My Husband, My Life, My Love, My Family, My Cancer

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  • candy-678
    candy-678 Posts: 4,270

    Just letting you know I am still here. I read every day, and Like, Care, comment as needed. Nothing new in my cancer world. Scans and slight med change was in November- I posted on here and updated my profile. Just keep on keeping on. Some days better than others. And the mental aspect of this disease still can be a problem. I miss my old life. But I am grateful for what I do have.

  • cookie54
    cookie54 Posts: 1,234

    @intolight I'm so sorry to hear of progression. My heart breaks a little more for everytime I read about our sisters here battling all the time. Wrapping you in a giant tight hug.💔

    @goldensrbest Glad hear polyps seem to be benign, fingers crossed. Ugh sorry to hear another joint replacement may be in your future, it just stinks!

    @mara51506 Do you sleep with a humidifier in your room? That may help with your cough. Glad MR went well but jeez another wait for dr, so annoying!

    @micmel Oh thank God you found an angel to help you! Enough already! Hope you get pain relief soon and still praying for strength for Gabby and your family.

    @irishlove I too love the idea of the candle lighting tradition from afar. What a beautiful tradition and memory for your family. Feel better soon. I hear ya on the cooking, many days we just need a break!!

    @sf-cakes I can't believe 3 years have passed without your sweet hubby. I love your attitude in honoring your love and relationship which gives you a reason to live on.

    @candy-678 Hey there, good to see ya! Glad things are status quo…me too.

    @wren44 Feel better soon, as so the winter woes begin….

    @eleanora I LOVE your idea for the holidays! As I have about 4 lists going for food even though I am ordering some of it. There is just sooo much that goes into hosting a large group! I miss my old energy and ambition I used to have. I don't know about anyone else but I feel so scatterbrained sometimes when multitasking. Feels like eternal chemo brain although my family says I remember everything. As everyone here I miss and mourn the old Andrea.

    Always praying for all, hope I didn't miss anyone. I was off a day or two and missed lots.💕

  • micmel
    micmel Posts: 10,104

    hi Candy…. Thinking of you. Hope you’re ready for the cold if it gets cold where you are. It’s 13 degrees here tonight. Theo has a sports coat I’ll have to get a picture. It’s navy blue and fits perfectly. Momma said Theo needed a coat. Theo got his coat. Daddy loves his coat too. So he’s warm when he goes outside. He hightails inside doesn’t like the cold at all. He’s snuggled between my legs right now. His little cave to keep him warm. Sending love to intolight cookie wren, Goldens sf cakes, Elenora, Tanya hope your eye is ok. Mae. How are you?????. I’ll be back for those I missed.

  • mara51506
    mara51506 Posts: 7,190

    @goldensrbest I am sorry to hear of polyps for your husband, glad they are likely benign though they may need removal anyway. I am in both of your pockets right now sending my love and support.

    @cookie54 No humidifier but I do keep my head elevated a bit, the controlled coughing, the act of holding a breath just as a cough fit hits seems to help, not too worried, everything in lungs and nose is drying out. That is good. I think all is on its way out. As far as the wait on consult has to be soon as he is going away in January so he needs to be around to explain plans and what he thinks. At this point, I am happy the CT scan of head and MRI on Saturday were helpful. I just ordered a 50.00 one on payment plan because something would be better than nothing. Will remember to boil the water before loading up and regular cleanings.

    @intolight I am sorry about the progression and in your pocket until you get more information as well.

  • shanagirl
    shanagirl Posts: 575
  • shanagirl
    shanagirl Posts: 575

    Good morning …. Brrrrr it is so cold…. staying warm under the blankets and watching g the morning news with the pugs, Sammy & Ollie, who are out like a light next to me. DH just went downstairs to make my cup of coffee☕️. I can sip it while reading along here and watching the morning news which really sucks 🤬.

    @mkestrel cancer really sucks .the hair loss is a result of the chemo infusion big guns you are on now?, I went completely bald in 2009 when they put me on Adremycin and Taxol infusions. I looked like skinny Uncle Fester.. . It’s traumatic seeing the shedding. My daughter who is a hair designer at a Spa came over and cut and buzzed it all off in one afternoon and I felt much better. I wore some pretty cancer hats & scarves, and she went with me to a lady who owns a wig business for cancer patients and we matched the color and styl of my hair, which is shoulder length blonde, When it came in my daughter came with me again and trimmed and styled it for me while I wore it. She had me looking my old self again.. I’ve kept it all these years in a hat box on the top of my closet just in case,. So the chemo pills Verzenio , along with the Fasoldex & XGeva monthly injections don’t cause baldness, but some hair thinning. My onc PA suggested a lot of her patients use Collagen powder , and it’s tasteless, and goes in my morning coffee, so my hair is still growing out a little thicker now. My nails are growing fast also. This stuff is great..Stay Warm @mkestrel, I used to get so cold and had to sleep with my cancer hats at night to keep my head warm.🥶

    @goldensrbest You and Mariah stay inside and stay warm. Our puppies go out the back door into the yard where my son shoveled a pathetic for them to go potty, so the go out real fast do their business and run back in.. it so cute how little dogs do not like the snow and the big moose’s love to run around in it and play. My other daughter posted a picture on FB showing her guy, Dutch, all happy when he first saw the snow and playing in it. he’s a big boy now. 🐕‍🦺🐾

    @mara51506 thinking of you today. last night i hop you got some needed sleeep.

    @sf-cakes I lit a candle last night for you and said a prayer for you and all here. I hope today is a good day for you sweet lady.💗🕯️

  • eleanora
    eleanora Posts: 477

    @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.

  • chicagoan
    chicagoan Posts: 1,393

    @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.

  • mara51506
    mara51506 Posts: 7,190

    @mkestrel I am very sorry about the diarrhea and loss of hair, especially it being the first time for you. It is very hard to lose it the first time, I got SIL to buzz mine off as soon as I shed, used to have long hair. Started down the wigs and scarves road. I am in your pocket on both, feel free to pm me if struggling with the loss.

    @sf-cakes I am glad you could tribute your DH memory with the candle.

    @chicagoan In your pocket with the drug change.

    @intolight Once grandchild is older, perhaps a wig of your own colour and cut by a hair or wig stylist could happen, definitely do not want to scare the grandchild.

    I have been in wigs since 2015, at first, wore a donation from the cancer clinic, got another one which was a heavy bob, even had a long halo but that hair tangled horribly. I stick to short cuts now and have had the same blonde with brown roots so I could stick what is left of my own brown hair, make it look more natural. I always wanted to be a blond and now I am, got 4 versions of the same wig and bought a 30 dollar one recently to play with, need to texturize and thin it out, it is too thick to look natural.

  • intolight
    intolight Posts: 2,857

    @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!

  • threetree
    threetree Posts: 2,419

    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
    mara51506 Posts: 7,190

    Another post, slept 10 hours as my rain background had stopped playing, I lay in bed checking weather, facebook and when humidifier is coming, I also managed to push the button of my lifeline necklace by accident so got out of bed and hurried to say it was not an emergency. Geez, oh well accidents happen. Just a thing to be careful about. Nice to know it does what it is supposed to do.

    I did sleep a long time, body needed it, still have a nagging cough but not as forceful and getting less productive, not taking meds except before my bedtime.

    Laundry and keeping up sink duty in order that is about it. Still get laundry and other stuff washed up, going through clothes and seeing about fleece pants as well although is going slightly above freezing so we will have snow melt and freeze with ice underneath. That is fine, will toss lots of salt out this evening I think. Got Herceptin tomorrow afternoon as well.

    I used a mini griddle, made one of my hashbrowns, was a bit of a pain so used my ove gloves to flip it. I left it on the plate and put in some black beans, left them in quite a while and they did crisp up well. Used garlic salt, sour cream and onion seasoning and a bit of garlic mayo, it was very good.

    My humidifier arrived so will have to figure out best place to put it tonight. Oh well, glad it is here.

    .

  • shanagirl
    shanagirl Posts: 575

    .@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😉

  • shanagirl
    shanagirl Posts: 575
    IMG_4014.png

    ACETABULUM - LABRUM

    IMG_4012.jpeg
  • cookie54
    cookie54 Posts: 1,234

    @mara51506 So glad you were able to get some good solid sleep as your body is recovering. Hope the humidifier helps, I sleep with one every night helps me with the dry forced heat in my house.

    @threetree It's nice to see you but I'm sorry to hear you still don't feel well! I can't imagine your frustration in trying to get to the bottoms of this.I hope they're right and it was electrolyte and magnesium levels that were off. Fingers crossed for extra strength and a return to feeling like yourself!

  • mara51506
    mara51506 Posts: 7,190

    Got the humidifier going, not a super strong force to blow out the steam as some is better than none I had before. Still taking cough suppressant but shall be interesting to see if this makes much difference. I did boil water first and let it cool. I will post if it assists in minimizing a cough that is finally on its way out.

  • shanagirl
    shanagirl Posts: 575

    

    @goldensrbest good morning lady. I understand your frustration with your hip. I went thru it for years with my cervical spine in my neck and after several years of cortisone shot for pain mgmt, he finally said I needed to see neurosurgeon in the group who wanted to do a very invasive surgery through my esophagus and needed my oncologist to sign off on it. My Oncologist was angry and “said”bullshit” I will not sign off on this. He’s orthopedist and I would prefer you see those Oncology Neurosurgeons and oncology orthopedics who work with me and my patients at the Brain, Spine Center.” Wow it made perfect sense to me that he wanted oncological specialists caring for my bone issues in my neck and hip. My neck has no Mets, but these drs work with his bone & brain met patients, and I’ve been doing well with their treatment recommendations. My Oncologist helped me understand that these orthopedic drs focus on surgical sport medical procedures without bothering to focus on the metastic needs of the patient. I had gone to this orthopedic group for years for both knee replacements and the neck pain for years. Even before mets. So it never occurred to me that I should work with oncological orthopedic and neuro drs who are in constant communication by text with my Oncologist. 

    Maybe your oncologist works with a team who specializes in orthopedic issues like your torn labrum and will care for you from an oncological point of view. My own scans when the oncological radiologist and oncological orthopedic drs viewed them saw that my Acetabulum, though metastic with a new lesion, but also stated that my labrum was frayed/Labrum: No fluid-filled tear or paralabral cyst. Fraying of the anterosuperior labrum…

    Does your onc have a recommendation for a second opinion for other procedures or treatment form your labrum other than a full hip replacement.he may want to treat it differently. Just throwing it out there @goldensrbest 💗😉


    Sent from my iPad

  • intolight
    intolight Posts: 2,857

    @mara51506 I will increase my prayers for you. So thankful your DB and SIL are going with you and are willing to help and that things are happening quickly. I will place a rock in my pocket to remind me of you all day tomorrow. ☺️

    Surrounding you with hugs.

  • mara51506
    mara51506 Posts: 7,190

    @intolight I appreciate the thoughts and prayers. Just feel really overwhelmed with all appointments so close together but been there before. I still plan to pack a bag for a hospital stay with chargers etc just in case they keep me over the weekend. He is gone in January so whatever happens is soon. Have followup to consult with RO, this will be a phone appointment. It would be nice to get a few days off in between stuff if I am honest. I will ifnd out tomorrow what neurosurgeon is thinking, have phone appointment with RO at cancer clinic. Just have to remember not to whine about the early hour as well. Once I hear what is what from the consult, I will post.

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