Bone Mets Thread
Comments
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Gaia - I was on Tamoxifen for only 5 months. SEs were bad joint pain, hot flashes and constipation. It's very personal, because Annie said she had no SEs whatsover, and I have much less SEs with Femara. Go figure. We are all different.
Annie - yes, we have beatiful weather, hot but not too humid
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Just wanted to pop in & say hello to everyone, those who are new.... sorry you're here & hi to everyone else. I am still keeping up with reading the thread.
Gaia, I took tamoxifen for 5 years total. But I found that the brand made a huge difference for me. I am allergic to lactose fillers, so I had to find one that didn't have it. I had terrible joint pain with the lactose one. Once we figured this out, I had no other issues other than a few hot flashes. As others have said, we are all different, you may not have any problems. All you can do it try it & see.
The rads to my tumors seem to be working, I'm having less pain, though I'm very tired this week. My friend Susan with colon cancer is not doing well & I think this is adding to my exhaustion. I'm so sad for her, she is 58.
Take care everyone. Cheers, Dee
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HI Dee! Glad you're getting some pain relief. I found when I had rads for Stage IV, I was super tired at about 2 weeks after...took a month to be back at 100%. When I had rads for Stage I, the tired went away in days after I finished. Huge difference. And apparently not uncommon. So horribly sorry about your friend; just tragic. Sending hugs.
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I'm sorry about your friend, Dee. I'm sure it is contributing to the way you feel. I'm sending hugs too.
I think I let them schedule me for an unnecessary procedure. I got that MRI of the head on Saturday. On September 3, I get a PET scan. Doesn't the PET scan cover everything? Plus, now I will need to schedule with a dermatologist because there's a thing on my face I don't feel good about. Lord, please let this ease up a bit. I need a break from the fear. Know what I mean jelly bean?
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Awww Dune. I'd send you jelly beans if it would help.
(I'm being silly). Sending you hugs instead....you're going through the crap!0 -
Hi Dune,
Geez, sorry you are having such a tough time lately.
I don't think the MRI is unnecessary. My understanding is a PET shows cellular activity. Your brain is a very active place, so it lights up on a PET along with other organs with lots of activity like your heart. It's good for seeing cancer only in places where there shouldn't be so much activity going on (bones, liver, etc.)
MRI gives the best images, so they can see if there is anything there that shouldn't be.
Hope that helps and hope both MRI and PET show only good stuff.
And hey, I have all kinds of stuff on my face I don't like the looks of! (I believe peach fuzz was mentioned a page or two back?!) Just kidding. Hope that thing you don't like the look of goes away all by itself.
Gentle Hugs!
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that is great news jobur. It really helps to know how they differ. the advantages and disadvantages. Kiwi, I'll be looking for those jelly beans and hugs. J / K. I'm a recovering jelly bean addict. Hugs are always good though, getting and giving.
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Dune...there's things on my face I don't like to..like my nose and double chin. And white in my eyebrows! Seriously, I do hope the thing on your face is nothing to worry about. You're so overdue for a break!
Sending lots of hugs.
Terre
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Dee, so happy the rads are helping with your pain. I was tired for a month and a half afterwards, they told me that wasn't unusual. I'm so sorry about your friend, the stress of knowing she's not doing well has got to be hard on you. I find it so painful watching the people I love hurting in any way. My friend from Vancouver Island was here to visit me last week, it was a very emotional reunion, I hadn't seen her in 20 years. She wouldn't stop crying whenever she looked at me, and I was trying to be strong but her tears sent me into motion. Hugs to you Dee, thinking of you always.
Dune, prayers for the MRI to be clear and that the Pet Scan shows improvement. You deserve a break for sure and I hope the spot on your face is nothing to worry about. Sending you all the hugs you need.
Terre, lol at your comment about things on your face. My nose is what I'm self conscious of and now all of these chin hairs I have growing, started with 1 pesky one and now I'm up to 6. And I have white eyebrows coming in, very white, wth!
Jobur, nice to see you here, I hope you're doing well. Good explanation on the MRI and Pet Scan, thankyou for that.
Hugs to all, Annie
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hi guys popping in very quickly, almost home. Dune just wanted to give u hugs and prayers. PET scans go from neck to knee only. Your MO must want a look at everything.
Gaia, on tamoxifen for 5 years, no problems at all,though did eventually need cataract surgery, but it kept this crap away for 10 years.
And hairs where u don't want them forgetaboutit! All over except where I want them. Gray and brown. There for years though I have 10 years on you.
Sorry I missed some of you, back on the road again home in 6 hours! Road trip worth it though!
- Welcome to all the newbies and all my old friends only happy days and good news! Myra
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Lynne50s, welcome! I am only 4 months older as a bone metser than you. There are at least three more bone mets newbies on this thread are also from mid New England. Lynnwood is another 2015 bone mets newbie form PA. Wish all of us big success in the first line treatment!
LindarL, do come to visit us this fall!
Dune, support your decision to get a brain MRI. Since you haven't heard from your doctors, the result must be a good one!
Amy, your thoughts and act of adopting two baby guinea pigs is such a bright light in our land!
Terre, is the goat picture taken in your new house?
Everyone else, happy Monday!
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Dune, Glad that explanation made sense as I wrote it in the wee hours before going to bed. When do you get your results? So what were you're favorite jelly beans prior to recovery? My MIL loves the black ones!
Annie0, WOW! Your life has really been a whirl lately. First that really good scan, then an oh so significant B-day and anniversary and now a visit from an old and dear friend. I hope these celebrations were healing for everyone in your familly. Also hope you are not getting too wore out, but oh how worth it! LOL'd about the 3 hairs, you are one talented woman to have managed to pull those suckers out without benefit of tweezers. Your family is just beautiful as are you, inside and out!
Patty, So sorry to hear of your progression, but you sure got a lot of time out of your 1st tx, so hopefully the Faslodex and Ibrance will go a long time too. I started Ibrance last week too, have already been on Faslodex since April. Hope your shots went okay. How are you recovering from all those surgeries? Sounded like a lot! Hope it pays off and soon!
Dee, Glad to hear your pain after rads is subsiding some. I am so sorry about your friend. It's so very hard to watch people we love go through this. I hope it will help us help those who love us when our turn comes.
KCW, Woman, you work too hard. I worry about you burning that candle at both ends, but you seem to be thriving. Thanks for the many funny posts that keep us all smiling. Are you due for another move soon?
Myra, Congrats on that beautiful granddaughter! Hope you are enjoying her to the max!
Sorry for not addressing everyone. I read this thread daily and all of you are always in my thoughts.
I'm off for my first blood draw since starting Ibrance a week ago. Feeling good, hope my blood is too!
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HLB thank you for your response-
Jobur best wishes on your blood draw today.
Xavo I'm a newbie here too- straight out of the gate no less.
and thanks again to all who replied/will reply to my queries around Tamox and herceptin
Going to fill my script today.......
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Dune, I wanted to tell you about my own experience with "something" on my face. This was about 15 years ago. I had a "something" under my eye. PCP didn't think it was anything but sent me to a PS since I wanted it removed. PS removed it, and path report said "Basal cell carcinoma. Margins are clear." So I was diagnosed, treated, and cured of skin cancer all in one day. Thought I, "Yeah, that's the way to do cancer". Little did I know....
You should just know that a lot of these "somethings" on our skin, especially our faces and backs of hands, tend to be removable and have give no problems afterwards. They just use up a lot of our worry energy.
Leah
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Leah, that IS the way to do cancer. My mother gets a lot of basal cell carcinomas and pre-cancerous lesions. My grandfather had it and my uncle deals with it too.
I was able to get an appointment with the dermatologist for September 2. That's amazing. It usually takes forever to get an appointment with her, so that's one good thing. A second good thing is that my brain is ok, at least as far as the MRI is concerned. Rock on!
Best wishes Gaia.
Jobur how did you manage to keep all that together and still apologize for not addressing everyone. You're funny. Someone up above you had me cracking up about chin hairs. I'm afraid I'll lose the post if I go looking, but YOU KNOW WHO YOU ARE.
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Dune - great news on MRI. Keep on rocking
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Dune~ROCK ON is right! Now let's hear some good news from that PET. Glad you think I'm funny. Lately I have been referring to myself as a recovering perfectionist.
Good advice from Leah. One of those things that before bc might have been a big deal, but now all in a days fun. Glad you could get into the dermo appt. so quick. Usually takes forever here too.
Xavo, Lynn, Rachel, Gaia, Valerie, and any other new gals~ Sorry for not welcoming you earlier to the club no one wants to join. I am a year out of learning I was stage IV from the get go and just want you to know it will get easier to live with in time. Do whatever you have to do to get through these first months, they are so very hard, but it really will get better. You are way ahead of the game already just by being here. Great information and you always know you are not alone.
1st week on Ibrance and blood work looks normal. Okay, it's only 1 week but I'll take it anyway.
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Dune - happy to hear about your MRI results.
Gaia - I am wishing you good results and no SE's as you begin your treatment.
Hello to everyone else on this thread. I hope you are all having a good day.
I had an appt with my bs today. I have not had surgery and most likely will not, but my specialists work as a team, and the bs will continue to monitor me. Anyway, she said that the tumor in my breast is shrinking and has become soft. I am always happy to hear about progress. I know I will also have bad news sometimes, but for now,WOOHOO!
Enjoy the rest of your day.
Lynne
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Lynne, Great news!
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Dune, great news from your MRI!
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hello, ladies!
sorry for not writing some time. I performed a PET CT - they say:
"CONCLUSION based on performed PET/CT scanning: post-treatment changes in the Th6 and Th7 vertebrae.
There is no more evidence of metastases (incl. metabolically active metastases)."
Should I think that radiation therapy worked?0 -
Hi all,
Dune - what great news on your brain MRI. Hoping the same for your PET! Sorry to say this, but we are no spring chickens anymore LOL, and there's all kind of things on the face, the hands, the chest, the arms, you get what I mean jelly bean?
Dee - good to hear your pain is better. So sorry for your friend, but she is fortunate to have you by her side.
Jobur - congrats on your blood results. Hope it stays that way!
Leva and Lynne - WOOHOO to both of you! It calls for celebration. Raising my glass with both of you.
Patty, how are you? Thinking of you. And you Deanna, how is the new tx treating you?
Myra - you must be exhausted from your week and ride home, but oh so much worth it.
I echo Jobur's comment to newbies. I was also dx stage IV from the get go. The first months are hectic, mind boggling, roller coaster. Hang in there, it gets better!
And to all, hugs and a good week!
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Lynne, Leva and Dune - what great news! Love reading great stuff like this.
The sheep in the yard is at our present short-term rental. Unfortunately, I didn't get to watch her being sent home; the owner brought his experienced herding dog and "worked her off the water tank and down the hill to the gate".
We put in an offer on a house and are just waiting for the inspections which are required to finalise the financing. Scary. And probably insane. But I do have a fair amount of life insurance so my husband will be ok if he's left on his own. And it's a full acre which can be subdivided, so we can always sell off part of the land if we have to. Assuming we get it, we'll move in November. If we don't get it, we'll move somewhere else in November as our lease is up 01 December. So...I'm being very optimistic about my future. We did get a 10 year mortgage that I hope to pay off in 7 or less years.
I have more chin hairs than a billy goat. Don't even want to discuss it.
Speaking of strange stuff on the face...about 20 years ago, I developed this perfectly round (sphere) lump on my lower eyelid. Went to the eye surgeon and had it removed and it looked like a pearl (small, but perfectly spherical and bright white). The surgeon said he'd never seen anything like it so he sent it for biopsy. Turned out that a cat hair (go figure) had worked its way into my lower eyelid and my body responded like an oyster and formed a pearl around it. Surgeon called me personally to tell me the results and to say that the path lab guys said they'd never seen an entombed cat hair before and they got a good laugh from it. Sheesh.
Sending hugs to everyone - sorry not to respond individually, but I am supposed to be at work.
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KiwiCat, I laughed so hard when I read about your entombed cat hair that my DH thought I had lost my mind. Thank you for sharing that story with us. I will keep my fingers crossed for you to finalize all the details forthe house purchase. It is a big step but so exciting.
Lynne
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Terre - keeping fingers and toes crossed for your house!
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Lynne - great news!
Leva- also so great
thanks Jobhur and Linda for the encouragement.....
I just saw my scan results for myself and it's quite terrifying and mystifying I have mets to about 10 bony places- plus they marked a lot in my lungs- but MO says it bone and that the lung marked stuff was 'nothing'
my tumor marker also went up since June- which i guess makes unfortunate sense since I haven't started treatment ( but am this week)
So.... ugh and thanks for listening and being here and sorry I haven't reached out to everyone- just getting my bearings
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Terre, best of luck on the house. Just got home and hope I will be human tomorrow. Love to all.....Myra.
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Dune so happy your MRI came back clear! That is great news, you must be relieved!
Lynne, sounds like your treatment is working, so happy for you!
leva, wow that is awesome and yes sounds like radiation therapy worked! I just received the same sort of results after having SBRT and Cyberknife to my mets.
Jobur, thank you for all the kind words, you are so sweet. Honestly my life has been a whirlwind lately and you know what today it hit me, I'm tired! I've literally been having something going on everyday for the past week and a half. Today I realize it may have been a bit too much but I was having so much fun. Alot of good memories for sure, my surprise 50th is something I will never ever forget! How have you been doing? It's always so nice to hear from you!
Terre, omg your story was too funny, especially because I am a cat owner and yes that cat hair can weave itself into the strangest places! But really, that is incredible and not going to lie but I got a chuckle out of it! Between that and your comment about having more chin hairs than a billy goat 😅. Yep that's me too, it's so annoying! Best of luck with the offer on your new house, I hope it all works out for you.
gaia0132, those tumor markers will come down once your treatment is started. Best of luck to you and we're hear to listen and help out in anyway we can.
Myra, welcome home! You must be exhausted but I'm betting you really enjoyed your time with your beautiful granddaughter, rest well tonight.
Patty and Deanna, wondering how you're doing. Please check in if you can, thinking of you both.
Well my eyes are bobbing so going to sign off. Hugs to all of you, Annie
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Lynne, Dune, Leva, great news! Congrats!
Gaia, best wishes!
Jobur, thanks!
Terre, you are unbelievable!
Everyone else here, peaceful, enjoyable Tuesday! (Rainy here.)
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New to this board and ironically looking forward (?) to be part of such a supportive group of women after reading the previous posts. I was diagnosed earlier this month after debilitating back and hippain for weeks and weeks. It turned out mets led to fractured L3 and L4 vertebrae and the compression made my spine shorter by 3 inches. It was a godsend orthopedic surgeon who managed my care, performed a kyphoplasty, did a bone marrow biopsy, and had me fast tracked to one of the best medical oncologists at Penn. The mets are pretty significant: skull, spine, ribs, on and on. My MO agreed with the above post that it doesn't matter if one bone or thirty are affected; they will respond to treatment. She also referenced many patients she has treated for her 15 years in practice who are doing well. That DF doc sounds so hurtful.
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