Best Of

@intolight

So sorry about progression. Sending virtual hugs and prayers your way.

@mkestrel

Sympathize on the hair loss. It seems so cruel to have a side effect that makes our suffering public. My hair is very thin from 3.5 years of Kisqali. Would love to wear a wig, but afraid it would terrify my toddler grandchild who has only ever known me with thin hair. Cure-ious posted something on the Clinical Trial thread about UCLA and a serum for baldness. Wish they would hurry and get that approved! NYU Langone has published results of a study specifically on the successful use of oral Minoxidil by breast cancer patients.

@goldensrbest

Sending them your way now. I know how you feel - this disease has trained us all to expect the negative.

Please keep us posted.

💕

ACETABULUM - LABRUM

.@threetree Oh girly girl I’ve missed you. This has been a bad season for so many here. And you are very much like me in the way your bones and muscles react to barometric weather changes with in coming storms and temperature changes. Your new liver met diagnosis had t be a real emotional and strength draining occurrence, probably more than you realized. The stress of it would be normal to cause brain fog, and low energy like depression.. I too did also love the candle thing and I lit one last night inside my glow rock sea glass jar and it was so pretty and Ipeaceful even though the candle is a battery tea light candle. It made me feel very calm and connected to you all when I said a prayer while holding it. @threetree I too have not felt well since the summer with all the scans and tests and procedures for what they were finding on the scans, it was stressful and exhausting traveling back & forth to appointments and dealing with bronchoscope & pneumonia during the summer, going for the neck radio frequency Ablation procedure, and follow-ups and PT. Then my last scan showing the cause of the hip & groin pain was a new metastatic lesion on my Acetabulum. They sent me for 10 days of Palliative radiation to my hip & groin which has relieved the pain pretty much but my limping and mobility is still not great because I still have that lesion affecting my labrum which attaches to the Acetabulum rim of the hip where the ball and socket joint of the thigh bone fits. So the whole posterior acetabulum met involves my labrum & pubic bone and sacral illia in my low lumbar areal. With all this the Radiologist and neurologist want me to use a cane to keep from falling. Ughh cancer sucks 🤬.

@goldensrbest With all this hip pain and labrum stuff, I thought of you and what you ‘re going through. I wanted to understand every thing about my hip pain and my Acetablum metastatic new lesion. So I copied an article and pasted

👇

A metastatic lesion (cancer growth) on the acetabulum (hip socket) can damage the labrum by disrupting its attachment, causing inflammation, or directly eroding the cartilage, leading to tears (radial, flap) or detachment, which compromises joint stability, causes significant pain (groin, deep ache), and limits motion, potentially resulting in arthritis as the bone-on-bone friction increases.How it affects the labrum

• Direct Erosion/Damage: The metastatic tumor can grow into or destroy the labral tissue directly, leading to tears or significant loss of the labrum.
• Inflammation & Instability: The lesion causes inflammation and irritation, making the labrum weak and prone to tearing, similar to impingement, notes this article from HSS.
• Shearing Forces: If the lesion disrupts the normal hip mechanics, it creates abnormal forces (shearing) on the labrum, causing it to detach or fray, says this article from doldmd.com.
• Loss of Function: The labrum's role as a "gasket" for stability and smooth motion is lost, leading to clicking, catching, and pain, says this article from Orthopaedic Medical Group of Tampa Bay. 

Common labral issues from acetabular problems

• Tears: Radial flap tears (flap hangs loose) or longitudinal peripheral tears (along the rim) are common.
• Degeneration: Chronic irritation causes the labrum to fray and become "shaving brush" like (fibrillated).
• Ossification: In some cases, the damaged labrum can harden (ossify). 

Symptoms to watch for

• Deep groin pain, sharp pain with movement, clicking, catching, or a feeling of instability.
• Pain that can radiate to the lower back or leg. 

Key takeawayA metastatic lesion in the acetabulum is a serious structural problem that directly compromises the labrum, making labral tears and dysfunction a common, painful consequence, often requiring specialized management, as noted in this article from Annals of Jointand this article from the NIH. 

@mara51506 I’m glad you got some sleep……and your humidifier😉

@intolight Very sorry to hear about your progression. Prayers as you await your next steps.

@mkestrel Cancer sure sucks-diarrhea and hair loss! Ugh. Hang in there and dream about hiking in the Spring.

@goldensrbest Hope all turns out to be benign for your husband. I did have my hip replaced 10 weeks ago. It is so much better for me not to be in pain but I understand your reluctance to undergo a major operation.

I spoke with my oncologist last evening. She is recommending that I switch to Orserdu and Kisquali. The challenge may be getting the insurance company to approve both drugs. We'll see.

Best wishes to all. I brought my Christ candle out and put it in the window but usually don't light it until Christmas eve.

Just wanting to say hi to everybody and that while I really haven't been posting, I have been following along and am touched by everyone's stories of their ongoing situations, joys and sorrows, and care very much about you all. I'm still just not real sure what has been going on with me since October. I've just been very fatigued and have had "excessive" brain fog that prevents me from really being able to focus, concentrate, compose posts, etc. It did turn out that I had an electrolyte problem with low magnesium in particular and I think that is improving. That can cause a lot of problems like I've been having. I just don't know how long that was going on, as magnesium is not one that they check often. My oncologists says that they will now check it regularly, along with the other electrolytes that do get routinely monitored. I've also had liver progression over this past year, but I find it hard to believe that that alone would explain my recent always feeling out of it. I'm told that the pace of growth has been very, very slow. It has been interesting to note how many here have mentioned how rough things have been for them this past fall. It makes me feel like the season might just be a big part of this, and not necessarily anything new or special about the cancer. While I'm sorry to see so many of you not feeling well these past few months, it does make me feel like I'm not alone, and that again, some of this just might just be a seasonal/weather thing. Right now we have been having a series of unusual rain storms (Western Washington) that I think have also been affecting all my muscles, joints, and brain - just super sore and achy, with more brain fog. They found my low magnesium problem in the ER back on Veteran's Day. At that time, they did a CT scan and said that there was nothing particularly acute or glaring, so again, no real sense of what this is all about. Having routine scans this Thursday, so will see if those show anything of note - hopefully not of course! Maybe I just need to wait until those first signs that spring is just around the corner show, and I will perk up.

I love the talk of all the candle lighting and it has made me want to do some of my own. Unfortunately, I live in an apartment complex that does not allow any open flame of any kind ever. When I first move in, you could have charcoal grills and light candles, etc. but not anymore; not for a long time. Maybe I'll light a "pretend" candle.😉

@mara51506 My DGD is biracial and has no fear of wigs, baldness, etc. Her other grandmother wore wigs all the time and was bald from her own chemo, so there is no issue there. I have not lost my hair through this journey, yet, although a couple of times it got very thin. I'll tough it out and see where it all lands. Right now after a lot of work it is finally long enough that I can clip it back so I will be sad losing it… btw my DGD just got weaved braids for the third time! She is very fashion conscious even at 10!