Best Of
Re: Bone Mets Thread
Had my kyphoplasty last Wednesday. All went well, although I have a little more pain today in the ribs just below and to the right of where the procedure was done.
I was told by the Vascular Interventional Radiologist who did the procedure last week, that I am going to need radiation treatment to T12 to completely destroy any cells that the ablation did not take care of. When I mentioned it to my MO, she said that she would want that to only happen on a week before an Enhertu infusion. That would mean either the week of 8/4, but since I can't get an Thoracic and Lumbar MRI done before 8/1, that is not going to work. That means waiting till the week of 8/25, in which case I am wondering if I should wait till after my infusion on 8/12 to do the MRIs.
Has anyone on Enhertu needing radiation ever heard of that restriction from their MO?
Re: Birads 5 with calcification
@Lisat8228. We are happy to hear that your surgery went well this morning. We will be keeping you in our thoughts as well for your scans.
The Mods.
Re: Can we have a forum for "older" people with bc?
Carole, I miss my hollyhocks. It’s been years since we had them. I might have to look into getting some seeds. After the bloom dries out, the pod is full of seeds. If I recall correctly, they’d hurt my fingers pulling them apart. You may be able to get some seeds from your neighbors to take home with you.
I’ve had a heck of a day. I thought I’d run a few errands that just turned into crap.
My third stop was the Walmart Super Center garden area. When I got to Walmart they had 40+ parking spots for “pick up” customers. I got an ok parking spot, not too far away, hobbled up to the garden area and they had the gate locked. I just turned around and hobbled back to my car. I was looking for gay feather, which was available for pick up from there when I looked last night.
Next was the bank to wire transfer money to purchase the car for my grandnephew. Teller just wasn’t the sharpest, and he tried to give me a cashiers check, when I had the other banks routing number and account number in front of him where the money was to go. So he took the money out, plus a fee for a cashiers check, then had to put it all back in my account. I ended up with a banker in one of the offices. I was there over an hour! But the money has been transferred, and now we await a Fed Ex package with all the paperwork to register it, and keys too. I think I’ve mentioned it’s my SO, brothers ex FIL, who passed away at the beginning of July. His widowed wife is going into a dementia assisted living facility, daughters are facilitating everything for the sale of his car.
I came home wore out and hungry. Partner let me know he got his Covid shot today. I thought I better not. Haha my day wasn’t going well and I was not going to push my crap luck with that.
cindyny
Re: Bone Mets Thread
Hi all,
I’m looking for some guidance about how progression with bone mets is handled and when treatment changes are made. I’ve been aware that I have bone mets for three and a half years, and have been stable on pet scans (until now). My pet scan results were posted in my patient portal, and I don’t see my doctor until later this week. There are 2 spots that we have watched since my MBC diagnosis that have fluctuated in SUV slightly. However, the latest report shows one of them tripling in SUV value, and the second one more than doubling. In addition, a new met is showing in my spine. It’ s likely that the new met has been there but was not detected on PET scans until now. I say this because only 2 bone mets have ever been visible on Pet scan, but an MRI done when I was first diagnosed showed innumerable bone mets. Regardless, the report makes me think the cancer is starting to wake up.
Any thoughts about what I should be asking my oncologist at my appointment? I’m currently taking exemestane and Ibrance, and I’m guessing this is enough progression to cause a treatment change? Anybody have a similar report, and stay on their current line of treatment? I had an adverse reaction of kisqali so that’s out. I’ve also not had xgeva or zometa in over 2 years – it’s a long story but we decided to take a break after the kisqali issues, but maybe that needs to be reconsidered. Would you ask for a specific liquid biopsy at this point? I just want to make sure I’m informed enough to ask the right questions, and appreciate any suggestions. Thanks so much!
mc22
Re: My Husband, My Life, My Love, My Family, My Cancer
Thanks for all your comments.
I was not talking about myself. I have a local friend with MBC. I was talking to a mutual friend of ours, and he said that if her cancer is stable (last report we got) and she goes off her meds, she will be ok cancer wise. She is having other issues right now that I cannot get into and she may have to pause her meds. Long story. I was voicing my concerns to him about her stopping her cancer meds. He acted like he knew more than me (someone that has LIVED with MBC for almost 8 years). I am a little frustrated with him right now.
Re: My Husband, My Life, My Love, My Family, My Cancer
Hi all. Yay Candy for stable scans. But keep taking those meds to try and stay stable (I know you know that). Someone needs to tell that friend there is such a thing as Google or American Cancer Society. Our appliance repairman told me to take dog and cat de-wormer and it'll cure Stage 4. He knows someone that knows someone. His response after I disagree is "what do you have to lose?". Oh I don't know, my intestines, maybe.
Mara, my DH invested in a combo washer/dryer. I thought it would be great so I would not have to unload wet clothes and lift to dryer, especially when MS is hitting hard. My opinion is the machine takes way too long to do the work and is complicated. We don't have a book from the manufacturer. Waiting on it for 2 months and we called/written frequently. The simplicity of your machine sounds much better for my aging brain.
Haven't gone out due to the horrendous heat, so DH just picked up a couple ready made readers. They'll do in a pinch. I developed diverticulitis again this week, so I'm off Ibrance for one week whilst taking another antibiotic. Odd it is called Amoxi-Clavin, 850 mg and 325 mg. Different name for Augmentin. This amoxocillin does not sicken me like plain Amoxocillin. Maybe the fillers are different. Each day brings a new day of battles, but then I walk into my garden and God's gifts bring such delight. No doubt I wonder if I'll know when to call it a day or a life, but I guess it's not here just yet. Couldn't imagine 23 yrs, but then again I fight MS daily. I call it a noise in the background, but sometimes it just blasts it's way thru to the forefront. It's complicated with autoimmune diseases and cancer. I stopped guessing what is causing what symptom. I ask for God's strength and grace to carry on.
Gotta get some sleep, appt. tomorrow for Xgeva and either blood work or the dreaded shots to the butt.
May you find peace in your day and I'm in pockets for those in need.
Irishlove
Re: ER-, PR-, Her2+ Roll call
This makes me really very sad, girls 😭 Deep down I always had hope that some recovery was possible. Lately I started to get seriously worried about what you @grammie2 were describing to us, but I never wanted to believe the worst. I hope her husband holds up and has someone with him now, he’s going to need it. Lots of strength and courage to the whole family. As for Berta, it was a pleasure to meet her and talk to her, and I only wish that she doesn’t suffer 🌼💟
Re: ER-, PR-, Her2+ Roll call
oh no! @grammie2 I was concerned about this as her updates have been disappointing. I am glad to know I will meet her in heaven as well. This is just totally heartbreaking. The Lord be with her and her family. This is so very sad and has me weeping. Thank you for sharing her updates.
Re: ER-, PR-, Her2+ Roll call
Hi ladies. I wanted to find Berta's last post on her where she explained what was going on with her. My update today was not great. As soon as tomorrow they will be transferring her to a facility in a hospice situation. Her cousin explained that her lungs and liver were not improving with any of the treatments and only a transplant might prolong her life (but she doesn't qualify for a transplant). I know this was such a difficult decision on her families part. Her husband has not left her side this entire time! Yall I can't even fathom that kind of love and devotion.
I pray that Berta will be comforted in this transition and she will be at peace, and the same for her husband and children. I just couldn't hold back the tears and told my husband that I never got to meet her. His response with a tight hug was "You will". I can't tell you how grateful I am to have that blessed assurance from our Savior. Our faith was something that Berta and I did discuss and I am so thankful for that sisterhood relationship we had even though we had never met in person.
I just can't tell you all how sad this makes me. While what happened to Berta is not common, so I hope anyone who reads this will understand that fact. And I can just about bet if Berta was able to talk with us right now, she would say the same…..that this is not the norm. Love and hugs ladies!
grammie2
Re: A 1st ultrasound report suddenly worries me!
Lupron is hormonal endocrine therapy, designed to suppress your ovaries so you can take that aromatase inhibitor, aka an A.I. (aromasin) to inhibit estrogen production because your tumor was ER+ .(A.I.s are more effective than tamoxifen at preventing recurrence because they "shut down the estrogen factory" rather than just block the receptors, without the risk of blood clots that tamoxifen can carry). Anything that affects your estrogen production is going to exacerbate emotional stress and inflammation (hence your eczema flares). These effects should lessen over time once yoyr body adapts to the dose regimen,
Your doc was correct in refusing to radiate your armpit, because all nodes were negative—both on the ultrasound and sentinel node biopsy. (If it ain't broke, don't fix it). Your tumor was Grade 1 (well-differentiated and slow-dividing). Here in the US fewer and fewer docs are running Ki67 levels on tumor tissue, because the size, grade, and negative nodes in such an early-stage cancer (still Stage IB or IIA at the most) plus OncotypeDX or Mammaprint results are more accurate and predictive; you have an excellently low OncotypeDX score and extremely low recurrence risk. And surprised you got a PET scan. It's expensive and usually ordered only if metastases are suspected. In early-stage cancers what "lights up" is likelier to be areas of inflammation (or healthy cells with an uptake of sugar); it causes more anxiety than good. (11 years before my diagnosis I had a PET scan because of a painful "fragility fracture" (occurring in the absence of any trauma, for which I was statistically to young to have gotten). So the orthopedist was trying to rule out bone metastases from a hypothetical tumor somewhere in my body; instead, what lit up was an area of inflammation at the site of both the fracture and a harvest of hipbone to more securely install hardware in the leg I'd had shattered by a car bumper 8 years before even that. But that weekend between the PET scan and the results was extremely nerve-wracking (not the least because I was also awaiting brain MRI results due to a sudden sensorineural hearing disturbance, for which the neurotologist wanted to rule out a brain tumor, blood-vessel malformation, or other anatomical anomalies).
Just relax, take your meds, examine and periodically image the other breast, get bloodwork done and see your oncologist periodically. And as the old blues song goes, "don't go lookin' for trouble, trouble will find you."
chisandy