First, thank you for all the sweet messages yesterday. You may have seen my post that my primary liver lesion doubled in size on everolimus/letrozole. I will be starting Xeloda today. Of course, being the negative Nellie I am, I'm already obsessing about the "what if this fails" scenario.
One of the sweet suggestions I was given yesterday was to distract myself with something fun. In fact, I had just signed a contract on this 102 year old house. After 30 years in my incredible home, I'm leaving. It is bittersweet, of course, but I'm trying to stay excited.
The downside is the FOUR sets of steps into the house. No way to get a golf cart into the yard. YIKES! It would be daunting for a healthy person. But, houses were selling before they were even listed, so I took what I could get in the neighborhood I wanted. Ill just have to figure it out. Way over budget too, but the need for retirement money is gone.
Hopefully I won't be too sick on the Xeloda to get moved. I want to have Thanksgiving in my gorgeous dining room. I told my guy, I have a feeling this is my last healthy holiday. I wanted to make a memory in a home he could keep if he wanted.
So, anyone want to help me pack!?!?
Love to you all. Thank you for sharing the downs AND THE UPS! Andi
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Wow, what a beautiful, stately house! Congratulations!
And I just love the heavily treed lot! A big part of why I chose my beach house was for the gorgeous live oaks! I put an al fresco dining area under their branches and hung string lights!
And I see what you mean about the steps...When I saw the photo before reading I thought "Wow, Andi's going to get her exercise!" - which is a good thing!
I'd like nothing more than to help you pack...Anything to get me out of Dallas!
Wishing you many years of enjoyment in your new home!
Thank you Lynn. The photo shows only one of 4 sets of steps! I may become a prisoner of my own doing.
I'm working with a designer on the exterior. We all laugh at it being an ugly duckling. Hopefully we will find a way to put some much needed lipstick on her.
Dinner under the trees. How romantic. I can imagine you there laughing with your friends. Toasting the good life. Such magical moments.
From the back of this house, you can see the city lights. Scott is taking me for a private picnic this weekend. We will have a bottle of champagne and a bag full of tacos. He's a good one!
I would love that Susan! Forest Park is close to Homewood. If you have climbing gear, maybe you could come over for lunch! BTW, I'm a great babysitter should you want to bring that new lovebug!! He is ADORABLE! I'm so jealous 😊
Yes, I wondered where your house was. I am in BHam alot and have another lovebug coming in December!
Hi Andi,
I don't think you are crazy at all! Congratulations on your new home! It looks absolutely stunning. I hope you will be happy in your new home and build some new memories. The steps may look daunting now, but just think of the exercise you will get.
I hope you do well on xeloda for many years to come!
You're welcome, Andi. I am doing well thanks. Up to my eyeballs as usual. I had my zoladex injection yesterday and am having my zometa infusion on Friday. My oncologist has given me the go-ahead to have stereotactic radiotherapy. Autumn is well and truly here, and I am continuing to forage. Blackberries are dying out, but apples and chestnuts are in season at the moment, so I have been busy!
Sophie
• in reply to
Hi Sophie - Can I ask you about your stereotactic radiotherapy? What is your situation (e.g. where are the mets? how many?) and for what reason they are doing the rads (e.g. pain? other concerns? or "just" to fight cancer?).
I'm having a hard time getting some rads for my widespread bone mets (no pain) and am trying to get my head around why so many women on the board are able to get them while I am not, so I'm redoubling my efforts to build a case for this...
• in reply to
Hi Lynn,
Yes, of course! Ask away. My oncologist called me last Friday to tell me that she was putting a referral through for me to have stereotactic radiotherapy if I was still willing to go ahead. I asked my oncology nurses about it several months ago (after consulting with my integrative doctor and a doctor in America who works for Life Extension. They both recommended it). But after consulting with my oncologist it was a big fat no from her. I wasn't happy with that response, so I didn't give up. This is my life after all and I am not going down without a fight for what I believe can help me.
I have been researching it, and then when I saw my GP last month for my zoladex injection I mentioned it to him and he said he would write to my oncologist and find out more. I was expecting another no, but when my oncologist responded she was more favourable this time. I read the letter she sent to her colleague in my patient portal and she mentioned that I have "responded extremely well to hormone manipulation" and how I would need another PET CT scan. So I think being stable and responding to treatment helps.
I have two tiny spots on my L4 and T8 which I want obliterated. I had a single fraction of radiotherapy to my L4 in August 2018, as I was experiencing pain following the start of treatment in the May. But I want this for curative purposes, as I read that if you have low volume bone metastases, as I do, then stereotactic radiotherapy can prove very effective.
I asked to see the images of the bone metastases some months ago and when my oncologist showed them to me she had to zoom right in for me to see them, as they are so small. So I want to get rid of them before they grow and fracture my bones. That's about it really. I would discuss your particular situation with your oncologist to find out if you would also be a candidate for stereotactic radiotherapy. Now I'm just waiting to see what the next step will be. I hope I don't have to wait long before I can have this done.
Take care,
Sophie
• in reply to
Thanks, Sophie, that's very helpful. It seems the key is to have just a small number of tumors, which is not the case for me. I may put out a general query to the community to see if anyone has had this treatment with more numerous mets...Maybe some doctor/facility somewhere is less strict about it? Like you, I'll just keep plugging away!
Thanks again,
Lynn
• in reply to
You're welcome, Lynn. Have you spoken to your GP/family doctor about stereotactic radiotherapy? I find that oncologists respond better to their peers than to us! Or if that's not an option have you looked into other possible treatments like hyperthermia, cryoablation, mistletoe therapy or something else? There is so much out there to try! Olivia Newton-John is using CBD oil for her metastatic breast cancer, although I think she uses THC, which is illegal in the UK but legal in some parts of America, I believe.
Let me know how you get on in your research! As Nancy once mentioned, I want to make it hard for the cancer to kill me!
Not sure if one if the things I have is the same as yours. I do as little reading as possible. But I have several holes on the L4 and T8 (Some number like that) that was caused from the breast cancer. The pain I had when walking made it impossible for me to even walk 1/2 block and I do not drive. So they sent me to a pain specialist and then my onco wanted me to do radiation on my lower spine. Five days a week for six weeks and I said no right off the bat. That would be almost the whole summer.
So I said no to the radiation and now although they found some kind of "masses" in my lungs on my last CT scan, she said one of the holes in my lower spine had closed up (I guess that was supposed to be the good news). They have nothing to compare these new masses found on my CT about three weeks ago so I have to have another one, just of my throat, on November 20th, the day before I meet with my onco. She gets the results within hours but these way the radiologist doctor can have something to compare it to. I am less upset about that than I am that she said regardless I will have to start a new treatment. I really do not want to go on Xeloda. She did not tell me this...she told me not to worry, that she will help me with the side effects (which upset me right then). Her PA who if I told my onco that he told me this, she would be furious. He likes to think he is a doctor. I know to become a PA is not easy but he is NOT a doctor.
He saw me in there about a week ago for my bloodwork , injections and meeting with pain specialist. He is NOT supposed to tell me things that my onco knows. that is HER job. He saw me in the room, warming up my vials and said to me "Oh, I heard they found something on your lungs. He said Do not worry, I am sure it is not lung cancer, but it will be from the breast cancer. My ONCO never once mentioned anything about lung cancer although I felt she was holding something back. She does not tell me well, it could be or it may be UNTIL she knows for sure.
He then says it looks like you will be going on Xeloda next. I was so so angry but I didn't like him know. I didn't ask my onco what the next drug would be bc I did not want to look it up or know and she NEVER mentioned the possibility of lung cancer although I felt she was holding her opinion back.
I was annoyed that he felt he could tell me these things. If I told my onco that he told me this, she would be furious. He got in trouble once before for telling me something he had no business telling me. I think it makes him feel like a doctor.
But I read already its one of those drugs you stop for a week and I had major problems with Ibrance. So I am upset he mentioned it bc I thought I will enjoy as much as I can for now and worry in November, not now.
But of course since he told me , I looked up the drug and was not happy about the side effects. He should have NOT said anything to me at all.
I am telling her, (if the case it is just the breast cancer in the lungs) that I want the lowest dose. I do not have children or a partner or siblings or nieces or nephews, so unlike many, I am NOT willing to put myself through hell for some more time.
So I am going to see what she says but I am also going to tell her I want the lowest dose possible. I prefer to take it every day, not with that cycle crap. Just having a bad day.
So without any radiation (and the pain doctor has me on four perocets per day plus gabapentin - 600 mgs.). And without any radiation, a hole has closed on its own (I did not have tumors, I had holes from the cancer eating away, so I was told). I was not going to spend most of the summer doing radiation. So glad I did not, but I realize other people have different issues so it may work for them.
I would be angry with your oncologist’s PA too if I were in your shoes. If there is going to be a change in treatment or anything new show up, that’s down to your oncologist to tell you. I would consider telling your oncologist. This is really unacceptable. Look how he has upset you, and what was it all for? To make himself feel more important?
Our medical team has to tread a fine line, I get that. But they need to be compassionate and kind in dealing with us and see us as people with feelings that need to be taken into consideration.
It sounds like you have lytic lesions in your bones, which is what causes the holes you mentioned.
I think there is a lot that is quite personal to us with this disease. Whereas I’m happy to have radiotherapy again, it isn’t for you and that’s fine. We all need to weigh our treatment options and then try to move ahead with that.
Be gentle with yourself after the radiation. They told me, "no big deal! Back to work the next day." They failed to tell me about the following weekend of pain flares and weeks of fatigue. I thought it was progression it was so achy. Don't want to scare you. Definitely tolerable and well worth it. I just wish they had told me.
Thanks! I had palliative radiotherapy in August 2018 so I know what to expect. This might not be as bad though, as it's targeted. I was in a lot of pain for five days after treatment. The chestnuts are tasty. I am chomping on a batch I just cooked.
Love love your new house. Please post pictures of your dining room when you get it fixed. I can only imagine how grand it must be in a house that’s 102 years old.
Also sending you best wishes with your new treatment.
Good luck on your new treatment and hope you can enjoy a great thanksgiving in your fabulous new home ...what a fun project to keep your mind busy ! Enjoy ! x
Hi Andi. Beautiful new home! It’s truly gorgeous. I too start Xeloda today😄. Let’s be positive and believe that this treatment is THE ONE that will eliminate our cancer cells. Today is the feast day of St. Therese of Lisieux. She is a saint of miracles so do believe and have faith. Miracles happen🙏. New home, new treatment, new beginnings...❤️Maria
I have to start Xeloda in November more than likely. I am more upset about that than by they found, some masses in my lungs). I was on Ibrance and my week off was hell. I was then put on Verzenio which I am still on. I had to go on the lowest dose and that was the perfect combo. I did not feel as tired. I liked that I did not have a week off. I almost feel normal. Now, I am upset that the PA who ran into me, told me that was her plan. She did not even tell me and I didnt want to know what the next med would be.
Could you list how you feel on it and how many mgs. you are one. I am more upset at the chance in medication than what they found. I find myself so so angry that I have to start a new drug. Even though I am more than aware that everyone reacts differently, I would be interested in knowing how it works for you.
Good luck. I keep reading about this hand/foot syndrome. As it is now, my legs are totally discolored, both feet now are severely swollen and loads of skin is coming off my hands. I think it is from stress. So to read this has something that will possibly make my foot and hands worse is upsetting to me. I rarely even venture outside the house. I had to take car service to go five blocks and home again because I could not get my foot into my mule and that was the only shoe I could wear.
Went to four vascular surgeons. Did not like any of them. The last one wrote me an rx to wear compression stockings but all the way to my waist. I did not want them. I wanted them to my knees but he said the other ones would be better and when I asked how long I would have to wear them, he basically said forever so that was a no for me.
I just want to see how others are doing on it. Or if there is another drug that I can take every day. i hope you do well on it and would like to know, if you do not mind, how you feel on it. Good luck.
Hi. I’m on the lowest dose of Xeloda. 500 mg twice daily with Exemestane (Aromasin) 25 mg once at night. My oncologist and I are trying this as we came across a study/trial using this combination. It’s a very new and limited trial but we will see if it works. Here’s the link if you are interested researchgate.net/publicatio...
I’m only on my 4th day but so far, I’ve none of the hand/foot issues. I have felt queasiness on my 3rd and 4th day but it went away after a while. Hope this helps.
Thank you, Maura. It has definitely given me something to look forward to. After you've been in a house for 30 years, there isn't room for anything new and you've rearranged in every conceivable way. It's so much fun to shop for cool things tha I can afford! I'm having a blast!
Its beautiful. I hope your next treatment does well and you have more time then u think. I just hit year 9 Sept 22. I do ok but I could not do those steps.
9 years! That would be so wonderful. I have only just found true love, and it tears me up to think of leaving him. He needs me to show him how to relax! I'm a pro 😉 Thank you for the encouragement and HOORAY for you!
Hi, I am familiar with the Homewood section B’ham . The area has lots of trees.
I have been wanting to make a move but still working feel too much to balance. Good to know that you have the energy even with doing chemo. It is important to do what makes you feel good and not dwell
On negatives of our disease. Lots of luck on the house and good long results with new treatment.
How do you know Homewood? Are you close by? If so, we should grab lunch sometime.
I just read you are starting Affinitor. Use your mouthwash for the first little while. I only had 2 mouth sores in the very beginning. My face and ears swelled so I looked puffy every now and then. The swelling moved to my ankles, so i took lasix. Unfortunately i was also taking prilosec which caused a scary-looking subconctival hemorrhage. No damage, just freaky. All in all though, I felt sooooo much better than on Ibrance.
Oh! Almost forgot. They had me put the Affinitor in a gel cap and swallow it in a spoonful of yogurt to keep it from touching my mouth. It seemed to work@
Very nice. If the stairs become to daunting maybe you could put in a lift. Not sure if it is doable but just a thought. Changes like that are always daunting but it will work out. All the best.
Unfortunately the chairlift people said the terrain was too rough. I have a friend working on a "mining cart" and winch idea. It's like an episode of McGyver! Thank you for the well wishes 😊 Andi
Hi Andi, I love your new home! That will definitely distract you from being a patient. It will keep your mind occupied and full of plans for making memories of happy days.
We moved this week with my husband’s job to Central Europe. So everything has changed again. I don’t have time at the moment to even think of my diagnosis (I hate using the C word) and I’ve decided not to disclose it in our new lives which is liberating for now.
I wish you all the best as you settle in to your new home. Keep us updated on how it goes. I love that you have made such a bold decision but there is nothing like MBC to focus the mind. So happy for you.
And don’t worry about those steps, you will save on the gym membership!😁
I love the way you think! Wow! Central Europe in the midst of a pandemic with a tough diagnosis. You are one tough cookie! I get the not telling anyone. Only my closest friends know. All the rest just think I'm lazy and in a bad mood!! Only kidding. I don't want to be treated differently so I get up, get dressed up and do my best to act like nothing's wrong. You get up and move half way around the world! Congratulations! I hope you thoroughly enjoy your adventure. Stay safe and healthy!
Thank you. It’s not too far though. The UK is under a three hour flight away so quite close for us really. When we made the decision a few months after I was diagnosed I said yes because I initially thought I wouldn’t be around and my husband would need the distraction. How wrong I was! I am not in the excruciating pain I had back then and my treatment is working. The move really did give me something to look forward to and in hindsight it was definitely the right decision. Covid-19 wasn’t in the picture back then but it’s safer here than in the UK so....
Our heavy baggage consignment arrives tomorrow so plenty to keep me busy. Go easy with your house move and try not to stress. The important stuff will get done and the rest you can do at your leisure.
Thank you Joanaaaa. I hope the weather where you are is as gorgeous as it is here, and you have a chance to enjoy it!
Be well, Andi
The house is gorgeous and will keep you busy decorating. Find a space downstairs for your bedroom (hopefully a full bath downstairs). That way not as many stairs.
There is a beautiful sunroom I'm putting a daybed in. Unfortunately, I'll have to take sink baths as there is no shower. Or, maybe I'll just go bohemian and stop bathing!
Maybe in the future you can add a shower. A sunroom would be wonderful to nap in. Fill it with plants and it could be your oasis.
I have to go for an MRI to see if my spine is pressing on my spinal cord and to check my left shoulder which is causing me a lot of pain. I saw my orthopaedic surgeon who is amazing. He always shows me scans etc whereas my oncologist just says it was good or bad.
Having my bone scan this morning 🤞🏻. First one after 6 months of chemo so I’m really nervous. It always takes a few days for the results so I will be a wreck till then which I know you completely understand.
I loved your thought that we don’t have to worry about our retirement money...perhaps if you can use some to put in a shower?
I live in very hilly NZ where our capital Wellington is so hilly that people do put in small funiculars to get themselves and groceries up the hill to front door from their cars. I once googled the manufacturers for a friend with a cottage up hi at a lake... might be a good option for you to not stress about facing those stairs when you don’t feel well.
I've been learning about those! They're so cool. We are trying to create a budget, homemade version. I love the terrain here, but it can be challenging!
One day, I would love to see New Zealand. It intrigues me more than anywhere in the world.
Yes it's a nice day today, yesterday we had lots of rain and I think there's some rain forecast for the next few days, but not to worry well take it as it comes
When my middle daughter was 3 or 4 we took her to the hundred acre wood to play pooh sticks on the bridge. It’s a real place in Surrey. I had so much fun, and she remembers it as one of her best childhood days out. 😊
How I wish I could have taken Tucker.! When he was little, all 3 TVs had to have a Pooh video going at all times. Little did I know then, Pooh was his first expression of autistic focus. The boy loved his Pooh!
Stunning home. Enjoy every moment of decorating it. For amusement, I finally am getting time to clean out attics here...a pandemic exercise. Little pack rat here found swatches and chips from decorating our first home, as well as early days in this one. We have been here 30 years! Laughed as I also found holiday cards sent to us in 1989...people were excited that I was pregnant and had bought a new home. Loving the trip down memory lane.
That's the best, isn't it? Little bits and pieces that bring back lovely times. It's funny all the expensive clothes, shoes, decorations etc. that have gone in the charity pile, but drawings and little gifts from my son like shells and rocks are carefully packed in tissue for the move. They are my treasures.
What a gorgeous house! I hope you are able to make many good memories in this home and enjoy it for years. Who knows? Each day is gift indeed, and how wonderful you get to spend your days somewhere that feeds your soul and spirit.
Yes. I want to build a home there with my sweet man and my pups. Whether 6 months or 6 years, I need a place to make me smile! Thank you for your kind words.
What a beautiful home, Andi! And I totally agree with your philosophy! I bought a 100-year old home in Seattle just six months before my MBC diagnosis. (3 1/2 years ago) It’s main floor had been updated and remodeled and I decided to remodel entire basement and convert attached garage into craft/storage/laundry room. I’m using a chunk of retirement money but feel such joy in this “last home.” YOU GO GIRL!!
No, probably won’t be finished until early next year. But I feel much like you—enjoy so much dabbling with home and it’s decor.
And yes, I love Seattle. Settled into a quiet old neighborhood after an amicable divorce. Have a wonderful ex-husband, two beautiful adult children, and now share home with two beloved rescue dogs.
The house is fabulous. I hope you give us peaks as you have time. It looks huge. I am in the Florida panhandle so we are only about five hours away. Best wishes for a safe move. Blessings, Hannah
Thank you, Hannah. Were you hit by Sally? My company came down and did tetanus shots for several clean up crews. I hope you fared better than the folks we visited. So much water!
Thank you for the encouragement. I'm a little freaked out by the monumental task....but it will work out 😊
Thanks for volunteering. We fared well, but lots of folks didn't. Everyone has new roofs from Michael and some leaked and ruined their houses again. We were fortunate through Michael and Sally. Most of Sally's damage was further west. But Panama City had flooding in low lying areas. Again, thanks for volunteering. Blessings, Hannah
That is a beautiful brick house, but the stairs are a bit much, especially as we get older . For all of those people who want to get their steps in this would work , but the chance of falling is greater with so many stairs . I do hope/pray your holidays will be memorable. None of us know's how long we will be here on this earthly journey. Enjoy everyday even during these Covid-19 challenges. GOD bless you, and your family
It is a beautiful beautiful house. I envy you. Do not think or tell your mate "that you think it will be your last healthy holiday." Enjoy every moment of moving into the new house, new surroundings, making new friends. Focus on the positive so that you can enjoy this new chapter in your life. I am going to have to switch over to Xeloda. I did the Ibrance thing, am currently on Verzenio. I am okay with the Verzenio and I got myself to a place that is good. Unfortunately, they found something on my last CT scan and I will have another of my throat in November so that they have something to compare it to since it did not show up three months earlier. I am more annoyed and a bit upset that I have to switch over to Xeloda. I still do the falsodex injections and the xceva(?) injection.
I keep delaying seeing a specialist and my legs are so discolored (from pooling blood) and my feet so swollen that I can't even get them into the mules anymore. I am more angry that I have to start with a new medicine. I am going to tell her right off the bat that I want the lowest dose they have I do not even want to start with a high dose. I wish I had something as exciting as to move into a beautiful house like that.
I live in Brooklyn in a small studio. Odd, this apt. has become my whole life now. It is a beautiful day out in congested Brooklyn, but I cant get my feet into any shoes.
On top of that my neighborhood in Brooklyn, Midwood, has become the hot spot in Brooklyn as the spike in covid cases rise bc I live in a predominantly religious Jewish neighborhood and they do not believe the virus is real (per Trump) so they walk around with no masks at all in large groups. The governor has said he will close down the schools and all their stores. Now we have police cars going around with their intercom telling people they have to wear masks and socially distance even outside or they will be hit with a fine.
I wish I had the opportunity to move into such a beautiful home. It would take my mind off of everything. Something to look forward to. Unfortunately, I made bad decisions so I am just living off my SSDI and that is it. But it is what it is.
That is gorgeous and please show photos once you have moved in and decorated. That stairs would get me though LOL.....
I would have to have someone build some kind of chair that would take me from bottom to top (or at least start walking up an hour before I need to be home.) LOL
Enjoy it. I am sure you will have many years to enjoy it and that keep that in mind. It is great to let go of something and start anew. This move will keep you busy enough.
Way over budget. That sounds like me. I hope you enjoy your first Thanksgiving with your family in your new dining room. This sounds like it should be keeping you busy and taking your mind off the other stuff. Put that way way back in your mind and live in the moment. Congrats!
Thank you so much! You are very kind. The stairs are ridiculous, but I'm determined not to let this disease take anything more from me. Somehow, I'm going to do it.
It is a big house, but not as big as it looks. 3 bedrooms and 2 and a half baths. NO storage of course. Living in Alabama is much different I'm sure than being in the epicenter of culture and city hubbub! I'm so sorry you feel stuck. You're having such a hard time.
After only a few days on Xeloda, it doesn't seem bad at all. No nausea. I haven't had a mouth sore...yet. it's probably too early to know about hand and foot. I am a wee bit dizzy and sleepy. All in all much easier than Ibrance.
Take care of yourself and good luck in November. I sincerely hope it is nothing and you can stay with Verzenio.
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Congratulations! 
. For all of those people who want to get their steps in this would work 
Eribulin vs Xeloda
What treatment for brain Mets?
