Bone Mets Thread
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Great scan results Z, go celebrate!
Mel, do you go to Mayo? I do and went to their financial services office and they got me a coupon for Ibrance. My copay was 10.00. You can also go online to Pfizer and they can help.
Happy weekend everyone!
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Great scan results Z, go celebrate!
Mel, do you go to Mayo? I do and went to their financial services office and they got me a coupon for Ibrance. My copay was 10.00. You can also go online to Pfizer and they can help.
Happy weekend everyone!
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I am in awe of any woman who is able to work through having breast cancer. You're amazing people. There is just no way I could do it. I have other conditions as well that cause me additional problems. I only breathe on one lung and that makes me sick a lot. It always scares me when everyone has to rely on employer insurance when they have cancer. It's a tough thing to work through. I just worried all the time I would get too sick to work and loose my benefits. I had filed for disability years ago for an unrelated accident but now that I am sick with cancer. There is no way I could ever ever keep anyone else's schedule but mine. The thought even exhausts me. So god bless you strong ladies! Hats off to all of you amazing women! Hugs and good wishes for strength and a cure for this crap! ~M~0
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Bigbhome. I dont go to Mayo but i will check out the copay card. Im waiting on Cvs specialty pharmacy to call me and set up delivery. Thanks everone. Im scared about relying on my job for insurance too. But Im learning to calm down some and just take it as it goes. Hugs to al
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Kaption, thinking of you and sending positive vibes your way!
Babs, the pictures are incredible and your daughter is absolutely stunning, just like her Mom.
Zarovka, those results sound great! My MO said that even healing lesions will always show up on scans. My sternum mets were sclerotic from the beginning.
Lita, you're amazing! Praying the rads get all of your pain under control.
Bluefrog, so happy to see you pop in and hear that you're doing well. Thanks for sharing the pics, they're beautiful!
Love and hugs to everyone, Annie
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Patty, I'm so happy to see you posting. How have you been feeling? You said you're moving and mentioned ex hubby, I'm sure I've missed something somewhere. Sending you all my love and big hugs!
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Anyone heard from Momallthetime? I'm worried about how Dani is doing.
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Lita I have not seen a post from momallthetime since April 12th. I sure hope everything is ok.
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I've been looking for her too. Tracked her to the liver mets page. She said something about having to also take care of an uncle. But, that was over a week ago. I've been worried too.
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I speak to Momall and Dani is about the same. She's just been consumed with her uncle who's sick. I told her the liver mets people were worried about her. Now I'll tell her you all are asking about her and Dani.
Bab
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Mel, if you have regular health insurance, Pfizer offers a $10 co-pay program for Ibrance called the Pfizer Co-Pay One Savings Program. It's very easy to get. Just follow the instructions in the link below, and when your specialty pharmacy has your RX ready to ship, give them the i.d. number Pfizer will give you. It will knock your co-pay down to just $10.
Here's the info: https://www.ibrance.com/financial-assistance
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Thank you Dlb. I will sign up.
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Thanks all for your awesome support and congratulations. As a rule, I do not worry about minor issues in scans. They just aren't that accurate. It's a great scan.
However, I do like to learn and have these apparently contradictory facts presented in the scan.
- Sclerotic (healing mets) ...
- Consistent SUV of about 2.5 over the course of a year.
Do sclerotic mets light up in PET scans if they are not actually cancer?
Is an SUV of 2.5 actually hyper metabolic anyway?
I am interested in whether any one else has had healing bone mets that were even marginally hypermetabolic.
Corresponded with mom a bit. No real crisis, she just spending every free moment up on bladder cancer as she has another person close to hear dealing with that.
>Z<
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Thinking of you Caption and hoping for great news on Monday.
Super great news for you Z. All the hard work you put into it is paying off.
Wendy, You really pull off the short hair very well. I have protruding ears and will look like a weird mouse I'm thinking....
babs, Those wedding photos are fabulous! They do look like a magazine spread!
Thinking of you everyday Lita and hoping the rads did the trick.
Patty I hope you find just the right new nest for your new stage in life. So glad to see you up and feeling better.
Nice seeing you again Bullfrog. Your family always makes a darling pic.
micmil, working is the only thing keeping my mind occupied enough to stay sane through all of this. But it gets harder and harder as the year wears on. I have a scan coming up mid-May, TM's are going up and feeling more twinges for sure. Think it may be wise to think about "retiring' soon.
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it seems to be that the end of April and May are the scanning months for most of us. I know I am set to scan Friday. Not really looking forward to it. The regular fears creep up again. I would be ok never to scan again, but realize that's isn't too good. Have a good weekend all! ~M~
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JFV,
A lot of us had pain before diagnosis that we blamed on exercise, age, or bad karma. It is funny that once I knew the cause of my pain, it became much worse for me. I believe I would be called a "somatic" patient, in that my mental awareness of cancer increased my experience of the pain.
My doc knows that I need to shut the pain down, as it messes with my head, and he is cool with prescribing what I need. It took a few months to figure out what med, and what dosage I did best with. Too much, and I got loopy. Too little, and I was a whining mess.
Get with your medical team and be very frank with them as to what you need. Pain interferes with our quality of life, and there are good meds out there that will address it.
While you are figuring out the "new normal", experiment with heating pads and ice packs. I use both on a daily basis. My favorite heating pad is a heated throw that I can wrap over my shoulders. I've also learned you don't have to spend big money on ice packs, as the cheap ones seem to be just as good as the expensive ones.
The whole body pain you periodically experience is a new one for me. Maybe it is your body mounting some sort of immunological response to the mets?
Welcome to the club no one wants to join. I hope that you find comfort soon.
Jennifer
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JVF~ don't suffer if you don't have to,. I know exactly what that back pain feels like. Like someone is chewing on my lower back deep inside my bones. Bending over sometimes is more painful then stubbing your foot ona metal frame, except it doesn't stop. Somedays I just don't know how i ended up here. I was always the strong one. Never weak. Now I feel weak. Gentle hugs ~M~
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Yeah Z that is super awesome I couldn't be more happy for you . Glad you got the results so quick too ( well for Canadian standards that lightening quick lol) though any kind of waiting sucks. You are doing something very right😊.
Babs it looks to me like a dream wedding such a beautiful group of people. Your daughter looks so happy wonderful. How are you handling Taxol so far?
Patty it's so much fun setting of a new home. I moved in March and got rid of a lot of baggage that I'd been dragging around for years so much stuff. Donated a lot of stuff now I feel freer . Good luck
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Wendy-I'm already off Taxol and onto Gezmar. My last scan showed mainly stability or regression but there were 3 spots that increased- 2 in my liver and a new spot on my L1 . So, the oncologist decided to switch treatment before I get into a bad situation. I had my first Gezmar Thursday night and all seems ok at this point. The protocol is 2 weeks on 1 off. I actually found Taxol ok aside from the hair loss. Just wish it would have worked for longer! I hope it works its magic for you for a VERY long time!
Babs
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Thanks Micmel and Blaine Jennifer. Funny you mention my immune system. I was actually diagnosed with CVID about 6 months ago. Turns out some of my immune system has stopped working. I get an infusion of gamma globulin once a month. It does create some aches and pains I assumed my mets were part of my immune problem
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At the San Francisco Start Up Art Fair. My dd is working this event as part of her internship.
GLORIOUS DAY in SF. Person laying on ground is a real life piece of art work.
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Lita, so glad you got to spend some time in S. F. That is my favorite city to visit in the U. S. In San Fran you are within a one hour's drive from like 7 different climates. It is amazing.
Sitting here in a hospital room watching my princess sleep. We thought she was improving steadily until she became hypervolemic from all of the I V fluids they ran through her for almost a week.
Her liver is not producing a critical protein that alerts the kidneys to all the excess fluids in her body. It's as if her kidneys are blind to that fact. The human body is so incredibly complex.
Now, we are trying to pump in all the protein that we can to hopefully "wake up" her kidneys. I'm afraid this is going to take a while, and we've been here 8 1/2 days already. We may be here another week :-(
Fortunately, she is not in any pain. Just very weak and having some difficulty breathing.
Powerlessness sucks.
Louis
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Louis. ~ watching my princess sleep 💔 God bless you both. I am keeping you in my prayers. Always. I am so sorry that you're feeling helpless. But you are there with her, her rock, her other half. Such a good husband. Keeping you close in prayer! ~M~
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Louis,
I echo what micmel said! Your princess knows you are there. That's power! Prayers!!
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Prayers for you both Louis!!
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Louis...MAJOR PRAYERS going out your way.
Thank goodness I brought my wheelchair with me. The Art event didn't have hardly any chairs, and my back is still achy from Rads. There is nothing more sublime than a nice sunny day in San Francisco. Very rare indeed. Of course, driving in and out of there took twice as long as we thought. Here's another shot from the event. They rented the entire hotel, and each hotel room had a different artist and their work.
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waving hi and sending hugs to all who want them.
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Thanks Patti - I'll take a hug from you for sure.
Louis - Prayers for both of you. I hate being in hospitals so much. It would so be disheartening for me to face another week when I thought it would be over. Please take care of you. Remember that your princess needs you whole, healthy and upbeat.
Wendy - thank you for thinking of me. I am doing something right, unfortunately I don't know what. The improvement over the last 4 months corresponds with several changes to my complementary routine, but my understanding is that it could just be Ibrance kicking in. Watching closely on updates as you battle your way through taxol. I am so proud of you.
Lita - You rock a sunhat for sure. I hope that guy/art piece was wearing sun screen or he will have the weirdest burn ever tomorrow.
Long day - sent 200 middle schooler home from denver and went to the aquarium.
>Z<
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Adding my prayers tonight for KD. I hope Lulubee's inspiring and savvy post a couple of days ago will give you both hope that there will be better times ahead. And as Micmel said, just being there is very powerful.
Good for you, Lita, for getting out even when your back is hurting. And I agree, you really rock that sun hat.
Glad you survived the field trip, Z.
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I'm also sending prayers to KD and Louis. You are really her rock!
Lita so glad you had such a great day in SF. And love how you look in a sun hat!
Z. Wow. Sounds like a long day for sure!
Bab
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