Bone Mets Thread
Comments
-
0
-
Oh never mind, keep an eye on the trial going forward...
0 -
Wendy - no advice, just hugs. You are doing great on the will to deal front. In my experience, if I just do the best workout I can when I am sick, I have surprising fitness when it is over. And it will be over.
>Z<
0 -
Cure-ious - I was impressed with the PI3K/Opdivo trial they recommeneded for Babs too. Here is the nature article. A promising line of research I hadn't heard about.
>Z<
0 -
Thanks, Wendy, Re my DH. Yep, he's a keeper. Those yellow roses outside the rads clinic didn't have much of a scent at all. I need 2 get another yellow bush for my front yard. The gophers ate away the roots of the old one, and it died. They chewed up the roots of my "Lucille Ball" rose, too in the back yard. That was a lovely apricot colored rose in honor of her red hair. Damn gophers! We don't use poison bcuz of our dog...we use those sticks that you put in the ground and they make a noise to keep them away. I guess they don't work that well 😔.
Sorry u can't do as much as b4 with paddling. It sucks. I LOVE 2 garden but my back mets won't let me. As 4 putting on weight, check with a dietitian who works with cancer patients. You want nutrient and calorie dense snacks. I've found I have to force myself to eat. Cancer totally changes our tastes. B4 cancer, u put a pint of Ben and Jerry's in front of me and I could eat the whole thing. Now it just makes me kinda sick. Stay away from sugary stuff...it truly does feed the cancer, and that's why they tell us NOT to eat any sugar the day b4 a PET scan. You could also check with the American Cancer Society's webite. They have nutrition links and booklets they can send u for free.
Hoping others will chime in.
0 -
Lita, I love the picture and seeing you outdoors with one of your bodyguards! I wish you a little pain as possible and hope those rads kick in soon.
babs, I think you made a very wise decision on the trial and have heard gemzar kick butt on those mets for many women. Hope the SE's are nonexistent and it works wonders!
Way to go on the treadmill test Gracie! The time I had to do one did not go as well. Kind of a humorous but humiliating experience. Sounds like the news will be good!
Wendy, that is probably the hardest aspect of this disease, losing your once very athletic capabilities. It's beyond frustrating, especially when you are trying to keep up with friends or teammates. i am a longtime biker and feel like I've been left behind by friends with more fitness and better bikes. It's lonely.
Thanks curious and Z for always providing useful links for us all!
0 -
Wendy, I second Lita's suggestion that you meet with a nutritionist. He or she can help you determine the best calorie-rich foods that are appealing and healthy. She should be well-versed in the issues that cancer patients face during treatments. My DH was told to drink three servings of Ensure Plus in addition to meals last year when he needed to gain weight after being so sick. I can't say that he would recommend them for their delicious taste, however. I kept asking him what he felt like eating, and whatever it was, that's what I served him. Eating frequent small meals is usually recommended. Of course, when nothing tastes, good, well you know how that goes. There are medications that can increase your appetite. I don't know if that is something you want to try or that your MO would recommend, but I am just throwing it out there for you. I understand how frustrating it is to be unable to paddle the way you would like to. I admire you for getting out there. Hopefully, your strength and stamina will return with time. In the meantime, be as active as you can be without pushing yourself. You don't want to overdo it and become exhausted. Sending hugs and prayers to you.
Lynne
0 -
Hi Artist & Z (thanks for the link!)
As I recall, Ibrance did so well in phase 2 that it was ended early, and as soon as the phase 3 trial was fully enrolled, the FDA approved it for everyone just based on the great numbers from the phase 2 trial. So that's why some of us would read headlines about Ibrance doing well in phase 3 trials when we were already taking it! That's a useful benchmark for drugs coming down the pike, if they are being fast-tracked by FDA, and I think all trials involving immunotherapy are nowadays fast-tracked if they get any positive results, if the results are good we may be able to get them before testing is even completed. In this case its a trial where they hope they can get a much larger group of patients to respond to immunotherapy, so its encouraging that MOs are wanting to see if it would work for hormone-sensitive MBC
0 -
Hello everyone!! Hope everyone had a wonderful Easter holiday. In spite of she's and the other horrors of stage IV!!!
I am so grateful for all of your support! You have all gotten me through some very difficult times. DH had his brain MRI. There is no permanent damage!!! He should be back to his old self once he heals from the surgeries.( shoulder and both wrists) I am hoping he can go back to work in the fall. Well, he hopes,I wish he would ditch the badge and start over at Home Depot. No more 35 pound uniform, bullet proof vest, secondary weapons in his boots..ect. He can go to work in an orange apron and no one will hate him,because of what he wears to work. Of course, it's not realistic. I'm just more afraid than ever, for his safety.
I am so relieved to hear your results Linda e.
Great to see you Annie!!!
Lita,you are every bit as beautiful and radiant as the roses 🌹
Babs what an amazing wedding,you and Dd are so beautiful!! You are so strong and have exactly the right attitude to kick this stuff out!
Deanna,how is the xeloda treating you?
Momallthetime,how are you?!?!? Dani?
Wendy, you rock!!
Z- what an amazing arsenal of good info you have!!!
I know for sure I hadn't mentioned all who I meant to respond to. I will have to come back. My feeble brain can't handle much! And this thread is (happening)
I have a question on the cancer front. My hot flashes have recently become very intense. I have one about every thirty minutes. And it is panty soaking miserable. MO thinks we might want to change tx. I have been on tamoxifen for the entirety of diagnosis. I have also remained stable. Should I consider switching? Or tough through the yucky wet panties? Grr!!!!
0 -
Chelle, Thank you for sharing the good news about you dh's MRI. You too are going through so much. At least you know he has no permanent brain injury. I understand why Home Depot is so appealing to you. Unfortunately, your husband and other police officers are driven to a career that is vital for our safety and stability. He knows that he is filling a need and helping so many people. I say unfortunately because it causes stress and worry for you and your family, but it is very fortunate for our society that so many people like your DH put the needs of strangers before their own. I pray that you and your DH never again have to experience the fear and pain that you have lived through for the past few months.
Hugs from, Lynne
0 -
Chelle, what tx is your MO considering changing you to? Is it possible you would still have hot flashes? Does your MO think that you could have even better results with another tx? (Nothing wrong with stability, of course.) The importance of QOL cannot be dismissed, and I understand why a new tx plan might be a good idea if you can feel better. Hot flashes that severe every thirty minutes sounds horrible to me, and I would be eager to change if it meant relief.
0 -
HI Chelle,
It is so good to hear that your dh is free of brain damage. What a relief for both of you. It still makes me mad to think about what he went through. A good friend of mine is Chief of Police in a nearby town and he tells us scary stories all the time. I second your dh work at Home Depot!
Did your MO mention what he/she suggests for change of treatment? Have you had scans lately? Maybe one of the AI's? Those bring on hot flashes too though.
I'm on day 4 of Ibrance and my intestines are rebelling. Yikes.
0 -
Hi, Chelle ~ I would say, stick with the Tamoxifen and find ways to mitigate the hot flashes. There are meds that can help (talk to your onc), as well as natural things. I'm saying this b'cuz, at the beginning of our mbc tx, it seems like there are many drugs available -- which there are. But then if you have a problem with one, you can suddenly find yourself with far fewer options. I had a reality check recently when my local onc expressed a fear that my low counts might prevent me from getting any chemo. Thankfully, the low counts resolved, but it was a sobering realization. Hot flashes can be miserable, but you have no assurance that switching meds will lessen them. I'd ask about and maybe consider trying things like low dose Effexor or Gabapentin before leaving a med that's keeping you stable. JMO....
And wonderful news about your hubby! I can certainly understand his strong need to get back to work, as well as your fear. Any chance he would consider and could get re-assigned to detective work or something other than what he was doing?
Linda, so sorry about the intestinal upset. I found some of those SEs did improve over time, but I also used a lot of Phazyme Maximum Strength and a natural antacid chewable. Also, I'm sure you know, be sure to take it after a full meal and with a full glass of water.
Hugs & prayers for everyone ~ Deanna
0 -
Hi Chelle- you are not alone with the hot flashes. Mine started when chemo threw me into menopause in 2013. They started getting less last year. Now that I am getting the Faslodex shots they are the worst they have ever been. Sweater on, sweater off all day. My arms are getting a work out 🏋. I don't think switching will make a difference as it's a side effect with all of them. I just wish my hair would grow back so everyone can't see my bright red ears. If you find something that helps please share.
0 -
Ladies! Deanna is absolutely right. They are going to give me gabapentin and continue with tamoxifen. Diana,I will let you know if it gives me any relief. Even a little would be welcomed. I also find that those emergency ice packs are a great addition to my glove compartment!! You just squeeze them and it instantly turns cold!!! I love them. Thank you Deanna!!! You really know your stuff. Hugs to everyone!!❤️
Love Chelle.
0 -
first mate /Janet, I too was told skull mets do not go into the brain for same reason. Then I read somewhere, if skull mets was along suture line it could potentially eat thru skull, go to brain. I choose not to dwell on it. My RO only sends me for PET scans every 3-4 months because bone scans did not show bone mets for me. We also treat only bone mets that give me pain. It was very frustrating to not know if I had much pain due to fentanyl patches I have been using for 3 yrs now. Last fall I stopped the patches & was having a lot of lower back pain & hip pain . The PET lit up on those spots so I continued the patches & did radiation to those areas .
0 -
Low-dose Lexapro stopped my hot flashes cold after my hyst/ooph in 2010. Those suckers were raging, all day every day and all night long, too, and I was losing my mind. Living in a state of dread and anxiety. I cooked Thanksgiving dinner in a tank top that year and everyone else was bundled up in sweaters begging me to stop opening the windows. LOL.
Anyway, I took Lexapro for a year and when I quit, the heat waves from hell never came back.
0 -
Chelle - I had to switch to Effexor for some allergy testing. Hot flashes got 98% better with Effexor and what a change in QOL!
0 -
I always get great advise from BCO. My MO has commented more than once,how surprised he is with my knowledge. ( not mine,yours)!! BCOis the best tool I have found,to get through this.
I can't wait to stop sweating 24/7!!!
Lulubee- we have some pretty cold nights here in co. When I walk outside,you can see the steam coming off my head,like the football players do after a 80 yd.run. How are you doing on the taxol? Frying those mets?
(((Hugs all around)))
Chelle.
0 -
It seems that we have one extreme or the other. I do not have hot flashes with my current treatment, but I am cold almost all the time. I always have a sweater or sweatshirt on when everyone else is sitting around in t-shirts. I must say that it is easier to throw on extra layers to get warm than it is to suffer through those hot flashes.
0 -
I am wondering if someone could reach out a bit to me. I had 'low risk tubular breast cancer' about 46 months ago. Stage 1 grade 1 only 1cm. I completed a mastectomy and chest wall radiation. I am on tamoxifen. I am active, a good weight, I cruised through my treatment and returned to work in 10 weeks. I was just getting beyond the fear. Last Thursday I had images for my left shoulder as it was bugging me a bit the past month. The ultrasound showed the tendonitis and an inflamed bursa (no problem I can deal with that) but the x ray should a 4 cm destructive lesion in the proximal part of my humerus (suspect bone mets now). I am so shocked....how did this arrive with low risk BC? The doc says I need a bone scan (the lesion was not there 3.5 years ago), an MRI and CT of my pelvic area and a biopsy of the tumour site. Someone must know this kind of story?
Denise
0 -
Denise...so terribly sorry you find yourself here.
Yes, that can indeed happen. Cancer is sneaky and cruel.
Some of us, like me, DIDN'T EVEN HAVE A DETECTABLE LUMP in the first place, and bingo, here we are right out of the gate with full-blown stage IV cancer. In my case I have both organ mets and several bone mets. I hit the jackpot. No stage I or II...go to the head of the line at stage IV.
To say I was shocked by my Dx was the understatement of the century.
But there is plenty of hope. Women with bone mets can now live for YEARS. Treatments are doable. Lots of women work while in treatment, too. You will find excellent support and lots of knowledge here. I am one year out from Stage IV, and for the most part doing better than I was last year at this time.
Others will chime in too.
Another good thread on this site is the "There is life after a st IV Dx."
Take care,
Lita
0 -
ottowa~ i am so sorry that you're having to re visit this fear. The truth is, they just don't know what the cancer will do, I went from stage two to stage four in two weeks And I was astonished. Breast cancer almost always spreads to the bone, if it's going to spread, in my case I don't even know how long I had cancer and was diagnosed after a 6.5 mile run in less than a hour., I was in tip top shape. All of a sudden, not only was it in my breast, it was in my liver a small marble size, and making its way into my pelvic and back area, which is where it usually presents. The good thing is, if this is a met, it has been detected early and then you can get in treatment, none of this is easy and the shock is a horrible feeling. We all really understand. I have about 5 spots in my back and right side of my pelvis and last week I ran 22 miles, it takes great effort and time, but they have treatment. You will most likely be put on a hormonal treatment such as anastrazole or letrozole, I am also on ibrance, it is usually the treatment they are choosing because it's been rather successful. You may be asked to biopsy, but do it,because they need to make sure of the type of cancer it is, to assure the best treatment. It may not be what any of us wished for at all EVER!!!! But please take a breath and realize you're doing all you can, I know exactly how you're feeling I 100% in my heart understand and this forum will become your sisterhood as well. I am praying it's not a met!! But if it should be one. Remember you're not alone. We are all going through it as well. God bless you honey, ~M~ Keeping everyone close in prayer
0 -
Ottawa,
I had Stage 0 (considered precancerous) in 2005. Had lumpectomy, radiation and tamoxifen for 6 years. In 2012 I had Stage 0 on the other breast. Had a double mastectomy. That was July. By the next Summer I was dx with mbc. Anyone's guess which one went rogue. Anyway- yes, cancer is so sneaky!
0 -
Ottawa, my bone mets were found after I fell on the ice and MRI'd my shoulder looking for a torn rotator cuff. I was 7 years out from stage 2. Bone scan confirmed it and ct and pet scan determined that it was confined to my bones( ( almost every one of them.) I am 2 years metastatic now and doing well. My onc says I have many years left. You ha e come to the right place for advice and support. Very sorry that you have to go through this though.
0 -
Ottawa, thinking of you. I know this is a terrible shock, but rely on the ladies here. They are a wealth of knowledge and we all understand the shock you are feeling. But as Lita says there is plenty of hope and as the others said it is doable. I am 3 years as Stage IV and stable, all things are possible. Keep us informed. Praying for you!
Diane
0 -
Ottowa, I too am keeping you in my thoughts and prayers. I was diagnosed stage 2 grade 2 Er+ breast cancer in 2015. I had the Oncogenes test and was told after lumpectomy, radiation, A/C chemo and 5 years Arimidex, my odds were 14% chance of recurring in 5 years. I should have asked what happens after 5. Imagine my shock and horror when I go in for normal visit and ask an innocent question about my jaw only to be told don't go anywhere, you ate seeing an ENT today.
Long story short, it turns out I have a tumor wrapped around my main massiter muscle in my face that had pushed my cheekbone out. Rare, but not unheard of. While waiting for biopsy results had pet scan that I lit up. Several in spine, right hip and rib. Ironically, I had been complaining about hip and neck pain for months. This was 2012.
I understand your feelings as does everyone else here. They run the gamut of shock, fear, anger, grief, anger but eventually you will settle down, a plan will be made and your life will go on.
I was positive I wouldn't make it this long. So grateful I was wrong! They have so much in their arsenal, I fully expect to be here a lot longer!
You found a great group to support you. I just discovered them and wish I had them when I was diagnosed! They are a blessing!
Good luck and God bless!
0 -
Ottawa, I'm a newbie here and I can tell you these ladies are wonderful. I felt a lump for the first time and was diagnosed in less than two weeks with stage IV confirmed a few weeks later. I was 41 with no genetic reason for this, it's shocking but here we all are, in it together.
0 -
agree w/all the above. I quit going to church couple years ago, it was too emotional for me. After going to X-mas & Easter services w/ 2 different sons, I decided to resume my church last Sunday. The bulletin adivertised the beginning of a group called WOWS, /Women of Wisdom, prayer group to start last night. I thought it would be a nice start to get back to what I was missing. After the meeting, which I introduced myself & explained why I was there, a couple of long term BC survivors came & talked to me. My favorite was older woman who said her initial cancer was very small, had lumpectomy. 5 years after initial Dx she fell & broke her arm. Ortho thought she had bone mets. Sure enough she did & that was 17 yrs ago.i am looking forward to this group of women & their already awesome support.
0 -
Ottawa, I had no idea, went in for regular check up, my tumor markers were up. Onc ordered scans and ends up after 9 1/2 years clean from stage two, I had it up and down my spine, both hips, left femur, ribs front and back both sides and skull. Talk about blown away! Anyway, that was in August and these ladies have been here to help through all the panic and anxiety. You will feel better when you get a plan started.
On other news. My cardiologist called today, my heart is just fine! Yea!!! At this point they're thinking it is all the medication so they're starting to adjust my medication a little bit. Yay !!!! Now to kick this cancers rear and I'll be good for years to come!!!!
0
