My Husband, My Life, My Love, My Family, My Cancer
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Good morning to everyone. I do get neuropathy in my feet 🦶 but not every day. It seems to happen within the 2 weeks after I get my Xgeva & Fasoldex shots. I also get it in my fingers but usually I think it’s related to my cervical neck flareups of stenosis. I’ve been really suffering with a sudden total hearing loss in my right ear. I am wondering what’s causing it and i keep thinking the worst, and i want to make appt with my GP. This week,. And hopefully she’ll know what’s going on or send me to an audiologist or otolaryngologist.
@emac877 , @candy-678 , @weninwi , @micmel , @mara51506 , @irishlove @illimae @sondraf , @sunshine99 , @wren44 @intolight and so many more of you are on my mind and in my heart for what you are all facing each day, ♥️🩵💗🙏
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Emac~ I’m sending hugs for you. Thanks for sharing your experience, it helps to know these things. My back is not letting up and taking care of Theo makes it hurt more. I just wish for us we could get a break and wake up one day hearing there is a cure for cancer. It’s so hard to live this way. Seeing you in that machine swells my heart for you. I’m am sending gentle hugs. Please get some rest.
hello Mods.
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Emac, thanks for sharing. It does take some of the anxiety away to see this in action.
Got a UTI (again.) Did a video appointment yesterday and started immediately on antibiotics but feel much worse today. Perhaps it is the incorrect antibiotic although those symptoms have improved. I just ache all over and have nausea and a headache. Always something! So I had to cancel our outing today and will just rest.
Happy Labor Day to all our USA friends.
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@irishlove, I haven’t seen @dodgersgirl lately. Hoping she’s ok.
Thank you for posting about @msdebbielee. First timers are in an especially tough place, it seems – until they find US. This group is a Godsend for support.
@brutersmom, I so hear you about the medical reports and lung issues. So far, the best anyone can come up with is “unknown etiology.” Not exactly helpful.
Question about neuropathy. Is it always tingling or is it sometimes numbness? I have occasional numbness in one area of my foot, but no tingling like during IV chemo. My feet are still very ticklish during my pedicures, so they can’t be too numb. LOL
@emac, I’m sorry you needed, but glad you got, the IV hydration. It made a world of difference for me when I was dehydrated after the Ibrance problems. That is one crazy looking machine!
@mara, good luck with the trip for your Herceptin. Hoping the regular bus is on schedule and that you don’t have to walk too far in between stops.
@shanagirl, hearing??? Really? I really hope it’s “nothing” or something small and treatable. Is your GP good about referrals?
@micmel, I hope your back stops hurting. I wish there was some magic thing you could do (heating pad, ice, or ???) that would make it better. Pain like that can be incapacitating – everything you do sends you into spasms, so you’re afraid to move.
@intolight, I’m so sorry you have another UTI! Yuck! Did they give you the pill that turns your urine deep orange but relieves the pain. It’s called something like “pyridium” as I recall.
I have a video visit with the neurologist tomorrow to discuss the EEG and then will see my MO on Wednesday and get my Zometa infusion. I have a list of questions for my MO. I’ll message them to her ahead of time. I’m worried she’ll put me back on the Ibrance. I’m willing (barely) to give it one more try, but since the last two times landed me in Urgent Care with vomiting and dehydration, I’m a little gun-shy about trying again.
Waving hi to everyone in the living room.
Carol
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@sunshine99 , Yes, I have suddenly lost all hearing in my right ear.nI hope it’s nothing but my GP knows my ears from check ups in the past. If she finds it’s not earwax build up, or infection I wil ask her to refer me to an otolaryngologist neurotologist for head and neck, but I’m going to call my neurologist who treats my cervical neck stenosis and ask him if the hearing loss could be related., I know my oncologist will want me to see a specialist that he recommends up there where he is in North Jersey. I. Want to see one recommended by my neurologist. I’ve also been having balance issues the last 2 weeks. Since those Fasoldex and Xgeva shots. I hat that there are no doctors on today and not being able to hear out of that ear.
@intolight sorry. You. Are not feeling well. I can relate to the ache all over headache feelings with he UTI, I get them too once a year or so, but today I to feel nauseous achy and headache with my ear. It sucks doesn’t it?
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@emac877 I hope you are feeling a better today. P.S. Love your sneakers. I'm glad to hear the treatment wasn't harsh.
@shanagirl I saw neuro for the intercranial pressure and hearing loss and he said it was depression. Ok, so it's been 20 days of Zoloft and no change in either problem. Does your head and ear feel "congested"? That's the best way I can describe this onset. Lost 1/2 hearing in R ear 7 years ago due to MS attack. I have a lovely tinnitus in that ear now. I hope they get to the bottom of this immediately. It is very upsetting I know…
@micmel I'm sorry you are hurting so badly. I agree that pain is one of the worst burdens of this disease. Hope you get some rest and your strength returns and pain dissipates.
Well pharmacy closed sat., sun., and today, so RX called in by er doc Thursday night means no pain relief again today for me. Stuck with tylenol otc. I decided to stay with the gabapentin, at only 300 mg at night time. The tremors are less with 300 mg, unfortunately the pain is increased. Pick my poison.
Waving hello to all and in pockets for scans and support.
Laurel
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emac Thanks for sharing that pic. I have always had concerns about my entire face being covered so glad it's not! Glad to hear things went well considering what you have to deal with. Good to hear your mom is home also prayers for her safety.
Mel Hope your back is feeling better today.
Shanagirl Hope you hearing loss is jut a simple ball of wax , something easy!! Continued prayers. Love the fish, beautiful and peaceful to watch.
intolight Hope you are getting relief today from the UTI. Fingers crossed that you are on the right antibiotics maybe they needed a day or two to kick in. I also use AZO OTC for symptom relief for the pain, urgency etc. Fingers crossed.
Sunshine God I hope you finally get some answers and treatment you have been suffering too long! I don't blame you I would be gun-shy also.
irish Hope you get in touch with your doc today and your next medication does the trick!
Doing ok here was a little crappy yesterday but better today. I think my body is saying wt* is going on in here at times. It's getting used to Xeloda again and then they are always adjusting my thyroid meds. Since I was so lucky to have thyroid cancer during my Stage 3 breast cancer treatment in 2020..whatever right lol. But here I am to tell the story that ordinary people are tired of listening to except for you lovely ladies…so grateful.
We did enjoy the long weekend boating with our family the weather was beautiful. Our boat is still in the water at the marina we checked out of our summer rental. Hoping to boat a little in September with the cooler weather.
Waving hi to all here ,good vibes for a stable yet improving week ahead.❤️
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Cookie~Thank you very much, I appreciate it very much. I’m hoping it’s feeling better too. Trying not to do too much. Hope your adjustment to the meds clears up for you soon. I’ve heard Xeloda can give you issues. Sending hugs.
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Emac, thank you for sharing the picture. Different and better looking mask with more room to breath. Better than mesh masks, glad you got through it.
Mel, I am sorry your back is sore, in pocket for it to feel better.
Mel, I am sorry for the back pain you are dealing with, sending warm thoughts to warm up your back. In your pocket for your back to stop hurting.
Into light, sorry your outing was cancelled. Yes there always is something it seems.
sunshine, it is going to be superhot tomorrow so I will be prepared to stay out of the sun. UV umbrella to shade me, light capris or shorts, loose shirt and neck fan, keeping water on hand as well. May need a knapsack to carry it all and bring extra chargers. I don't walk far, but feel like that helps and when coming home, wait in cancer clinic. We are only hot a couple of days. Mail checking will have to wait, not going to go out unless with DB or app't.
Staying in today, it is hot and if I do not need to be out, not risking it.
Doing some laundry, and making wash soda at the same time which just finished. Will be doing PT and possibly some nordic movements with walking sticks. I don't have them on the ground but find them easier to use and I either march or sit and do them. Limiting to 5 to 10 minutes to pace myself. Hold them up higher when sitting. Doing to regular music right now.
Edited breakfast. 1/4 cup beans, handful of shredded cheese and wheat bran chopped up in chopper. Put the ground beef texture into frypan with precooked pasta. Added some mild garlic spread and cooked up until garlic melted. Added salt while plating and a llttle ranch as well. Was delicious. Skipped eggs until this evening. Going to make the poached type in my egg cooker. Probably make an egg sandwich by toasting an english muffin as well.
Have a good day and in pockets for anyone who needs me.
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On the topic of ears and ear wax, my DH was having trouble with wax in one of his ears. He made an appointment with his PCP and ended up seeing the PA. Anyway, the PA irrigated his ear with Colace (yes, the stool softener) and was able to flush the wax out. DH was SO happy, he gave her a hug! Colace? Who'd have thought? DH was thrilled, as they've not often been successful in getting the wax out of his ears.
I ordered some Colace (generic), medicine droppers and a special spray bottle for ear irrigation.
Shanagirl, I hope your issue gets resolved.
Waving hi to everyone. Had a great weekend with our kids. Am waiting now to sign in for my video visit with the neurologist to discuss my EEG study. Tomorrow is my appointment with my MO and my Zometa infusion. I messaged her with questions about continuing Ibrance and mentioned the ongoing coughing and swallowing issues.
I have an appointment for my swallow motility study next Monday and then the pulmonologist the Monday after that.
I'm cleaning up the draft of my next blog post - "Columbo and Vinny." It's coming together, but there's always a little more tweaking to get it just right.
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Hope that everyone had a great long weekend and Labor Day! I got to spend time with my niece and nephew and was able to take my mind off of things for a while until I am reminded that it is still there lurking in the not so back round.
Not too much going on this week, just a Lupron shot and bloodwork to re-check my neutrophils. They were low last week and if they continue to stay might need a dose reduction in Kisqali. Knock on wood the side effects have not been too bad so far, just tired but I am thinking they will add up over time. I hope it is working though and I can stay on it and will deal with the side effects.
@shanagirl I hope that your hearing issues get resolved quickly. The balance can be related to that if there are possible inner ear problems. That is no fun.
@emac I love the sneakers as well! Hope the treatment went well and you are not having too many side effects.
I want to say that I really appreciate this group. Everyone has seemed so supportive and helpful.
I have attempted to join some of the Facebook groups but they are a little overwhelming and have a lot of information and posts that make me more nervous than supported or just being helped in someway. I am trying to avoid them for my mental health sake. Sometimes easier said than done.
Hope everyone has a peaceful day and week ahead :)
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Keris~I hope that you can continue on your treatment with no side effects! The cancer fatigue. The big F is the main thing for me. I’m sending good thoughts that your neutrophils hold steady. Good to see you.
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Sunshine~ great information about the wax in the ears. Never know what works. Thanks for sharing my son has wax issues and has since birth.
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Haven’t seen Elenora or Denny in a long time. Hope they are ok.
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Sunshine, I hope your doctors have other treatment ideas than ibrance, I would be so reluctant to try it again after the last two times and everything that happened for you! I wonder if there's some ingredient in the coating of the tablet that your body is saying NOPE to?
Emac, thank you for sharing that photo, and I hope you are feeling okay after that treatment. I agree with the cool shoes comments, excellent choice for treatment!
Here's hoping for some pain relief for us all, physical and emotional. Thinking of everyone here.
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Waving hello to everyone. In pocket for scans and support. You are my second family and I appreciate this group of folks so very much. Thank you isn't enough.
My SIL rec'd a new liver today. She had suffered placental abruption when her daughter was born. They kept dumping bags of blood into her body to save her life. Unfortunately blood was tainted and she developed HEP C. After two rounds of treatment, she was not able to clear the HEP C and developed liver failure. I can't imagine being drained of 13 liters of fluid, but she has been every 3 weeks for the last year. We are anxiously waiting on a call to see how she is doing. Surgery was 6:30 a.m. She agreed to accept a liver from a donor with a rare genetic disorder that required the young man to take a number of meds. Frankly she was running out of time and this was probably her only hope. Prayers for the young donors family and SIL Janice, are greatly appreciated.
I'm going to cross post this next comment on Ibrance thread. Today I rec'd Pfizer Pat. Assist. Letter. Very concerning as to the new requirements for financial assistance. Starting Jan. 1, 2024, you must meet all eligibility requirements:
Have an annual household income at or below 300% of Federal Poverty Level, adjusted for household size. ****Patients who enrolled in the PAP in 2023 with an income above 300% and at or below 500%of FPL are eligible to re-apply for 2024.
Have a valid RX for Pfizer med avail. in the PAP.
Have a FDA-approved diagnosis for req. meds.
Be uninsured or publicly insured via govt.-provided insurance and unable to afford your copayment.***Public insurance includes , but is not limited to, Medicare, Medicaid, Champus/TRICARE and VA. If you are commercially insured (e.g., insurance through your job or through a Fed. Employer Plan) you will not be eligible to reapply.
Reside in the U.S> or a covered U.S. territory.
Be treated by a healthcare provider licensed in the U.S> or a covered U.S. territory in an outpatient setting. END
All I can say is this absolutely is awful news
Laurel
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After many weeks, I popped my head into the living room today. This thread is too fast paced to get caught up but I’m sending good vibes out to everyone.
Irishlove - special prayers have been said for your SIL. Thank God there are people like this young man and his family who still thought of others while grieving.1 -
Mel - I hope your back is feeling better. I have seen Eleanora recently on the clinical trials thread and bone mets thread but not here for a while. I haven't seen Denny in a while though.
Sunshine99 - I hope the appointment went well and you can find some relief.
Shanagirl - Here's hoping that the hearing loss is an obvious and easy fix.
Irishlove - What in the world? That is a terrifying letter. I hope that you are able to continue to get your meds. I feel like access to meds is just another hardship in an already hard to live with disease.
I'm glad the picture was helpful and thanks for the compliments on the shoes. I'm waiting right now to hear back from my MO's office. The last three days I have barely been able to sit up for more than 30 minutes and when I get up to walk around my heart rates are in the 120s to 130s. I've had nausea and vomiting for 3 days and I just feel really weak. I have no fever and other than a fast heart rate my other vitals are fine so I don't know what's going on. I'm afraid they are going to tell me to skip chemo this week if it continues and I'd really just rather get it done. My last CT showed new spots in the lung and liver that were "indeterminate" so I'm having an abdominal MRI tomorrow. Maybe that will provide some answers.
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Hi to everyone. Here's happy bees to brighten the day. There's a bee yard across the field so there are many visitors to my garden.
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Wow those flowers are beautiful! Thanks for sharing ! Have a great day!
Here is the latest Theo picture! So cute !
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So not the best visit with MO. Told her about the coordination issues. Her opinion is that it is likely some damage from the WBR after 7 years and that if so, no treatment available. Crying for a bit but still trying to tell myself not to worry. Sad about it all. Have
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Ohh Mara~ I am sending you hugs and as many thoughts as I can. I hope it will let up. Seven years is a long time. I know i I can’t be there in person. But I adore you sweet woman.
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Thanks Mel. I went through tears but am going to remind myself to go day by day. Just have to sleep, safe exercise and diet. Still need MRI to if anything shows. Need to be stubborn.
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I’ll be thinking of you and sending good vibes.
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Mara, sending hugs and prayers. You are loved!
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Theoooooooo… so cute!
emac - you are really, really getting the MBC beat down right now aren't you. It is the absolute worst when you think you have things under control but they start cascading in another area - like being diagnosed for the first time again and wondering where the bottom is. Also - no one likes a high heart rate, its really uncomfortable to rest at those levels, never mind move around. I hope they can get you some answers soon, even if it means more scanning and trundling around more than you would like to do.
Mara - you still inspire even if you can't get out as much as you could before. I check my steps throughout the day and start marching in place randomly 'like Mara would if she was waiting for the microwave!' because its important to move no matter how small. :) Im sure you will still find ways to do what you love and enjoy.
Nothing new here, its HOOOTTTT (90F) and humid/hazy; we are running all the laundry in the house because it will actually dry in an afternoon compared to 2 days over winter. Rugs today, cat laundry tomorrow, kitchen/bedding over the weekend. I've been doing 20 minute arm weight workout videos and some easy lower leg seated videos to build up my legs and overall strength - think I lost a LOT over the last four months and felt like I was walking on noodles. I wouldn't say its the most comfortable situation given the hip, but I've seen/felt some benefit both during/after exercise and the next day so I keep at it. Makes me tired/sleepy though!
And in exciting news only MBC sisters can understand, I got a new heating pad off Amazon that flexes around all my problem areas and is furry and adjustable temp/time and my favorite color and I love it so much.
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Mara - I wish I could be there in person for support. I can only imagine how hard that news was. Know that you are an inspiration to us here in the Living Room. Offering you as much pocket duty and virtual hugs as I can from here.
SondraF - I do feel a little like I'm being hit with the fire hose and trying to stand back up. I feel better today and was able to actually get outside and clean/fill the bird baths and put out a little seed for the birds.
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Hi - everyone. I have been lurking and keep meaning to set time aside so I can address as many posts as I can. Where does time go?
mara: I am so sorry that the news wasn't more positive.
Everyone else: Keep posting you pet, flowers, birds photos. They always bring a smile to my face
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Mara Sorry your visit was disappointing we can only imagine how it feels. We all love you and find you to be quite an amazing pillar of strength! You inspire everyone daily and yes have your pity party then get stubborn!!! Hugs.
Love all the pics💗
sondraf Enjoy that heating pad, sounds perfect. Turn down the A/C and wrap up with your new pad!
Hey elderberry nice to see ya😊
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Mara sending hugs. That’s a major disappointment to hear I’m sure. You’re strong and you do everything to get more strength so don’t stop. You’re an inspiration to us all with your cooking cleaning making soap and cleaning after your neighbors etc. take care dear. Sending hugs.
sondraf I take my heating pad with me on trips. Such a comfort for my aches when I lie down.
mel Theo looks amazing. He’s gotten bigger. Will he grow much more?
I stuck out my physical therapy even though I wanted to quit so many times. Just the drudgery of another weekly appointment and a half hour drive each way. Well, yesterday the doctor said we’re gonna wrap things up here in a few weeks. Wow! I guess I never finished the programs before bc no doctor ever said that before at PT. So I’m patting myself on the back lol.
Tanya
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