Best Of
Re: Poll: This time of year, what are you prioritizing?
Tests are showing there is little to worry about and there is nothing more I can do. My surgery is over, the chemo all done and insurance will help with radiation treatment next year if Kisqali and Femara can work on the rest. Since the plastics have abandoned me until after radiation is done I have to lower my expectations hunker down and get through this holiday. Hearing that symptoms like pelvic pain and thumb and finger stiffness are drug related and not cancer symptoms is enlightening. Since my creativity is stifled just being glad when I wake up from a sound sleep is such a good feeling and thoughts of gratitude in the moment just for feeling good are cherished.
Re: My Husband, My Life, My Love, My Family, My Cancer
@mara51506 That must have been quite a fright for you to have someone in your room when you were sleeping. Do you leave your front door unlocked? Good luck today at the hospital.
@irishlove Humana kept trying to get me to sign up for their cancer service but I resisted-they must have called me hundreds of time. I just didn't see a need for it and prefer to deal directly with my oncology team rather than getting their "advice." Good for you for getting all the sheets washed and changed. That takes some energy for sure.
Feeling much better now that it's been 9 weeks since my hip surgery. I'm able to stand for 7 hours in the cold so I am feeling pretty good. Still waiting on biopsy/blood test results to see what treatment change I might need. Probably won't know until early January when I have new scans.
Re: My Husband, My Life, My Love, My Family, My Cancer
@irishlove Oh no now the flu, ugh! Im sorry it’s been so rough lately. Ummm and I’m right there pissed with ya😡 really learn how to cope better??? MS and cancer oh yeah no big deal nurses, I’m living the dream… seriously! Continued prayers and healing vibes your way❤️
@mara51506
Oh geez your poor brother! Don’t blame you for not wanting to be disturbed while sleeping as it’s hard enough. Happy to hear your finally getting things started with your brain issue. In your pocket for scan, may you navigate the hospital smoothly❌⭕️
cookie54
Re: TNBC MBC Stage 4
@scgal08 sending love and light , and peace of mind as best as you can. Counting the breath 1-10 for 5 minutes can be helpful. Accept and relax, is the mantra. It’s always anxiety provoking setting up a new plan of any kind. Consder @cookie54 and I in your pockets for tomorrow’s appt. Let us know how it goes.
Finished my appts for this year. Lymphedema is already better, flare up resolving. Cmf + K are keeping me stable, Mets have retreated so far, amazing, just dealing with radiation redness and peeling .. but no nodules! I have a small one week extension on treatments , so go back Jan 7 for infusion and Jan 9 MSK follow-up. Even my Signatera results were lower, MSK mo was so happy.
It is chilly outside, but need to go for a walk and get eggs and apple sauce for biscuit baking …. Hugs to all ❤️❤️❤️❤️
Re: My Husband, My Life, My Love, My Family, My Cancer
@cookie54 Until this brain stuff is done, leaving phone on, did take off a couple notifications like the pedometer and the Walmart notification, will put it back once again for next delivery.
Slept most of the night deeply, bout 7 hours. Started coughing this morning but that is fine, need to clear out the chest. I am presently doing some cloths, will need find some warmer leggings to wear and check the walk, see if need to salt it a bit.
Unsure what to eat, should eat well pre hospital appointment today. I called the Paratransit too early but as long as there are chairs I can sit my butt in that is fine and will have earbuds for the regular phone and phone that plays music. I have ground beef that can be cut up and cooked. May cut into four portions or cook it all and split it later, not sure yet.
I hope everyone has a good day and in pockets for all. In own pocket as well since I do not know the hospital, was there as a patient but was always wheeled in a wheelchair except after the last brain surgery when I walked a circle when bored.
Re: Leg Cramps with Femara?.....
New to site. Triple pos bc, Her2 pos, stageII lumpectomy, 3 wks radiation at MD Anderson, Houston,Tex. chemo and drugs at NM Cancer Center in 2025.
So grateful to have all these comments after experiencing horrifying leg cramps which would not relent for about 5 minutes at 3 am and barely could walk to bathroom. Reaction to Phesgo every 3 weeks, 6 months. Grabbing some leggings, drinking more water and getting Dove soap asap. Bad reactions to estrogen blockers, Letrazole, exemestane and trying Anastrazole soon—double trouble with Phesgo. You've all been so helpful. I'll post any results from your suggestions. Thank you.
byebigc
Re: Newly diagnosed Stage IV
I hope you continue to find some relief along your path. May I ask, what led you to your PET scan of your sacrum and lower spine? You're the first person I've heard mention this.
I was diagnosed with degenerative disc disease shortly before the breast cancer diagnosis, and maybe the first 6 months after chemo my back felt a little better, or at least generally manageable. But over the last few months it seems worse. I wanna blame it on the weight I put back on, but I don't wanna ignore any signs.
Thank you for any input.
ejohnnie
newly diagnosed invasive ductal carcinoma case
Hello members. If anyone has been through this cancer let me know what is gong on? I am confused with surgeon saying remove the whole breast (mastectomy) or lumpectomy with chemo. I can not decide.
Re: newly diagnosed invasive ductal carcinoma case
Hey. Just thought I'd toss in my 2 cents. I waited and weighed all the details before deciding on which surgery (took me 6 months...). Looking back (I'm about 9 months post-lumpectomy and chemo), I feel like ultimately the decision of which surgery is really about how much you wanna look over your shoulder in the years to come. Chances of recurrence change based on sooooo many factors, and ultimately none of it is a guarantee. Maybe others have had a different experience, but for me, every itch, twitch, random pain, side effects from the chemo…(and the meds thereafter) makes me assume the worst. I often wonder if the mastectomy would've just given me one less thing to be paranoid about... then perhaps I'd have a good night's sleep (which i haven't had in probably 6 months or more dealing with meds side effects). I hope you find the right path for you.
ejohnnie
Re: Are you currently (or have you been) in a Clinical Trial?
Dear cureious, yes, our "baby" is turning 11 years old in two months, is 150 cm tall, living a life of a young careless happy boy, having his healthy mother by his side, isn't it amazing?
So, we are from Lithuania, a beautiful little country with really good health care system. My Sandra was in no trial - after de novo diagnosis and very dire situation she started THP (aka Cleopatra) protocol on August 27th 2017 at our National Cancer Institute. I also asked a few doctors "what else can we do" and one doctor from immunology department said "you could also try dendritic cell vaccine and cytokine induced killers (CIKs)". After already knowing what MBC diagnosis with liver full of mets means, we went directly for it. They took her blood after 1st THP infusion (we were in real hurry, as after 2nd THP infusion her blood numbers went really bad), and it took ~5 weeks to prepare the DC vaccine (everything is done here locally by one bio-tech company, they managed to make 8 doses) and CIKs. She really was a hero to go through 12 Taxotere-HP infusions and, to everyone's big surprise, got to NED in May 2018. Then right away, she was taken off Taxotere and left only with HP, and started DCs in addition. 3 shots with 2.5 mio, then 5 and 5 mio cells were administered weekly, then two more were administered in July and August respectively, these ones with stimulating alpha and gamma interferon. The 6th dose was given in December together with first CIK dose (1 billion cells), then 2nd CIK dose at the end of December, and third - in the beginning of January. She then had a relapse in January, but again to everyone's big surprise, in the same breast only. Went back to THP again (6 cycles). Everything was very well choreographed, and she never skipped HP/THP infusions. In June 2019 she got 7th DC vaccine dose. Then in July got a mastectomy without LN resection, as there were no signs of LN involvement at that time. Then in October she got her 8th (and last) DC vaccine, and in January 2020 - 4th (last) CIK dose. Then in 2021 through ultrasound they have noticed 3-6 LNs in her left side (same side as mastectomy) and performed a surgery to remove them, removed only 3, others were cyberkifed. A long story but… after December 2021 till today we had no more issues at all. She's NED in all her body. Last week she got her 142nd HP infusion, gets a thorough ultrasound every 3 months and chest CT scan+liver MRI every 6 months. Things have changed for us so much that our MO does not even see us, prescribes several Phesgos in advance and these Phesgo boxes that cost so much, lay in our fridge on one shelf together the eggs:)) She feels absolutely healthy: works full time, exercises two-three times a week, meets friends, participates everywhere where she wants, sleeps in tents, swims in lakes and the sea in summer, etc., and apart from some skin-issues (which happens when you are on HP for so long), I'd say her QoL is 100%. So this is our story…
For the end I wanted to share a few photos with you:
In our cancer journey went from this:
To this:
To this:
And to this…
And when I see these photos, when I see and hold them every day in my arms, I understand that every moment of my life, every struggle, every sleepless night, every tear and pain… was worth it. And that the future is not guaranteed for us but… there's always hope.
Your Saulius
bsandra