My Husband, My Life, My Love, My Family, My Cancer
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it’s only been a short time off of treatment. Maybe a small difference. I have been trying everything I can. It just plain hurts. I’ll continue to combat this Mouth issue. I guess that’s what 55 cycles of ibrance gets you. I don’t want to not go back On it because it’s my first line.
Candy ~I hope your tummy feels better being nauseous is so bothersome.
Boy we all have our own bags of shit to deal with.
BooBoo~ how are you feeling. ? Glad to be back in Florida? Waving to Tanya.
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Sunday morning all. Any for "pocket duty" list for the week of Nov 8 ?
emac- Bone scan-- Monday
Mae- Brain MRI and neuro rads MO-- Wednesday and Gamma Knife--- Friday
Kittykat- PET-- Tuesday
Katyblu- Labs-- Tuesday and NP visit-- Wednesday
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I need you all this week.
Wednesday-MRI to see if I have anymore brain mets than the current 3 and follow up with neuro rads MO.
Friday-Gamma knife radiation again, which I hate so much.
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I have a pet/ct scan on Tuesday, nervous about this one because I've been off chemo for so long.
In your pocket Mae for all that's going on with you this week, fingers crossed for good results from the MRI.
Mel, I hope you get relief from your mouth sores and Laurie I hope your oncologist gives you good news. Candy I really feel for you with being nauseous all the time.
Waving hi to everyone else and wishing you all a peaceful week.
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Mae will be in your pocket both days.
Mel I hope your mouth heals soon. Sounds awful
Candy that nausea is really killing QOL I hope you feel better soon
Tany
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Mae- you do have a crappy week coming up. Thinking of you and hoping for great results
Kittykat- scans are always scary especially waiting for the results. Stay positive girl.
Mel- you have been on Ibrance for a long time! I think this is just a hiccup and will be back on it .
Have a good day everyone
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Thinking of you all this week. Pocket duty here too!
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Mae, Jumping in your pocket on Weds and Fri. Hoping the mri shows nothing new and the gamma knife is as good as it can be.
KittyKat, pocket duty for you on Tues. Fingers all crossed for a good report.
Mel, The mouth sores sound so bad for you. Maybe you need a longer break from Ibrance? Last spring I had a 9 week break (a few reasons) and nothing new showed up on scans after that but my counts recovered and I felt pretty darn good. Maybe your mouth needs it, even 1 month?
Candy, Great for some improvement on the nausea, but boo for the pizza night and grocery day. Is your new dosage still high compared with others you’ve read about? I saw that article about researching less than maximum tolerable does rather than just maximum. Having a low bmi should be taken into account. I hope you have a better day today.
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thanks Mods !
I'm here for early morning pocket duty tomorrow. Mae! And whoever else needs it !
I do have a month off and I'm going to take what I think I need until it feels better. I also had a few small breaks along the way. I'm rinsing my mouth like a mad woman . But it's helping. They aren't sores. It's a burning like burnt cheese on your tongue from pizza being too hot.
Rosie. 9 weeks sounds good. I'll take it !
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Rosie- I really do not know what is "normal" dosing for Lynparza and MBC. The Lynparza Thread on here is not active. And I am on a Lynparza Facebook group, but most are ovarian cancer ladies and not MBC so I cannot compare their dosing to me. Most are on 600mg a day, but some post 400mg. But I really do not know what dosing is still considered good for PFS with MBC. My MO has not said either.
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booboo1: I was so happy to hear about your PET scan. I hope it does mean that things are working for you!! I wish you didn't have to wait.
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Candy, hello from your ol' research wonk friend. On the Lynparza web site, under mbc dosing, it describes 600 mg per day as the standard dose, 500 mg per day as the initial dose reduction, and 400 mg per day as the final dose reduction. Looks like about 25% of the patients in the trials had their dose reduced.
https://www.lynparzahcp.com/metastatic-breast-cancer/olaparib-dosing.html
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Mae, my dear, count me in. I’ll be there with jelly beans. I’ll also be the one singing in your ear (off-tune) “Macho Man”. Now, that is not directed at you, but have you ever heard a song briefly and couldn’t get it outta your head? Well, lucky me it’s that one! Seriously though, it’ll be over before you know it, but until then, we are all thinking positive thoughts for you.
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Mel,
This treatment is not too bad, but I’m trying to figure out if my current upset stomach is related to the chemo drugs or if I picked up a bug in my travels. Hopefully it’s temporary.
Yes, this time of year I have to say yes, I am glad I’m in FL. Today was in the 70s, and the nights are pretty cool, so we can finally turn off the air conditioner. It’ll go back on if temps start climbing again, but it sure is nice for now. I just wish I could be in PA for when it is stinking hot here, but we can’t afford that, so I’ll just continue to stay with my sisters as long as they will have me.
Elderberry, thank you. I’m hoping for good news too!
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Mae, definitely in your pocket this week! I hope the MRI goes smoothly and doesn’t show anything new. I’m not sure what the gamma knife is but I hope that it goes well for you. I’ve been sneaking Reese peanut butter cups this week so I’ll stash some for pocket duty.
Mel, I’m so sorry about your mouth sores! Having them down your throat, feeling like burning must be awful. I hope this break from treatment helps heal these and that they never return.
Candy, the continued nausea must be awful. I hope you can get some relief soon!
I have blood work on Tuesday. Hopefully my levels are back up and I can start cycle 3 on Wednesday. I meet with the nurse practitioner on Wednesday.
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Thanks everyone, I appreciate it.
Katyblu, gamma knife is a type of targeted brain radiation, which is easy but a metal frame is screwed to my head and the numbing injection are what I dread the most.
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Hello ShetlandPony my research friend. Thanks. I told my MO I wanted the next lower dose. I want to continue using what dose will do good on the cancer. We are doing the 500mg a day dose for now. I wonder about PFS in the reduced doses. Since you are researching, SP, how about the question I posed on the Ibrance Thread today. About infection risk with other targeted therapies--- Lynparza, Piqray, etc. Check out my comments and see if you have any ideas. Thanks.
Katyblu- Today the nausea has been better--- woohoo. Cautious about my food choices and intake, but happy that for today at least I got some relief.
Edited--- Shetland, it looks from your link that there is a risk of febrile neutropenia and infections with Lynparza. Our discussion on the Ibrance Thread was about how with Ibrance use, the cells are "suspended" and not "killed" as with chemo. And that with Ibrance, even with low numbers, the chance of infection is not increased. I never really believed that, but... Looks like with Lynparza there is a risk and one should be cautious about becoming ill.
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Oh Mae~ I hate cancer. You’re so strong. Sending you hugs. I think I’d freak out .ty you for sharing the reality of it all. Hugs to you.
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Mae-That looks so painful. Will be thinking of you on Friday.
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Ready for pocket duty this week. Good luck to all and hoping for good results!
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Candy~ I’m glad your stomach is better.
Mara~ waving hello.
Rosie ~ good to see you.
Lee~ hi there!
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Illimae- sending good mojo for MRI Wednesday and gamma on Friday…you’ve got this!
Mel- ugh…mouth sores are miserable…I tried swishing peroxide after a week of suffering and they finally started to clear up. Stress didn’t help. They start again in five days…oh well.
Root canal tomorrow…WTH…it’s only money.
Hope this is a good week for everyone
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Lol, I did freak out the first time, lots of cussing and crying. I felt so bad for DH when he first saw me in the frame, he was horrified. It’s brutal but it’s the price I pay for future joy. Perhaps that’s part of why I look for anything that brings happiness, the cost is high, so I aim to get what I paid for.
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So well said, Illimae!
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Jumping in pockets with Snickers bars - Mae (OMG ‐ that picture!) and Kittykat and Katyblu.
Candy- glad you had a little better day...hopefully the first of many
Mel, I'm sorry you're in such pain and hope it recedes soon.
We are not quite packed, but we're getting close. The movers will be here Saturday! Then, we drive two days to the new house to meet the movers; stay a few days and fly back to live in the camper for a few weeks while dh finishes up work; unpackingwill have to wait. There's more fun to follow, but I'll fill you in on that later. I keep telling myself - one step at a time and all the pieces will fall into place. Just breathe.
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In Candy's, Kittykat's and Mae's pockets this coming week. I am sorry you have to wear that contraption Mae.
Mel, waving back, it sounds like you have burning mouth syndrome and whatever meds you are taking in combo with meds may help. They also recommend rinses with salt water as well among other things. Hopefully the medication break will help clear it up for you.
Have not done much this weekend, just my surveys and other things to make money. Gotta love Purolator, they are good because they brought a package for me and left it at my door but no little knock and they must be able to get in the building as no call to be let in. Had I not ordered some food today, I would have risked leaving the package until tomorrow. They really should call to let me know its there or knock when leaving at my door.
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Here for pocket duty this weekfor Kittycat Tuesday, and Mae Wednesday and Friday!
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I'm down for pocket duty with Fun Size bags of Skittles! Mae, I knew what was involved in the gamma knife therapy on a technical level. That photo though... OMG.
I am doing a bone scan tomorrow. I wish I could say that I have a specific pain that was describable. I don't know what's going on with me and I think this is a starting point for my MO. When I stand I have crushing pain in my legs. From my feet to my knees and up through the hips. I would swear even the long bones feel achy. But none of it is localized. It's just a generalized "ouch" when I stand. I hobble for a few steps and then it gets progressively better. Makes me think maybe arthritis, especially since we got wet and cold in Oregon the last few months. I have new localized pain between my shoulder blades where my compression fracture is at T8 and sometimes I wake up at night with zings in my legs and ache at that spot in my spine.
So I don't know. I'm in the process of telling myself not to worry until I need to worry. I just feel like the last several months what I had been doing fairly routinely now takes more energy and I wear out faster. I'm really struggling at work and keeping up with the house. My last few scans showed stable NED status. I think I'm just nervous that things have changed. Isn't that always the challenge though, right?
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Jumping in pockets too!
Mel, has Ulcer Ease rinse helped your mouth sores? If helpful, I can grab a photo of the label
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Thinking of everyone with scans & treatments this week. Checking out till Friday. Final packing today, along w/pre-signing our portion of closing and trip to docs for B12 shot. Movers come tomorrow to load, unload at new home Wednesday, without internet until Friday. I'm already exhausted but will start steroids this am to help reduce pain for a week so I can get some work done
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