@candy-678 sorry to hear about your progression and needing a biopsy. I just went through the same thing and hope everything goes smoothly for you and figure out a plan.
@intolight and @threetree thanks for sharing your ways of dealing with the aches. I have a blow up hot tub and I think maybe it's time to get set up. I ended up taking ibuprofen because I can't stand it and my regular pain medicine wasn't helping at all. Trying to walk it off at the park now.
I hope everyone has a good weekend
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@mekestral-Do you stretch? Now that I am on Orserdu, I have learned that I have to stretch all my muscles but particularly my legs for about a half hour before bed. Otherwise, I have literally woken up screaming from the pain in my thighs and calves. Maybe a hot bath/shower and stretching session would help you.
@candy-678. So sorry to hear about your progression. You have been on my mind. I wonder how you've been grieving the loss of your best friend-and now this? I hope that you can find a trial that will work for you.
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@mkestrel - I second what Chicagoan has said. I too have had terrible cramps and muscle pain, especially in my legs. I woke up one morning around 5:30 am and wanted to scream out, due to a cramp in my right calf . I live in an apartment with other people sleeping in their apartments right above, below, and next to me, so I managed to hold that desire to scream in some how. I'd never had a pain like that before. I remembered a calf stretch that a PT showed me last year, and I immediately started doing those again, and the pain in my calves has lessened considerably.
I don't like taking pain meds, especially NSAIDS, but I will occasionally do Tylenol if really struggling. I get minimal help from it, but it can take the edge off some of it. I think the walking and stretching gives the best results.
You might also consider getting your electrolytes checked. Mine go out of whack frequently and it's hard for me sometimes to tell the difference between the side effects of low electrolytes and those of this chemo (Xeloda), e.g. muscle pain, cramps, lightheadedness, weakness and fatigue . If it's electrolytes you need high electrolyte food and drink and sometimes IVs, and the stretching and walking won't particularly help - in fact, you may be too tired/weak to get a good walk in. Just some additional thoughts.
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I stretch some but could do more and that's a good idea to do it before bed, thanks. I have spinal cord damage and the wrong move sets off terrible cramps charlie horse but if I'm careful not to twist I can do some stretching
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@mkestrel I do very simple leg stretches and they really help. Even when I feel too tired, now I ask myself, do I want to wake up with cramps? If I stretch, I don't.
@threetree I live alone so I can scream. If I was in an apartment building, I would restrain myself but at times it has been so scary and painful. It's a Catch22-stretching in bed does not help-I have to get up and walk but I'm afraid to get up when both legs are cramping.
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