My Husband, My Life, My Love, My Family, My Cancer
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I am presently doing some laundry and it is sunny and fairly cool. Planning to finally check for mail after breakfast. It is much cooler. I am going to have a light breakfast with all the ingredients I like, bring along a granola bar as well. The walk should not be too bad, I don't feel as off balance as I used to feel which is good. I am feeling a lot of improvement which is leading me to not believe suggestion from MO of possible brain damage from radiation. Even if I am, I know the brain puts together new pathways. Going to stop listening to people about the negative and improve the positive, stay strong. My internet was really bad yesterday so could not post but it is OK today.
Going to have something with very small portions of bean, egg and rice with bit of cheese, and rice. Chopping up beans, spinach and cheese with wheat bran. 1 egg, will have another later, 1/8 cup rice precooked and then put all chopped ingredients in the fry pan, may also add 1/2 cooked hashbrown as well, save other half for later. Also need to stop eating peanut butter from the jar and start having a small amount post meals to avoid the craving. That is the biggest calorie suck I have, go back to having all the time but only a teaspoon each meal and get the goodness without the major calorie hit.
Going to get to the post office to pick up mail, been 3 weeks now. I will be glad when mail returns to the building. My internet is crapping out again, using hotspot for computer stuff and low resolution youtube, time to look into new modem I think instead of trying to save it.
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Thanks everyone!
@mara51506 The enhancement is in the surgical resection area from my craniotomy in 2020, so yeah, it may be treatment related, good to know you’ve dealt with an enhancement too.
Finally getting close to home. We left Houston yesterday afternoon, blew a tire on a small trailer we’re towing at 1am, had to get a hotel and new tire this morning, ugh. But, back on the road 🙂
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Good morning, everyone.
mae, I'm glad you're close to home and that nothing really bad happened when your tire blew on your trailer.
mara, don't you just love clear, cooler days? I sometimes don't mind the overcast, cooler days, but I probably would if it was the standard weather. I'm beginning to think there is no "standard" weather. Everything is so wonky now.
I can't scroll back to see the earlier posts, but I did read them and hope everyone has a peaceful, SE-free day.
Love to all,
Carol
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I do love cooler days. I still got a bit sweaty which is not unusual but not lightheaded. Bus stop did not offer shade and forgot UV umbrella. I got to the post office to find out it has been moved to a nearby street. Got a new key, would have been nice if property manager adv us of that. I gave the guy at the Post office building code which he can pass along once this construction is done. Dirt is mostly flat with a few hills.. I paused where I could and just lifted the heck out of my leg, this time, asked bus to put down ramp due to feeling off balance when got off the first time. PT is certainly working for me though, still think through what I need to do though. That is no problem.
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Congrats on good scans @illimae and @molliefish! Sending positive thoughts to all in the room.
I am enjoying the cooler days as well. I am in Upstate NY and it is starting to cool down a little from the heatwave we have had. Hope it continues to stay this way. I really enjoy the fall weather.
Is anyone here knowledgeable about results of genomic testing? I was looking at mine again which is always fun to do 🙄. I have the FGFR1 Amplification. Does anyone have this or have an understanding of it? I had asked my MO before and they said it's neither good or bad. Doing some research it says it can create a resistance to endocrine therapy and CDK Inhibitors. I am curious but also concerned. I want this line to work for as long as possible obviously. I think I am going too far into the rabbit hole.
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keris,
I don't have that mutation, but others. When I read something specific about a mutation, I check my results again and note a short comment in the margin or somewhere on the page….i.e. "don't have" - or if I have the mutation I'd write something like you wrote, "can create resistance to endocrine therapy and cdk inhibiters" and leave it at that. Then each time I review my results I at least have that comment.
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@keris113 Cur-ious, is our resident expert on trials, etc. I bet she can answer your question. She usually posts and reads on the clinical trials thread. Wish I could be of more help.
Waving hello to everyone. Reading and shaking my head in agreement. There is always but one more thing. Can't it just be some peace and pain free days? That's what I'm wishing everyone.
I have been waiting so long till MO appt. tomorrow. The office called today and said MO sick and no appt. till Oct. 2. Well, there's my just one more thing. Poor DH just held me while I cried my bloody eyes out. It's been 8 days since spinal tap looking for answers (2 months since first symptoms) and for a treatment plan. DH called the office back and told receptionist I would take any appt., any cancellation, etc., and that I was pretty fragile with not only physical but mental health. She had nothing available. MO does not have a NP. DH did call 30 days case worker who will set up appt. with GP for tomorrow. I just can't open that portal and read it. Frankly I'm not prepared for what it will say from spinal tap results. Maybe the GP (who is also an internal specialist) can help with the results and some kind of treatment. Monday appt. for first therapy session.
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(previously LivingIVlife)
Checking in. Just been lurking as they say.
Mae and Molliefish- yay for great scans
Dodgers- it's ridiculous if you are in rehab you can't receive treatment. Also my condolences for the passing of your father.
Irishlove- your daily struggles are a heavy load. May you find an excellent therapist to talk to.
Emac- love the picture of you and your father. I wore a hat or scarf for the simple reason I would get cold without it.
SF cakes- happy memories of your DH are held close.
I have missed mentioning so many of you .
Up here in the Maritimes we are waiting on the remnants of Hurricane Lee. Probably a tropical storm with lots of rain and wind. Have brought all our outdoor furniture etc. in, have the generator ready and being prepared for if the power goes out. DH will be working but I have Belle to keep me company. Last year I slept through Hurricane Fiona! 😆
If the power goes out I have a bunch of fall wreaths I am working on.
Again waving hello 👋 to all.
Debbie
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Hello Ladies ~ just saying a goodnight to everyone. Hope everyone sleeps well. I wait and count the hours until I can be in my bedroom and ready to sleep. It’s the only refuge I have anymore. When I’m awake. The fatigue is draining and I feel like I want to be in bed again. My mouth has flared up again and it’s very uncomfortable and painful. There really is always one more thing. If drills pain I do my head like a drill. I ended up with quite a headache after the day was through. I hope you ladies are at least hanging in there. Good to see Gailmary checking in. Sending out love and hugs to all you ladies. Sleep well !
Mae, sorry about your tire glad no one was hurt, glad you’re on your way home. Molliefish, good to see you too, we love good news.!!
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Hey everyone, just checking in before going to bed. I’m really tired this evening so I’m just sending caring thoughts to you all tonight and hoping you sleep well.. @micmel I just want to say I’m sorry your mouth is flaring up again, I hope it passes quickly and you have something to treat it with early enough to keep it from getting as bad as it was last time,🩵. Goodnight everyone🌙😘😴
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irish, you have been through so much and this was definitely the last straw. Cry, rant, scream, do everything you want because you deserve to let it all out. Praying the doctor you see tomorrow will help you and have answers.
Mel, wish your livingroom was tangible and not just virtual so we could surround you with love and hugs—with masks on of course! Instead, know we are here for you.
bellelove, stay safe from this storm.
Praying for a restful evening for us all.
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mel, I hear you! It's around 7:30 and I'm counting the minutes until I can take some Zzzz-quil and go to bed. If I try to go to bed much before 10 pm, I have trouble falling and staying asleep. Unlike DH who is ALREADY in bed because he has an early bike ride tomorrow. He can fall asleep and be snoring within 2 minutes of his head hitting the pillow. Some things are just not fair!
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Irish, I'm so sorry that your MO appt was cancelled... can only imagine that it's been like holding your breath to get the results and now they're delayed again. So frustrating, I would be sobbing my eyes out too.
Mel, mouth sores just suck. I wish this would stop for you!
Had to renew my passport, as it was expiring in a few months, and naturally the new photo is hilariously bad. Just had to laugh, remind myself it doesn't matter at all, and be grateful that maybe I could do a wee bit of international travel before I kick the bucket.
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Morning all, finally feels like Fall is here!
irish You have every right to have a meltdown, I would of had one a long time ago. Cry, rant, scream don't hold it in you have been through so much. I'm glad you will soon be speaking with a professional to unburden this load. Finger's crossed that you get in with your MO soon.
Mel Ugh sorry your mouth is flaring up, hope it passes quickly.
bellelove Stay safe and also hope the hurricane passes quick and minimal damage. Can't believe you slept through Fiona lol. I can't even sleep through a thunderstorm!
keris glad your enjoying the crisp air also. Hope you get some more info on genomics, not my strong point.
sfcakes Ha those pictures are always a crack-up, your right who cares! Glad your thinking about travel.
sunshine I always tell my DH he had the gift to sleep and my kids got it too. Lovingly jealous for sure.
mara Glad your PT is showing signs of working. Plus give yourself credit the PT is only as good as the work put in by the patient. You are the model patient always working hard! Nothing but admiration here…
Wishing everyone a day of improvement.🍂🍁
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Thank you very much for caring for my mouth issues. You’re all so wonderful to share this place With. I too wish it was a real place we could go with endless friendship and support. Hugs to all you.
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Oh Mel, didn't you just go through this not so long ago? So sorry! Mouth sores can be nasty. Take care and feel better soon.
(I also agree with so many others that it would be wonderful if this good be an "in person" thing and we could all sit around and sip coffee together (under our masks of course).
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Threetree~it seems like it’s a chronic thing now. I’ll have to live with for the rest of my life. It’s called mucositis . I actually have another condition to deal with. It’s very painful. It’s not sores. It is like my tongue tissue is marbling into sore patches that stretch down my throat. So another challenge is placed in front of me. I have been taking ibrance for 7.5 years. The toll has been taken.
But I appreciate all the good words from everyone. Cancer is the gift that keeps on giving .
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Well, as you all may or may not be aware, been having terrible trouble with my modem cutting in an out. First thought it was a straight signal problem, few days ago, noticed a loose connector that cable plugs into. Wondered If I plugged a ziptied ethernet cord in and wrapped the loose connector, perhaps it would not move around so much, decided to give it a go and all of a sudden it is working. I be interested to see if this set up keeps the signal going. If not will switch the service
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@micmel How no, I'm sorry this is happening. Bet it's not listed as a side effect from Ibrance. But then again what can you do but try to treat this. I know you probably tried magic mouthwash. I have scraped my tongue in the past when I had thrush. I doubt this will help, but I eat yogurt every single day.. This sounds so terribly painful.
Waving hi to everyone. Thanking you all for the amazing support. I think we should do a collective scream to let out all the frustration known as b.c. and treatment side effects. I'm gonna ask GP about provigil for exhaustion. I think that's the med I took years ago when I was on chemo for MS. Anyone else??
I have managed to get a GP appt. at 4 today. The nurse asked what for??? Well, I don't want to overwhelm myself or office, but thinking referral for hearing loss, have him open my portal, review spinal tap and see if there's a treatment he could recommend (ie: solumedrol?) and also get this anxiety under control. Reading up on meds, looks like some chemo meds cause hearing loss, but I don't recall reading that about Ibrance or Zometa? Definetly a possibility when you have autoimmune disorder.
Wishing everyone a cool, peaceful weekend and be safe from Hurricane Lee folks in New England and Canada.
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Mel, I'm so sorry that this is a chronic thing now with no "cure". I have always associated mucositis with IV chemo, not anything like Ibrance. Now that I think about it though I do remember seeing "mouth sores" as a possible side effect of the Verzenio that I take. They must be talking about the same thing, since the two drugs are so related. I thought they had some sort of treatments for mucositis, but maybe not. Again, just so sorry that you'll be having to deal with that now on a regular basis.
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Gee Mel, that stinks. I hope you gind something for relief or figure out what triggers flare ups. Who would guess that you would have a side effect like mouth sores to deal with? No wonder other people don't get how hard we can have it. It's all those little things that add up. And no point trying to mention it to other people. You say anything and they think they have the same thing. What you complaining about?
Case in point. Vaginal atrophy. Friend says oh I have that too. It comes with menopause. I try to explain how mine will be worse with NO estrogen and lube alone just for those times is not gonna cut it. Then friend continues to blow it off. I can feel the discomfort just changing panties!
and they think they
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micmel,
I don't remember if I've exchanged messages with you on another thread re mouth sores, so my apologies if this is a repeat.
These are the interventions I follow to try to keep my mouth stable: I see a periodontist every 3 months. Her focus is gum health, but she takes an interest in the health of my entire mouth. My periodontist's product recommendations for mouth sores: 1.) AO ProVantage Oral gel - it's an antioxidant. 2.) Stellelife Vega Oral gel - it's a homeopathic product. 3.) XLEAR - saline & xylitol Nasal rinse packets to be used instead as a Mouth rinse. All available on Amazon
I've also made use of the Bristle Oral Health Test. See It's a bit expensive, but I learned from my results and made some changes. I used their Oral Health Probiotic product for 3 months to hopefully improve my oral microbiome.
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Mel, I am hoping that those intervention could ease symptoms, I am in your pocket always, thinking of you and petting Theo when you are not looking.
Gave up on trying to fix an old broken modem, I am too stubborn for my own good. Got on a service chat and technician coming out to change it. Will be upgraded, nice price for two years then goes up but my plan is to live cheap or earn more and put aside in another account as savings. I may have to shop differently and stop shopping at Costco. Have to move TV and unplug everything. They'll complain about the signal since no dedicated outlets available but nothing to be done about that but my previous internet worked until the connector broke.
In the meantime, eggs, beans with wheat bran and cheese chopped up and cooked up in frypan, unsure of seasoning to be used. Beans, wheat bran and cheese chopped first and then the egg after. Run chopper with egg and cook up in frypan. Got to eat better today, only had chips and peanut butter yesterday due to frustration with the modem. Awful, I told myself it was terrible too. Oh well, new day and something to look forward to. Laundry done, have to dust and vacuum back of television and remove everything.
Edited to add, breakfast was really good, used a vegetable seasoning usually used in a soup, little bit of steak sauce, small amount of mayo. I really enjoyed it.
May head up to the new mailbox we were given, not as far away, think I know the way to do it, older DB is worried I will fall but it has been almost 4 weeks and sometimes the hospital mails app'ts. Will do later I think, nice sunny and cool day, take water and UV umbrella to aid in staying cooler. I can do that anytime. No bus makes it any shorter.
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wen~ thank you very much for the helpful information! I will certainly look into it. You ladies are great. To top off the mouth issues. I learned today my oncologist is leaving our network I have to get a new MO immediately. I’ve had my MO for 7.5 years. I’m broken hearted to say the least. He was my security blanket and what he said I took to the bank. Now I have to adjust to someone else. I know it happens all the time. And is normal in the medical field. But it still sucks all the same. I’m totally bummed. Thank you for all the kind words and information…. Enjoy your weekend
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Mara, I feel your pain with the Internet thing. Is it the modem, the connector, the service provider, gremlins??? Who knows? Sometimes, the techs who come out to repair stuff know less than we do. We had one guy tell us our signal was too strong, another told us the signal was too weak. (This was in our vacation rental.) DH ended up running new cable everywhere. It was a major pain (for him) but it had to be done. The cable company was NOT helpful with that at all. Fingers crossed that it gets fixed for you.
Mel, thinking of you and hoping your mouth issues get resolved SOON! I’m so sorry about losing your MO. It totally sucks to have to get to know someone new and to have them get to know us.
I hope everyone has a decent weekend. Stay safe if you’re in the Northeast.
Carol
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Mel - sorry to hear your MO left the network. I still miss my original MO that retired.
Mara - I'm glad you are getting better internet.
I have a question for the group. I saw my MO on Thursday for a chemo recheck. It sounds like things are improving. The lungs appear stable, the brain is now stable and bones only show uptake in the normal spots, nothing new. I have the new spots in the liver. He wants to continue on the fulvestrant/Piqray because I have only been on it for about a month and a half. That seems reasonable as the liver mets are small and could have been there pre-Piqray. I have now done 6 of 12 Taxol treatments. He offered to let me stop the Taxol. I appreciate that he is offering me the option to choose but I declined. I feel like I'm finally making progress and it seems like stopping early might be shooting myself in the foot for the struggle I've gone through. I feel like the effects are tolerable right now. It's so tempting to stop. What would you do?
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as long as you feel strong enough to handle it , and are seeing results. I would continue to go on. Your health is the barometer and your tolerance for the treatment is so important. I wish you nothing but well.
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Ladies on Eliquis/Apixiban blood thinners - did anyone have issues with progressive muscle weakness and fatigue/malaise? Im on my off week for Xeloda and I have felt just terrible all week, like a low grade flu or how I would feel at the end of an Ibrance cycle. Also, according to my super watch, the 6K steps I could do when mom was here and not feel too bad, well now Im averaging about 3500 and end up crying with fatigue by the end of a mile walk. My bloods look fine and have been trending same as always since this kicked off. Its been about two months on this drug, so willing to do another month, have the talk with hematology and see where we are at. NHS want me on it 6 months minimum, oncologist is saying rest of life. I dunno if I could do the latter at this level of fatigue and weakness, this isn't any way to live and thats on top of this stupid hip.
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Sondra- I am on Eliquis. I do not have any muscle weakness. I always have fatigue, LOL, but I think that is the Lynparza. I do not exercise/walk. Just around inside my house, but certainly not thousands of steps or a mile!!! I don't have the energy for that.
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In my case it was the modem that had a bad connector that started the trouble. The installer will no doubt complain about the power cords but nothing to be done about that, no outlets available on their own. Going step by step unplugging anything not being used right and vacuuming the cat fur. Might leave the TV stand to the side so he can get back there more easily, move fan and heater off to the side and just make sure it is dust free as much as possible. Have a lot of cable management stuff to clean out. Cat fur is incredible even with almost daily dusting. I am looking forward to streaming to make money off the tv by playing ads. Just getting tired from each step of unplugging and cleaning so taking short breaks and pacing myself.
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