Bone Mets Thread
Comments
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Welcome, Laka, and GREAT news, Maire! Yaahoo!!
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Thank you dear! I’m glad you results are getting better. I’m going for biopsy today. Dr. wants to make sure it’s a same cancer I had 4 years ago before I start treatment
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Yes Maire stable is a beautiful word indeed!
Babs
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Welcome Laka! This place provides amazing support from a wonderful group of folks. I felt so sad for the first few months and then got busy Living when it became clear The end wasn't near...things do get better and this is a great place for inspiration and information.
Gracie- being alone can be very hard...especially when you've had a very close relationship! I'm glad you are here.
Marie- such great news!!!Yay stable!!!
Patty- It is so good to see you popping in on the conversations
. I hope you are feeling much better! We missed you.Just got back from visiting DD2 and she has a baby bump going on! She is due in August after a few years of hoping. I am so happy for she and her husband! DH and I have decided to get an apt there so I can help out when the time comes. Figured it's best to be there for her while I'm well enough to do so.
Babs- Ho was the visit with your DD and little Anton??
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Update - Well, the second oncologist was much more informative and we decided to stick with her. We also switched radiation oncologists too. Having doctors that are communicative, include the patient in the decision/discussion and are more positive sure helps. My Mom seems much more at ease with doctors that she can get answers from and are positive. Mapping for radiation treatment is next, while we wait for financial assistance to pay for Ibrance.
Sorry to hear about the passing of Aurora, even though I don't know her. Praying for everyone here. You gals are a great supportive group!
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Nice work cagirl!
>Z<
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I had terrible rib pain and I convinced myself it was costocondritus . I think deep down I knew it was mets. I was 8 years out and I think 7-8 years is a bit of a danger period for reoccurrence for hormonal bc. I have mets in my spine ( I fractured 3 vertebrae ) back of skulls during ribs . Most of my pain is from the ribs painful back from sitting walking etc so I take Endone and Targin morning and night with a couple of panedol
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glad for you maire , mine is in 3 months too but I still waiting for my gamma knife hope it will work for me and I won't need any real surgical intervention. I'm on xeloda now and the worst part is nausea and dihrea I had nothing stayed in my stomach for 3 days I hope I can cope with that and it be more tolerable
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Kathryn- The visit was the best. Anton is such a sweet baby. I’m missing him like crazy but they’ll be back on 3/12-5/8. On 5/8 I’m going back to Paris with them so I can babysit the following 2 weekends when they have weddings in Marrakash and Seville. In the meantime he’s now smiling. He is the reason I’m fighting this shitty disease. I want him to know me and to know the great love I have for him!
Babs
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Iwrite. Congrats on new grand baby news. How awesome that u r getting an apt to be close and help. Nothing like the love we have for a new baby.
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babs. Anson is adorable. That’s a great reason to fight.
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Kathryn. By the way I’m jealous you’ll be living near your dd so you can help with the grandkids. I’m still working ft so my time is limited. Bummer!
Babs
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Babs- Anton has the sweetest smile! Children and grands really are the reason we keep going. I want them to have all these wonderful memories we've made together. I know ...Let's all just get well so we don't have to say goodbye. Now that is a sci fibook I would love to read...
Patty...thank you!
CAgirl-congrats on assembling a great team! It makes a difference!
Delvzy- Sending hugs and hoping the pain goes away so you can enjoy life more.
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Bobs, your new grandson is such a happy baby. This is the best thing that could happen to us . My grandson was born last December, exsactly when my blood counts were exstrimly low and on the top I was sick. I was so happy that I didn't feel nothing. Yes, they give us a purpose to live and fight this monster. My DD live in Columbus, 90 ml from us but I am driving every week to see him, no snow, no rain can stop me
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Bobs and Blueshine your grandkids are adorable.
Ladies do you follow certain diets your dr. recommended?
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I wish my dr recommended a specific diet but they refuse to correlate diet with illness. Their fix is always a medication. Frustrating
Anyone else experiencing this.
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Blueshine your grandson is just adorable!!!!
Bab
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good morning. Surely some people will be up and on soon.
Hootie hoo
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I had a lifestyle discussion this week with a Japanese doc who is also a specialist in cancer metabolism. This expert says you can't starve cancer. In any competition with healthy cells over resources, cancer will win. He observed that in late stage cancer patients, the cancer starts turning muscle into carbs and you get that muscle wasting going on. (Cachexia) Basically, the body can turn anything into carbs. If the cancer needs carbs it will direct the body to turn muscle into carbs. Cancer will take whatever it needs from healthy cells even if that means killing those cells. One of the hallmarks of cancer is that it gets what it needs.
He recommends avoiding ketogenic diets or alkaline diets or any "cancer diet" that eliminates large groups of food and keeps you from eating what you feel you need. Eat what you want, he said. I don't think he means ice cream and cupcakes, but you all know your food groups. He would suggest that you follow your instincts and eat mindfully what you FEEL you *need* from each of these groups. Focus on feeding the healthy cells not starving the cancer was the message, 'cause that ain't gonna happen.
Here's my action plan from Japan .... I like a lot because it makes sense and I can do this.
- Maintain a high core body temperature ... saunas, warm food, warm clothing. Yay for me and my hot yoga routine. That said saunas in Japan are 180F !? and hard to replicate in the US.
- Balanced diet - avoid ketogenic diets or alkaline diets or any "cancer diet" that eliminates large groups of food and keeps you from eating what you feel you need.
- Gut health - yogurt, probiotics, etc have all been proven to enhance the immune system as far as the Japanese are concerned. There is no debate on this point in Japan.
- Regular moderate exercise. Practice aerobic exercise where the cells are using oxygen to work. Don't push yourself into an anaerobic state where lactic acid builds up as this can be harmful for cancer patients.
- Good sleep patterns ... 8-10 hours per day of quality sleep.
- Manage infections. There are two big issues here ...
- Dental hygiene - gum disease competes with cancer immune surveillance for immune system resources. Practice excellent dental hygiene - regular brushing and flossing and a good mouthwash with some alcohol to battle infection.
- Stay on top of UTIs which also interfere with the immune mechanisms that control cancer.
- Lead a happy life. Your mental state drives your immune status.
>Z<
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zarovka, good list and recommendations. The advice to focus on feeding the healthy cells makes a lot of sense. I've never deprived myself of food delights, I like salad but I am not giving up things like nut roll cookies, shrimp fettuccii, diet coke with Jack Daniels fire, and other tasty morsels along the way. However, moderation is the key, and if I have this type food and drink too often, it loses that “what a treat!" feeling. (Smaller portions help, too, not overdoing it while still satisfying the taste buds.)
So after the dx of mbc, my action plan includes more whole grains, beans, fruits, vegetables and nuts to my diet, all of which I always loved anyway. Now, as you say, I am more mindful about eating them.
I also drink lots and lots of water, which I already drank lots before, but now even more.
And I'm a big believer in eliminating as much stress as possible. I don't subscribe to the idea that stress “causes" bc, but I definitely feel that lowering stress in our lives is a huge aide in healing. All kinds of stress needs addressed, from relationships to housework to financial matters, and getting in touch with what drains me, what I'm tolerating, finding ways to address these issues and then replacing the stress with doing more of what I really want to be doing. It's been a process for me, and well worth the effort.
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Agree totally Divine. Very useful info Zarovka. Try to have a little of everything. My appetite has not been the same since mbc dx. So small meals are best. Can't exercise as such due to hip, but do move a lot!! Wonder where the day goes. Good company is important too, and as little stress as is possible
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Babs and Blueshine, Your grandsons are beautiful. They both look like happy healthy little boys. I will be smiling all day after seeing their photos. Thank you for posting them for us.
Patty, it is good to see you posting again. We have missed you. I am sorry to read that you are back in the hospital. That really stinks. I hope you are feeling well soon and can leave that place.
Z, Devine, and Minnie, Good comments from all of you. Now if we could only find some way for all that stress to by-pass our lives, it would be so helpful. Of course, life goes on, the bad with the good
Hugs and prayers from, Lynne
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Z, thanks for sharing your list of wisdom from Japan. It makes good, practical sense and aligns with many of the things that I've been trying to do already. I think the mindfulness piece is really important not just in diet but in everything we do. Expend our often limited energies on the things that matter most to us: Kids, grandkids, work, pets, exercise, food prep, art, nature or whatever it is that makes each of us feel calm, happy, centered and strong.
The one item I've not been adequately doing on that list is regularly increasing core body temperature. My husband and I have been thinking about getting a sauna. I've heard that infrared saunas have some health benefits but ive only ever tried the traditional Finnish sauna. Anyone havethoughts on these?
I just had my 27th Kadcyla infusion. I was amazed when my doctor told me that. It strange how time flies even when lived in three week intervals between infusions. I'm grateful to be doing well on this regime but my gosh am I sick of having infusions!
I've been following this thread pretty regularly and learn so much from you all. I think of you all often and hope you have a good weekend! P.S. those grand babies are super cute!
Margi
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Beautiful Baby, Babs. Good to hear about your upcoming visits with Anton.
Brilliant advice Zarovka. Divine, I agree moderation is good. I have friends who tell me the latest food group to eat or avoid. I just nod and say I’ve never eaten fast food. Lol
Great to see you here Patty. Hope all on the coasts stay safe and dry during the storms.0 -
Great advice zarovka thank you. I'm positive I will learn more from you guys. Thank you. I saw today my dr. Changed my treatment from Xgeva to Zometa. My insurance doesn't want to pay for Xgeva. I looked online and saw that Xgeva has better results than Zometa. What you ladies think has any of you been treating with any of it? What your thoughts are
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Great advice zarovka thank you. I'm positive I will learn more from you guys. Thank you. I saw today my dr. Changed my treatment from Xgeva to Zometa. My insurance doesn't want to pay for Xgeva. I looked online and saw that Xgeva has better results than Zometa. What you ladies think has any of you been treating with any of it? What your thoughts are
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I’m in the Er. RO sent me here because of pain I was having. I have been having radiation since feb 1. Took me off Ibrance so I could keep immune system up during radiation but until I went off it had shrunk cancer significantly. Now it looks like it has metastasized to hip, spine and pelvis. In just 2 months. Coming here because I know it’s an active forum and I just need a little info. What’s the next step? Back on Ibrance? Old school chemo? MO coming to see me later but just wanted to know if any of you have been in this situation
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Txgatata - Do you think it metastasized while you were still on letrozol and ibrance? Consider moving to faslodex and keeping ibrance. Consider moving to faslodex and having the second drug be abemaciclib. If you are not on a bisphosphonate like xgeva or zometa, that would be something to consider. if any of the new bone mets are painful, consider radiation. This is the current sequence of treatments for MBC, from Bestbird. Ibrance and Kisqali are essentially the same drug. Verzenio/abemaciclib is also a CDK 4/6 inhibitor but different enough that you can "switch" to it and expect continued response.
The general thinking is to stay on hormone suppression as long as possible and you still have a few options on that front.
Bestbird has written a guide to MBC which is the best review of treatment options for MBC. Instructions on how to request it can be found here. It's long but if you focus on what is actually relevant to your presentation, it's very focused and informative. A must read if you want to be involved in your treatment decisions.
I am so sorry that you find yourself in the hospital. I am sorry you have progression. You got this. It's just a treatment change, many options.
>Z<
FOR POSTMENOPAUSAL HORMONE RECEPTOR POSITIVE, HER2 NEGATIVE MBC PATIENTS IN THE US (Updated Nov. 2017):
First line Hormonal Treatment Options (depending upon what, if any, recent treatments the patient may have had in the adjuvant setting):
* Letrozole alone
* Arimidex alone
* Aromasin alone
* Faslodex alone
* Letrozole and Ibrance
* Letrozole and Kisqali
* Arimidex and Ibrance
* Arimidex and Kisqali
* Aromasin and Ibrance
* Aromasin and Kisqali
Second line Hormonal Treatment Options (depending upon prior treatment):
* Letrozole alone
* Arimidex alone
* Aromasin alone
* Faslodex alone
* Letrozole and Ibrance
* Faslodex and Verzenio
* Verzenio alone (if the patient already underwent endocrine therapy AND chemotherapy that failed)
* Faslodex and Ibrance
* Aromasin and Afinitor
Third line Hormonal Treatment Options (depending upon prior treatments):
* Possibly any of the above therapies (although not all combinations are widely used in a third-line setting)
* Tamoxifen or Fareston
Fourth line Hormonal Treatment Options (depending upon prior treatments):
* Possibly any of the above therapies (although not all combinations are widely used in a fourth-line setting)
* Either Estradiol, Megestrol Acetate (Megace), or Halotestin (Fluoxymesterone)0 -
Laka - my insurance company wouldn't pay for Xgeva either and I had one treatment with Zometa. I had flu-like reactions, 100.5 fever, and so much joint pain that I couldn't walk for four days. Really don't want to have another one, but guess I'll give it one more try. If I react the same, I'm going to ask my onc to contact my insurance company about switching to Xgeva.
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Cloud ahd Laka, the first Zometa is ALWAYS the worst.
They get better.
I always take a benadryl one hr b4 my infusions, and now I don't have any problems with Zometa whatsoever.
L
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