How long have you been Stage IV?
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@ssales13 Great to hear from you and wishing you well with the PET scan. ALways nerve wracking, but the drugs we are on are very, very good.
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@tougholdcrow thanks for the well wishes! Yes so true. Hope you have a great day!
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Hi all! @ssales13 Praying your results are stable or better!! ๐๐
Just back from a week in FL, needed a break from the cold and snow.
I suspect I have increased pleural effusion on my left side due to discomfort when taking a deep breath. Waiting for a chest X-ray to take a first look. My next scan/blood is scheduled for early April but now we may move those up. Iโm nervous but working hard to not panic. Other than this discomfort, I feel great. Falling on that every time I start freaking. A few tears leak out but then I move on. Iโve been do strength training, playing pickleball once a week and walking all the time. Keep calm, keep moving!
Iโm keeping tabs on you lovely gals! Iโll be in touch. xoxo juliana3 -
Hi everyone. I read your notes and am glad you are out there!
I remain on Truqap with fulvrstrant and xgeva shots monthly. My tumor markers continue to rise but my petscans have been stable thus far. I find the tumor marker numbers a bit frightening. Cancer is still in there percolating in my bones but I am still here. I find Truqap tolerable on the 3/4 dose. One of my biggest challenges is that I lost my husband of 35 years unexpectedly in surgery almost three years ago now. He was only 63. Doing this without him to help me and support me is really hard and honestly other than the people on this board no one else has any idea what we are going through. I miss him terribly.
I get injections every 28 days and petscans every six months. I am due for another scan in two weeks. ๐ค๐ป the results are good and I can stay on Truqap. Thank you for being out there.5 -
@nini69 So sorry to hear about the loss of your husband. I donโt know what Iโd do without mine. ๐ค๐ to you!
Like you stated, all of the ladies here are so supportive and encouraging. They always understand and give me hope.
Keep us posted on your scans. We are all in this together.
@eddiej Juliana, so glad you got out of the snow for a week. We have been snow-free here for weeks, but got a big dump last night. We need the moisture, so will enjoy it the best we can.
Pray your breathing improves and your scans are good. Always a worrisome time.@ssales13 Stacey, thinking of you today and sending positive vibes!
Hugs, Pam ๐1 -
@nini69 So sorry to hear about the loss of your husband.. Like @livinglifenow says keep us posted. We understand and are here to talk. @eddiej Juliana, Iโm glad you got to take a trip to Florida for the week.Im praying your scans are all good! @livinglifenow Pam, thanks for thinking of me! I just got home and Iโm waiting for results to pop up on MyChart. Will let you all know!
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@ssales13 Stacey, ๐ค๐ today!
Hugs, Pam ๐
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Hi @livinglifenow Pam, just got back from MO appointment. So I have 2 or 3 tumors in my left breast. The main one is not active and one hasnโt grown but the 3rd one has gotten bigger so I am getting some genetic testing done soon, going to see surgeon ( they are supposed to call to set up appointment) , getting another mammogram and blood work and also a skin biopsy because the radiologist said there was some thickening. The MO wants to get the surgeonโs opinion on just removing the tumors from my left breast. She just wants me to have minimal invasive surgery because of being stage 4. Sheโs not sure yet about a medication change. She said it depends on what they find out with everything above. Thank you for your prayers. I really appreciate them. Iโm really nervous.
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@ssales13 Stacey, sorry to hear about all the new things you are going through.
I will be sending you a private message. You should see a number by an envelope when you click on your user โpictureโ in the upper right of your phone. I have some information that may be helpful to you. It may take me a while to get to sending the private message as I getting ready for an infusion soon.
I did see my MO today and she agreed to switch me to tamoxifen. Hope I do well on it.
Sending more ๐and ๐ค. You are one of my favorite people and I think of you often.
Hugs, Pam ๐3 -
@livinglifenow Pam, thanks I got it! I appreciate it so much! I hope the tamoxifen works so much better for you. Thanks for taking the time to send it to me๐ธ
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@ssales13 Stacey, So so sorry to hear your results. Please know I am sending you hugs of comfort and prayers.
There is a whole world of treatments out there for us. When I met my MO he said that I am writing my own War and Peace and I am only in chapter 1.
Same for you sweetie!
Iโll be in touch.
XOXO juliana4 -
@eddiej The good news is that nobody can ever finish War and Peace, so you should live forever.
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I love this quote!
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@eleanora Thanks for the healing thoughts and Hugs I appreciate it. I see the surgeon next Friday so I should know more but I was wondering the same thing about the radiation. I had Hodgkinโs Lymphoma in 2008 and had 7 chemo sessions and 28 radiation sessions ( on the right) my tumors now are in the left breast. So Iโm not sure if that plays a roll in what they decide to do. Iโll let you know what they say.
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@ssales13 Perhaps cryoablation could be an option for removing your tumors? I am talking to a doctor tomorrow about this. It is much less invasive than surgery and less risky that radiation in my opinion. It's a newer technique so it isn't done everywhere. I will probably go to Memorial Sloan Kettering in NYC to get mine done. Best wishes.
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@chicagoan thanks for the info. Iโll ask about it. I hope your able to get it done.
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Which body part needs ablation? I went to MSK NYC for a second opinion when I was first diagnosed and they are excellent! Would love to hear about your experience.
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@eleanora I still have my primary tumor so my left breast would receive the cryoablation. Dr. Yolanda Bryce at MSK is an expert on cryoablation for breast cancer so I want her to do the procedure. No one in Chicago is doing it yet for breast cancer. I contacted Mayo Clinic but they would not do it for a tumor as large as mine.
I think this treatment could be quite ground breaking especially for early stage Breast Cancer. It is much less invasive that surgery and does not deform the breast like a lumpectomy or mastectomy. They have been doing it in Japan for almost 20 years. My brother will likely undergo cryoablation for a tumor in his kidney-it is standard for that kind of tumor.
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sounds amazing . Hope you're able to get it scheduled soon. Please let us all know the date so we can squeeze into your pockets. I was originally stage 2 and during the lumpectomy the surgeon damaged my long thoracic nerve. Despite years of PT and gabapentin, I have pain every day.
What an innovative alternative you've brought to the attention of everyone here.
Thanks
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Five years stable now, getting several side effects from the treatment at this stage, the 12 years of anti-hormonal treatment have caused arthritis, and I have joint pain and issues with very dry skin. On the other hand, I am here living my life.
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@sunnidays Congratulations on stable disease for 5 years. ๐ค Truly wish these drugs had fewer side effects. The aromatase inhibitors I was on caused debilitating side effects for me, so I stopped. Two weeks later 95% of my side effects were gone! I then switched to tamoxifen. Have only been on it for 4 days. Time will tell how I do on that, but I was on it for 5 years my first go-round with BC and did fine.๐ค
Have a great weekend!
Hugs, Pam ๐2 -
@sunnidays That is heartening news! Yes, the joint pain is wretched. I keep trying to stay ahead of it with Pilates, stretching, and massage, but it's an uphill battle.
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How is everyone in group doing? Spring has sprung here where I live. Some days itโs already too hot. Lots of the trees and bushes are starting to bloom. Golf season has officially begun. The first time I went out golfing I had to do a lot of walking and, surprisingly, my legs didnโt absolutely ache. I did have some sore muscles, but felt good and then I felt so much stronger and more balanced. So, a great trade-off. Hope all of you are doing well.
Hugs, Pam ๐
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@livinglifenow Doing pretty well! I'm walking a lot since I plan to hike a section of the Camino del Norte in Spain this summer, ending in a view of the total eclipse. Just assuming I'll be fine in a few months in order to do this. I'm inspired by @forza
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@tougholdcrow That sounds wonderful!
@livinglifenow Glad you are back on the golf course. I used to golf frequently in my twenties and thirties, then picked it up again during Covid. I need to make time for it-I do find golf very relaxing even though my game is so bad!
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@tougholdcrow Excited for you and your upcoming hiking adventure. Enjoy! Enjoy!
@chicagoan I just finished golfing 9 holes with DH and friends this morning. We played a 4-person scramble and finished 3 under. And, we had absolutely perfect weather!
I echo your sentiment: I really enjoy golfing even though my game is far from par! โณ๏ธHugs, Pam ๐
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Oh no you donโt : I did the Frances twice. The Norte has way too much elevation for me ๐ณ๐ณ๐ณ๐ณ๐ณ
Iโm going back in August but not for the full 800 k this time.
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@tougholdcrow also , I cracked some ribs , nobody knows yet if itโs cancer or the treatment. I didnโt even know.
The oncologist was in a right state ๐๐๐
In my heart I feel itโs the treatment and not progression. Osteoporosis and osteoarthritis runs in the family so Iโm leaning towards *no progression . Petscan June ๐1
