My Husband, My Life, My Love, My Family, My Cancer

moth

Thanks for the welcome, everyone.

I don't actually have a firm treatment plan. What I have is a several options and we're not sure yet which will go ahead.

Plan A is a clinical trial which is slated to open here in March. Atezolizumab + Abraxane + a 3rd drug/placebo. This is part of the ongoing IMpassion trials. I still have to qualify for the trial & the trial has to actually open to enrollment soon. The MO is wary about waiting too long.

Plan B is getting atezolizumab from the manufacturer, which depends on my tumors testing positive for PD-L1. Atezolizumab is available in Canada now but is not covered by our health plans so best options are to get it through trials or compassionate access from manufacturer but apparently they don't really want to give it out to non PD-L1 positive pts.

Plan C is just start chemo and give up on the immunotherapy but the MO really hopes we don't have to go that route.

Bone scan is getting done tomorrow. I've been on Prolia for just over a year & it's supposed to reduce risk of bone mets so I'm hoping for some good news there...

DodgersGirl

Moth— in your pocket tomorrow for your bone scan. I will bring M&Ms for all of us

And hoping you get the treatment plan you want.

BevJen

Moth,

Look at the website for Cancer Research Institute -- they are a group of physicians and researchers dedicated to immunotherapy for cancer. You might find some info there about immunotherapy in general.

Katedsweet1

Hello Sondra, I am new to this site, as far as responding goes, but I've been a reader for a long time. It might be that your leg pain, especially if it radiates down the back of the leg, could be sciatica

I've been stage four with mets to liver since 2016. I had a terrible bout with sciatica. Believe me, it's tough. I hope you get it figured out and that you feel better soon. Kat

mara51506

Candy, that is awesome. I bet you felt good after. You did amazing. I don't even jog myself. Good for you.

ShetlandPony

Can I just say we are one badass group of women here? We keep getting back up. We get knocked down. We get up again. We have all experienced so many losses, and grieve what we will likely lose in the future. But we try another day, to cope, to find something to enjoy, to help someone else. I love you all.

Moth, I remember you, I have seen you around BCO. I’m so sad and mad that you ended up stage iv. Hang out with us. You will move beyond the shock.

So having been re-hydrated and taken a drug break, I decided I would do some retail therapy. I tried some new stores in a new location and just puttered around looking for little things for my home. I took a break in the middle and had a nice bowl of veggie pho. It was a nice afternoon. I just had to go somewhere other than a hospital and think about something else.

My onc called. She has been sick. I will get a new trial nurse and restart using a gradual dose escalation.

Anonymous

Ugh - got an email from my brother this morning (he is 8 time zones behind, so I usually see it when I first wake up) and no definite answer yet. They are moving away from possible lymphoma diagnosis to secondary from another location, but they don't know what the primary could be. The core needle biopsy on his enlarged neck lymph node showed well-defined squamous cell carcinoma so its cancer... somewhere. He's in today for a PET/CT. He is 38 and not a smoker or drug user, three kids, speech pathologist. Not at an NCI center, but I told him to get a second opinion from one once they get some imaging.

Its pretty hard to sit here thousands of miles away and have to see a family member go through all the testing and unknown like i had to - I wouldnt wish that on anyone.

LoveFromPhilly

hi good morning everyone,

Sondra I am so sorry to hear about your brother! Being so far away really makes it harder. There’s something about being with people in person that is comforting. Just to be able to offer a hand, or share a laugh or a cry together. I am sending positive visions that they are able to figure out exactly what is going on with him and get him on good treatment right away.

Moth - ugh I am so sorry you have joined us. I too have read your posts in other threads and I have always appreciated what you share. Sounds like some decisions need to be made. I am rooting for you and your team that you get the best possible care that your body needs right now to ward off the cancerous activity!

I am sitting in the pre-petscan chair right now drinking the oh so delectable orangesicle barium drink and glowing from the radioactive injection. I think I’ll be getting scanner in about another hour here or sooner. I’ve lost track of time. I am feeling calm, the fear-voice is quiet. I feel optimistic and hopeful that this long-awaited petscan will show that, at the worst, there’s been a mild and slow progression. At the best, that I am more stable than before.

Please feel free to jump into my pockets if you are free! My stomach is GROWLING and I am so ready to munch on yummy treats with all of you!

My MO said that the results may be available by the end of today! He will call me. I’ll let you know how it goes!!!!! Fingers crossed 🤞🏽

Love,

Philly

booboo1

Philly,

I’m here reporting for pocket duty. Stay positive, and think good thoughts. I am ever hopeful for a good outcome. You are strong and take good care of yourself, so chin up! I’m praying for outstanding results for you!

candy-678

Morning all.

Philly- In your pocket with cinnamon rolls. Sticky. Hoping for good news later today.

Moth- In your pocket with... Peanut M&M's. You don't have a peanut allergy, do you?

Mara- Everyone talks about the high from exercise. Not. I did push it yesterday on the treadmill. I do not exercise and had not been on the treadmill in almost 2 months. I was venting my anger of the cancer, had the music loud and just pushed myself. But after, I was hot, sweaty, and aching. I feel asleep in my chair a little later. My joints still ached and I felt like usual. I need to get into a routine with walking and keep at it--but not at the pace I did yesterday.

Shetland- Glad to hear they are letting you continue with the trial but at a lower dose. Hope you can tolerate it and it kills those cancer buggers.

Boo- I hope you stay illness free the rest of the winter/spring. I wear a mask to stores and use bleach wipes on the cart handles. So far, so good. With the coronavirus, I wonder if we will have illnesses year round soon-- flu season is now Sept thru April. Soon flu season will be year round too. Germs, germs everywhere.

BevJen

Philly,

Sending good vibes your way. Hope the PET scan goes well, and that the results are good.

LoveFromPhilly

thank you so much my friends!!!! I feel you!!! ❤️😘🌈😘❤️😘🌈💕🌈😘❤️🌈💕💕🌈❤️🕺🏽🕺🏽

Anonymous

Ive got another garlic bread in the fridge and a new nacho cheese recipe, so I can hang out in the pocket with those.

Good luck Phill!

illimae

Morning, off to H&P treatment but jumping in pocket duty too for scans and PETs 🙂

mara51506

In your pocket for pocket duty philly.

Sondra, I am sorry about your brother. Sending my thoughts and strength through to you. You better hide nacho cheese and the garlic bread. I will devour them

Candy, going slow is just as good. I only go just under 3 miles per hour usually 2.5 to 2.7 on the treadmill. I never jog. 1.5 to 2 miles an hour are good for a beginner and actually require more muscle to maintain stability.

Micmel

reporting for pocket duty Philly Love you girl! And your quiet voice. We are all with you. Please know we wish you tons of stability!!! Go Ibrance !! Hugs to you my friend...

Micmel

Mae~Waving to Mae good to hear you’re moving along with your treatments! You ladies are something else

Sondra. I am also sorry about your brother! The miles always make us feel helpless in what we are able to do to help or support. I know my time will come with my mother. I lost my father in May of 2019. So I’m afraid when she starts to loose steam. I won’t be able to be there. She lives in Mississippi! Far far from me !

DodgersGirl

Sondra— sorry your brother has to go thru this crap and that you are so far away. Will keep you both in my thoughts.

Philly— jumping in for pocket duty. I brought Fritos (cause I was craving something salty and crunchy. Far from the jello from hospital stay for me)

Illimae— hope today’s treatment is uneventful SE wise but that it kicks C butt

Candy— I sold my treadmill last summer. Guess I am going to have to clean off my Gazelle glider and just start doing some kind of moving. Not sure how many steps I can do now but the key is to move. You and Mara are a great ins

candy-678

Mara and DodgersGirl- I have a basic treadmill. Nothing fancy. Power button to turn on and the stop button. Basic readout-- calories burned, how far walked, and speed. Mine are in speeds of 1, 2, 3, 4, 5 miles per hour---nothing in between. 1 MPH is a stroll, 2 is a brisk walk ( I cannot keep up a conversation and walk 2 mph-too breathless ), 3 is when I am jogging to keep up. Never tried 4 or 5---would probably be thrown off the thing !!!! Right now I do 1 mph stroll to start, to warm up, and then alternate 1 and 2 for the rest of the time. Yesterdays 3-jog was because I was angry and letting off steam. Try to walk 20 -30 minutes at a time. Dodgers- I had a Gazelle glider years ago--sold it to a co-worker since I was using it to hang clothes on. Hahaha.

mara51506

My treadmill is also basic. I got a Bodycraft Space walker because it takes up a very small amount of space when folded. It does not do any incline or fancy things either. Same sort of buttons available. Goes 0.5 to 4mph which is faster than I want to go. I also hang on to the handles as I tend to lose balance on a treadmill. Balance is not a problem outside though.

Walking wise, did 30 mins first thing on the treadmill. I had a home visit with my case worker then decided I wanted chocolate and garlic bread. Walked outside for over an hour. It is more strenuous since I am lifting feet more, it still feels like a march with longer strides but so far, it seems doable and easier.

candy-678

Ok Mara here is my update for my Treadmill today.

Just finished walking. 20 minutes. First minute or 2 was 1 mph stroll to warm up. Then 2 mph fast walk for 16 minutes. Then 2 minute cool down at 1 mph. My Left hip, both knees, and both ankles screaming at me. The rheumatoid arthritis? This is NOT fun. But I know movement is good for me.

Oh, and by the way, looking at my Treadmill, it goes up to 10 mph. That would fling me into my next door neighbors living room !!!!!!!!!!!!!!!!!!!

I hate exercise.

mara51506

10 mph is such a fast run. I am with you, even if mine could go that fast, there is no way I could manage that. Going slower is also better on joints anyway, yours will improve once you get used to it. Stretching is also good. I like putting a leg on my other leg and press down to get a good hip stretch.

I will say that I don't particularly LIKE exercise, but can see the benefits for my mental and physical. I also like the music I listen to as well. I walked an hour just to get chocolate and garlic bread I like. That is getting easier with the exaggerated lifting of both legs. I seem to be adapting well to it. It is more demanding because it creates a shorter stride, therefore more steps. Don't know how many. I do feel much safer that I am not going to stumble in the sidewalk cracks though. I also plan to walk to my cancer clinic appointments since it will wake me up some (they are early).

I still find it hard to get motivated, takes a lot of internal berating to get off the couch but I am lucky to have any sort of strength and need to not squander it away. There will come a time when I don't have it and will miss it.

Candy, I am still quite proud of you to continue doing it. We will do things together.

Micmel

I want a treadmill!

santabarbarian

You guys rock! Yes, exercising has so many benefits-- especially when it's hard to do.

Micmel, I got my elliptical machine on Craigslist! You may want to ry it!

mara51506

Mel, a treadmill is a good thing to have to start building more strength and stamina. I got one that suits the space in my little apartment. They are well worth it whether you get it used or new. Keeps legs strong and energy level better. Helps mentally too.

candy-678

Mel- I got my basic treadmill on WalMart .com and it was $300.00. It folds up, but I keep it in a spare bedroom and just keep it unfolded all the time. I had a friend help me put it together-- legs and handles--as it was too hard to do alone.

Karenfizedbo15

OK ...not been here for about a day and already way out of touch!

Mae, you seem to be on the mend at least a bit... onwards...

Candy, you appeared very down but have had support here and also picked yourself up a bit. Now sounding more positive I think. Hope you realise we all do read even if we don’t pick up right away.

Shetland ...you too

Mel and Intothelight. Lovely comments and also realistic as always. Keep on rockin’

Anyone in the wee motorhome community? Thinking about buying an old one with a bit of my lump sum. Always been an outdoor person so this is a next step. Sub 6m, 4 berth with washroom is the plan so far!

Any advice gratefully received ... plus the research has kept me off the cancer sites for a while!

illimae

Karen, DH and I love our travel trailer. I don’t know how helpful I can be but I’m happy to answer and questions.

Micmel

Kate~I wanted to welcome you to the thread. I hadn’t seen you post here before and wanted to say hello...I know I have had some sciatica pain that would stop a train. Awful. It’s always nice to see a new face in our living room. Hope to see you again.

lilyfrombeppu

I've posted this in "How About Drinking". I've been visiting here daily since my diagnosis last May. but I'm a slow thinker/ writer and it takes me a long time to respond .

For the past 16 years my DH has been the one with the medical issues - diabetes, 13 years of dialysis, legally blind, heart attack, neuropathy in hands & feet, various broken bones (elbow, both ankles), leading to depending on a walker or wheelchair and me to get around. I had to retire from teaching 5 years ago (at age 64 ½) to become a full time caregiver. Last spring he developed gangrene and gradually had all the toes on his right foot amputated. While he has healing from that, he ruptured his Achilles tendon and fractured the heel of the same foot. After many months it still hasn't healed & is infected so I've acquired many nursing skills. I'm giving you all this background on him so you can see that my Stage 4 cancer (with mets to lungs) diagnosis is pretty overwhelming for both of us. I had gone years and years with nothing more serious than pneumonia.

My treatment has been Femara and Verzenio (150 mg twice a day) - - no chemo or radiation. The side effects have been mostly diarrhea, fatigue, metallic mouth, mouth sores, thinning hair and headaches. I've had shortness of breath and rapid heartbeat, but an echocardiogram/ nuclear stress test last month showed no heart problems. I had a brain MRI a few weeks ago to see if my daily headaches are stress- related or something worse. Nothing major showed up but I couldn't have the contrast dye because my kidney function had dropped in the last 3 months. Several other Verzenio people had also indicated they have experienced this.

I had cataract surgery on both eyes in November and enjoy waking up and being able to see with fumbling around for my glasses. Unfortunately, I had a retinal tear and had some laser work to repair that. Now I have a floater that will need to be removed next week since my vision is being affected.

To complicate matters even more, I am the executor for my mother who passed away in 2016. With the help of my sister & brother, we FINALLY emptied and sold the house a few months ago. Mother tried to set up everything in advance, but the house was full of 50+ years of living — so much stuff! Mother was Japanese so I have bins or antique Japanese items as well as dozens of kimonos/ homemade quilts/ afghans to disperse. My goal is to wind up the estate in the next 2 months which will really relieve so much stress.

I feel comforted & informed as I read your entries. I will apologize in advance that I will not be a frequent responder - - I still have Christmas letters that weren't sent!

Hugs to all!