Bone Mets Thread
Comments
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Joy, I agree about music being a spiritual experience. It truly makes you feel alive. Elton John is probably my all time favorite. We have seen him too many times to count. In 1981 we scored front row seats to see Springsteen. My husband smuggled in a camera and got some great shots. This was way before cell phones! We just saw him again this year.
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Lita, I'm just back from the solar eclipse and want to add my deepest concerns, please let us know as soon as you learn the next steps. Keep yourself healthy and apparently those of us with the best outcomes have a sanguine personality, so practice that optimism. You are tough, and you have endured in the past.
Wendy, To go from chemo to great success and nothing to do beyond heal and recover is nothing short of thrilling!!!
Harmony, Ibrance/Faslodex takes 6-plus months to kick in; even a partial response at your stage is highly encouraging. Do not discontinue prematurely, that could be a big mistake, but your MO knows all of this...
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Anita, fantastic photos. Thank you. How wonderful to see those animals so close up!
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Cure-ious, your post has encouraged me. I'm on my seventh cycle of Ibrance/Letrozole. For the first four months my tumour marker dropped dramatically, by approximately 100, every month between January and April, from over 700 to 390 then in May it suddenly zoomed back up to 520. Since then it's been 470 in July and 500 in August. My oncologist said we won't worry about it unless it keeps going up and stays up. While I'm optimistic about it, there is a niggling worry at the back of my mind although a CT scan and bone scan in July were both clear. The bone scan, however, showed that while there's been no progression, neither has there been any regression. I'm having a MRI of my spine in two weeks to check whether my pain is neuropathic, as my oncologist thinks. Is this usual do you or anyone else know?
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Thanks AnimalCrackers xxx your experience fits with mine. Perhaps different drugs affect us all differently, too.
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I was told right after my mbc dx that cancer cells seldom go below the knees or below the elbows. But, it can happen. I've been having pain on the right shin. Anyone experienced this?
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Wemma;
I also lost appetite and a lot of weight as well. My mo prescribed this vitamin Megace and it helps me a lot. I have gained 10 pounds in a month and half. I eat like a pregnant woman now
Ziz
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Wendy- great news!
Babs
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Wendy - yahoo - sounds like you are on the clean livin' plan ... which i expect you to rock for a long long time. You know what to do. IMO, this is a huge opportunity for your complementary approach to take you from here ....
Gracie - I was very concerned and I am really glad the depression is being effectively treated. That is the foundation for improvement on all fronts. Step by step ... be very gentle as it has been a very rough period for you.
Babs - did they clear Isreal of people so you and your family could enjoy it in peace? Or are you an early riser.
Harmony - A lot of people move to Xeloda from Ibrance. Xeloda does seem to work well on cancer that has beaten Ibrance. After that, there are quite a few standard chemos that you can work through.
There are actually 3-4 lines of hormonal treatment. Sometimes it surprises me how fast doctors move their patients off of hormonals. It depends on how you present and whether it looks like hormonals, as an entire class of drugs, has failed.
Welcome. There are ups and downs, and we've had some seriously scary downs, but we've been doing pretty well this year keeping everyone on track. Stay with us ...
>Z<
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Kaption, are you still on Abraxane? If so, I did have some SE bone pain from it in my left hip, right knee and both ankles but it was temporary and relived with tramadol. I also had a sore thumb for about a month before my dx but was told by a nurse that thumb cancer would be super rare, lol. That eventually went away.
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Lita, I'm very pissed off at Mr. Cancer and sending you lots of love. How are you feeling now?
Gracie, good to hear from you! Effexor has made all of this so much easier for me. I started on a really low dose and when my pysch asked about upping, I quickly agreed since it has been such a boost.
Babs, what a wonderful trip. I am so glad you are there. And your daughter is so adorable. Can you feel the baby move yet?
Anita, those pictures - just wow wow wow!
Mom, how's DAni doing now? I love it when you check in and think of you often.
Wendy, happy for your news.
Wildflower (sorry if I'm mentioning the wrong person here), good luck with your choice. I haven't been on either so I don't have real exprience for you but I tend to evaluate these things in terms of keeping the harder stuff in my tool bag. Let us know what you choose.
Linda, congrats momma. What a huge accomplishment. I'm sorry you couldn't be there in person but glad you could share in it all the same.
Sorry for people I'm not remembering right now to mention.
Micmel, where are you love? I'm not seeing activity from you - I could just be missing it.....
Went to DIsneyland for our annual getting ready for back to school. Only walked 7 miles that day (have usually done 10 or 12 in past years) and I was pooped. I don't typically get even close to 7 miles a day so I'm grateful I could even do that, but I am worried about my fatigue at so much lower mileage. Must get more exercise. It makes a huge different and I want to keep up my energy and ability.
The bone pain lately is so bad. I feel like my hips are in a vice and someone is squishing them together to see if they'll pop.
And a year later the side where I had rads to the breast and chest area is so sore when I lay on it. I hope this is normal. Relieved only to have to have it only on one side or I'd never be able to sleep!
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Thanks illimae- that does help. I'm in my second week off Abraxane ( only had 2 treatments, then bad blood work) but that could still explain it.
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Jen. Only 7 miles lol. That's like s marathon for me. Yea ! Glad you had the strength to push thru
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illimae- hope you are safe from the hurricane in Houston.
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Jen, still have a lot of head pain and dizziness, and it's getting a little harder to focus and concentrate. The waiting is miserable, but the soonest they can get me in for the MRI is next Friday.
Hopefully I can do stereotactic (cyberknife) rads. Whole brain radiation (wbr) is scary. Just been reading up on it. If you have a good chance of "transitioning" from the original cancer, wbr isn't really going to add a lot of quality time to your life, and you might end up with cognitive dysfunction and other disquieting issues. I would only consider it for short term palliative care to relieve some cranial pressure.
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Lita
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Thanks Kaption, so far it's no worse than a normal summer storm in my area. I'm prepared, careful and safe.
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AnimalCrackers
I checked my weight today....49kg!! Yay! I've put 2kg back on since I lost 5kg suddenly last year....trying to get back to my fighting weight of 52kg again. Just hoping it stays on haha. Thank goodness I discovered Rum n Raisin chocolate doesn't make me sick if I eat it in small amounts at a time.Photo girl
love the photos. Thanks, so good to see the real thing, not the photoshopped pics we usually see.Babs
thanks for your pics too. Since I'm unable to travel because of severe neutropenia I travel in my imagination. Normally I look at Facebook pages for my "travelling" but it's great to see that despite a Grade IV diagnosis you can do the real thing. Enjoy!Hugs to everyone, have a great day
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lita just read your post for WBR. I am on 2nd week 2 more to go. I am actually doing very well with good QOL. Cyberknife was not an option for me as I have several tiny lesions..RO & MO were in total agreement to kill all of the little suckers at once. I have Namenda for cognitive but at this present time I have not seen any big changes. I have asked for Neuro oncologist consult which I will travel for. Bone mets have been stable since November 2016. Kadcyla was a godsend for me. My TM's are 15
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Illmae. Stay safe
Lita big decisions to be made. Sending hugs
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Z-it's so hot here that unless one does things real early for me it's unbearable. I have to wear my lymphedema sleeve which makes me feel even hotter. We got to Jaffa when it was opening up-perfect- no crowds!!!!! Yesterday at the shock it was only bearable because so much of it is covered. My left arm has swelled up so my DH is massaging and I'm wearing my special sleeve at night.
Jen I can't feel the baby move yet but my daughter feels flutters. Supposedly in 2 more weeks I should be able to feel him move but after this Wednesday I won't see her again until 9/5. Boo! Her DH and my DH went to shul this AM for her DH's sisters wedding so the 2 of us had a girls breakfast -soooooo special. I am truly blessed that they want us with them and that at this point in time I could even do this trip-thank you g-d!!!!!
Illimae- thank g-d you're ok!!!
Patty- waving to you!
Lita- I certainly hope your next treatment is the one!!!!! You are in my prayers!!!!
Must get ready now to meet the men in soul.
Wishing you all a great day,
Babs
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Tidays pictures from Shul. My SIL Mom and sister-the bride
and lunch at the beachBabs
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Thinking of Lita this morning. Such hard decisions to face. I hope you get some relief soon.
illimae stay safe.sending prayers to all affected in the south.
Great pictures Babs and Anita. Cool here on the east coast. Maire
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Doing well, thanks everyone. Currently enjoying a cup of coffee and a leisurely breakfast
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Phenomenal photos, Anita...I can't add much to what everyone else has said. You can almost feel the heat and smell the animals. You have an enormous gift (not to mention being astonishingly brave!!). Babs, love the trip photos and especially the tummy and the tummy pat. You must be blissful.
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hello everyone...I went to get a 6 month f/u and explained to dr that I was have pain in my sub clavicle on the right side of my back...set me for PET scan and it showed I have new lyric spot on right femur...but no other areas...I thought my leg was hurting do to over excretion while on vacation this month...have talked to dr yet but received the results via email from Kaiser...can anyone tell me treatment options available for the femur...it is 1inch in size...you ladies are so strong...hope I can be too...have two 10 year olds that I'm worried anout
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Lita - one of the ladies on the Stage IV Fitness thread did WBR and is recovering nicely. She is one tough cookie but so are you.
Babs - thanks so much for taking us on this trip with you. I am enjoying it very much.
>Z<
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mother of many, I've had rads on my left femur. It really helped.
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babs. Love the pics
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thanks for your reply...Kaption....are there anymore treatments for that area that you were offered?
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