Bone Mets Thread
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Lita, my favorite pot shop told me to keep my medical MJ card because then I won't get charged taxes. They also said that there are some things that won't be available for recreational use that will be for medical. It may be that you have to make sure that you go somewhere that is licensed as medical as well as recreational.
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Beautifully said Lulubee and Babs his story was amazing. You are very lucky to have had a father that was so wonderful.
Z I wish I was half as energetic as you are. You are so on the front lines with your care you got this😊.
So let me know the good places to eat in Florence and what you are seeing ,pics please. If I'm still around and can do it I'm heading there in July seems like such a long way away.
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Babs-I loved the story of your father's life. Thank you for sharing; I can see that he was a "made of gold' man.
Z- How fun Florence must be this time of year. Wow, talk about cutting edge. Proud of your keen research and ability to go after the treatment that you want. Tumor markers are so troublesome, and they bother me a lot, too. Your Bangladesh analogy made me laugh! I hope the radiation triggers a whopping immune response.
Love to each, may the force be with you....MJH
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All in all that sounds like a great experience Z. A partial response at least gives you somewhere to aim. I hope radiation gets you a great response and that your tms drop drastically. Will be reading and hoping you can go back and finish off strong in Japan, maybe the second trip will bring those counts to point that will do substantial good
You remain in my prayers (P.S. Chianti is a cure all for everything that ails you 
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Gracie - yes, exactly. The partial response gives me somewhere to aim. None of my regular MO's can figure out how that partial response might have happened if the ACT didn't do it. Of course, if my tumor markers drop after this trip I am going to credit pasta and chianti.
Wendy -just stay in the pedestrian zone (which is huge) and you can't go wrong. I have never seen so many restaurants. There are easily 12 within a block of our B&B. It seems the best ones are the ones that are not in tour book only because the tour book recommendations are so crowded and most restaurants are very good. My one recommendation is to pay the $ for the guided tour of the duomo and you must do it well in advance. If you just get a ticket, you have to wait in line for hours. I missed the interior of the duomo because I could not see standing for most of the day to get in. Many reasons to start planning now, if only to keep your head in the game.
MJH - The comparison between Bangladesh and NM medical care would be funny if it were not true. But it does make it easier to justify flying to Japan for treatment. I am certainly not going to find the cure here unless I hook up with a decent a Medicine Man.
>Z<
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Babs, adding my name to the chorus singing the praises of a man that served his country and took care of his family, especially two young girls who lost their mom to bc. How hard for you. Your grandson has a special guardian angel now.
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Thanks Z yes I watched a few of Steve's (can't remember his last name) videos on the subject very informative. Going with my sister it's our swan song ☺️. It seems so far away my hands are falling apart because of the Xeloda and feet hopefully I'll be able to walk around. Been having a bit of liver pain lately makes me think it's not working anymore. Feels like a side ache from excerising scan on the 25th.
I hope that port issue is cleared up soon for you pain of any kind sucks.
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Babs, your father was a wonderful man. I pray you have many healthy years so you can share his story with Anton.0 -
Wendy, I was on Xeloda for three years. On vacations and trips, I wore one pair of Skechers and carried a second pair in my bag or in the car, so I could switch shoes every few hours. (They weigh almost nothing, seriously.) On days with lots of walking, I buddy-taped my little toe to the next toe because that's where I was most likely to lose skin. Blister pads on the backs of my heels and wherever else I might need one. Lots of lotion at night but no soaking in water, ever. Compression socks are good for a few hours here and there, and white cotton gloves. I bought those by the case. I packed lightweight rubber gloves in case I needed to wash something out in the sink. I paid for porters to lift and tote my bags if my family was not with me.
It takes some forethought and planning ahead, but it's probably doable for you.
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Yes, Wendy, the gloves are a MUST when on Xeloda. I still wear them even tho (finally, after 4 mos.) my hands and feet are pretty much back to normal. Last three toe nails on each foot haven't yet come back, but that's ok. I wear the gloves now for sanitary reasons. They get FILTHY after just one or two days. Reminds me NOT to touch eyes, face, mouth. Put a decent cream on your feet at least twice a day and wear light, cotton socks. When in the hotel, put your feet up whenever you can...keeps the blood from pooling in your feet.
L
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Babs, I'm just reading about your father's passing and want to express my condolensces to you and your family. From the story you shared, he seemed to be a remarkable man who had a wonderful long life. So glad you were able to see him and tell him about Anton. May all your cherished memories comfort you through this time of grief.
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Thank you so much ladies I value your advice immensely, I feel sometimes with the SE doctors don't help much. I asked my doctor for a referral to a pediatrist and he gave me a box of sample creams he said would help. Made them worse so I'm back to urea cream. Need some gloves thanks again
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Wendy, you might search the Xeloda thread for "lulubee foot cream feet" and see if you can find my old posts there about this. My brain has moved on to a different set of problems now and I don't remember all of that off the top of my head, but I did a lot of digging and experimenting at the time and posted about it.
And yes, Lita, the gloves get GROSS. Very eye opening.
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Wendy. I too posted in the Xeloda thread the 2 medications that the derm at Mskcc recommended for me-and they helped! I just can’t remember their names now. The Skechers are a huge help as are the gloves -I bought 100% cotton ones in black on amazon. The white ones weee gross too quickly!
Wishing you relief
Babs
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Wendy, I've been using liquid bandage for my cracked fingers and that has helped it from getting worse. I also use Aquaphor and Udderly smooth and Working Hands. All help some, but you're right, it's nasty.
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Wendy: It's essential to wear lots of cream at night with gloves on. As you sleep for several hours, the cream penetrates and helps heal your hands. Same thing with your feet and socks
Luckily it's winter time and the gloves and socks keep your hands and feet warm. I remember during the summer, it wasn't so much fun, but I continued to wear gloves and socks at that time anyway.
Right now, I'm dealing with a little numbness from the Taxol. Oh well...it's always something.
L
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Hi Wendy,
I have had good luck with Amalactin foot cream as well as Eucerin cream in the jar (advanced repair). Working Hands and Udderly Smooth have also been good. Amalactin saved my feet when they were so bad I couldn't walk. I also ice my hands and feet when they are painful, which has helped as well.
I'm a conductor and singer and spend a lot of time on my feet. I wear asics gel cumulous running shoes which have been great, although I sure do miss stylish shoes. I bought a new pair of black soft dress shoes for work. After one concert night (5 hours on my feet) my feet were destroyed - back to running shoes.
A lot of this is figuring out what works for you - a lot of trial and error.
All the best,
Mary
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Babs, I’m so sorry about your dad. At least he had a long life and loved you and went peacefully. When my Grandfather passed, he had been waiting to see me just before his passing. He told me that the show must go on. I’ll never forget his words. The next day he left us. It’s so true how the circle of life keeps turning. I hope Anton is doing well. I love his name. I hope you are feeling better. Keep going we all love you, you are so kind and helpful. I hope you have a Happy New Year. You must be as cold as we are in Upstate NY. Time Square is not an option for me this year!
Hugs to you and your family.
Love Anita
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Anita. Thank you. We’re still in Paris with our wonderful Anton. My Dad will be buried in Arlington cemetery sometime in the spring. I’m going to have such a hard time when I have to go back home in the 7 th. This sweet boy is such a joy! Plus when I go back I have soooo many dr appts to deal with! Ce la vie!
Wishing all my wonderful bc sisters an easy year in 2018!!!!!
Love you all
Babs
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Happy New Years from my very French Grandson
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Wishing the whole BC family Happy New Year and all the best for 2018!
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Back at ya BJ. Sitting in my hotel room in Siena waiting for the band to bring in the new year out on the Campo Central. The appropriate mix of celebration and chillaxing for me.
>Z<
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k just took my first Ibrance!! Scared half to death! The taste is horrendous!!!! Took with yogurt (fat free) and half a peanut butter sandwich, hopefully that's enough fat!
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Gracie...I'm one cycle ahead of you and doing alright. You got this. Feel free to PM me if you have questions.
Praying that 2018 is easy(ish) and peaceful for all of us. :-
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just started my second round....all good. Rads and steroids finish this week and have me wiped out but hope to get energy back in a week or two...
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Thanks, Azs and Schoolmom. Hoping and praying! Happy New Year to you both!!!
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Hi all, I was wondering if we have a "newly diagnosed bone mets 2017 thread or a Faslodex and side effects thread? I was recently diagnosed stage 4 and my head is still spinning. There is just so much info on this whole website that it is overwhelming and I am already there! Thank you for any thoughts about where to start. ( I have questions about dealing with side effects of the faslodex and also does it make depression worse? also, any helpful tips on how to keep working full time when I feel sick to my stomach from the faslodex and I think also tired.) Love, Jenny
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Spicedlife, I am sorry for your recent diagnosis. I know how scary and confusing the news can be. Once you settle into a treatment plan, things should get better. I am adding link below for the Faslodex thread. It includes "2014" in the title, but it is current. The first post is the most helpful part of the thread. It lists out suggestions to follow before and during your injections. They do make a difference. Some of the common SEs are in later posts. I have been taking Faslodex for about a year and a half and find it easy to tolerate. I did have some nausea with my first few injections, but I found that eating something actually helped. Did your MO give you a prescription for an anti-nausea medication? This is the only Bone Mets Thread. We have all been where you are now, so feel free to ask any questions you have. There are many helpful, supportive people here. Are you taking Xgeva or Zometa to strengthen your bones?
Here is the link to Faslodex thread.
https://community.breastcancer.org/forum/8/topics/816419
Hugs and prayers from, Lynne
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Hi Jenny,
First bit of advice, deep breaths. We have all been there, feeling the panic that we need to make decisions and learn everything instantly. Just keep in mind that bone mets are very treatable so you have time to get up to speed on the treatments.
I don't think there is a separate newbie thread for bone mets or Faslodex but don't feel you need to wade through everything before asking questions. You will find this site has an amazing group of women and men who are kind, patient and incredibly knowledgeable. If you have a question, just ask. Folks will be more than happy to jump in with advice if they feel they have a suggestion (and will just offer support if they don't know).
Second piece of advice, don't assume you will get all the side effects listed. There is usually a lengthy list that is more CYA than representative of a typical patient. I have not been on Faslodex yet but my onc has suggested this will be in the mix at some point (possibly sooner rather than later). Most of the ladies I know who have been on it do not experience significant side effects. The biggest issue seems to be at the time of injection as done incorrect it can lead to some lingering pain in the “butt" so to speak. I have heard that you should ensure it is warm when injected, injected slowly and, this may seem odd, but it helps to stand on the leg on the opposite side RO the injection.
In terms of work, I have not heard that Faslodex causes fatigue or nausea. I was diagnosed a year ago and am on my third treatment but continue to work full time. It’s not always easy. Ibrance definitely caused fatigue and Xeloda seems to be 1000 times worse (at least for me) in that regard but every treatment is so different. You just need to see how you go and make sure you give yourself the time you need to rest and recover. One day at a time will become your credo.
I hope this was helpful. I cannot speak highly enough of the folks on this site. While I wish with all the fibre of my being that you and others would not need to come here, you are with friends. We will help as much as we can with your journey.
Hugs. Pat.
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Welcome Spicedlife. Wish you weren't here but there are great people here who will offer help. I'm on Faslodex and I feel better after the shots now than the first 2 months. 50s girl gave you a good start with the Faslodex thread. I have anti nausea meds but don't have to use them. If your tired take a rest. Pamper yourself a bit. Mets diagnosis sets everyone in a spin. I was going through a rough time a few weeks ago. I realized I wanted to come here because here there are people who understand. Take care. Maire
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