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  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2018

    Lisa, is that the ship they used when filming Master and Commander with Russel Crow? If so, I remember seeing it at dock when I was there......it's such a beautiful sight under sail. Can you imagine a fleet of these beauties? Wow!

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  • SuefromSydney
    SuefromSydney Member Posts: 126
    edited November 2018

    Good morning all! Thanks for starting the lovely thread, Chrissy, and for everyone else for building it into what it is.

    I've been posting in Chemo starting Sept 18 mostly, and am off today for my 4/12 weekly Taxol. I've had a lumpectomy and axial clearance, and 3/4 AC. Had to stop the AC because it was affecting my heart muscle function. Cardiologist says that will repair, and though I'm very ready to work on that, I'm inclined to wait and see. Your current heart problems are a bit terrifying,Chrissy! I hope they resolve and let you return to normal activity.

    Anyway, here's another sailing ship - much more modern, but lovely all the same. This was our home for a week in July last year off the Croatian coast. Brilliant! This September we were set for sailing holiday off the Maine coast on a 140 yo schooner, but had a better offer - surgery:-/

    Blessings to all, and enjoy a short sail in the sun. Ivan the cook will soon have your delicious lunch ready.

    Susan

    image

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2018

    Hi Sue! Unfortunately there is nothing they can do for diastolic dysfunction except don't put the heart under strain.......lol.....No exercise for me unless gentle walking and don't get over tired.........yeah right. With this disease and treatment one is always either bouncing or sleeping.

    Yep, that AC is a harsh one for sure so the Taxol should feel like a doddle. As Trish suggested further up the page, eat ice or iceblocks from the beginning of infusion until you are done that way you mouth lining and tongue will be a bit more protected from mouth ulcers and horrific taste change.

    That sailing ship is a beauty! Lucky you for being able to call it home for awhile. I would love to do that but my hubby is a true blue landlubber. He came to Australia as an immigrant when he was eleven from Holland and apparently he was sea sick pretty much the whole way so now, he just refuses boats, ships, liners out of hand......can't say I blame him as it would have been six weeks of pure hell.

    Take care all.

    Love n hugs. Chrissy

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  • bootsie7
    bootsie7 Member Posts: 114
    edited November 2018

    Thinking about you today ChrissyB...hope all goes well for you today.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2018

    Hi girls, finally home after a long day. Well, the lowdown of todays visit with the onc. He is lovely first of all and doesn't shy away from going through all the options which made both my daughters very happy. There is a long list of options but for now we are going to stick with the Femara and add in Xgeva. I have a referal to get some bloods done and an appointment on Thursday with the dentist for a check up before beginning the Xgeva. He is meeting with the cancer conference tonight and will organize for the radio oncologist to contact me re some rads to the mets that is giving me the most pain and problems.

    So, for now it's still pretty simple......thank goodness, but he has listed all the options for me to peruse.

    I have a builder coming in the morning to workout a quote to redo my bathroom......yes, it's finally going to happen and I can't wait! Probably won't happen this side of Christmas but early in the new year but that is just fine for me.

    Hope everyone is doing okay.

    Love n hugs. Chrissy

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  • bootsie7
    bootsie7 Member Posts: 114
    edited November 2018

    Hi ChrissyB,

    It is good you have some answers and direction with treatment. Will be watching on here for good results.

    Having a bathroom redo is something good to look forward to. 😊

    Please take care




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  • bootsie7
    bootsie7 Member Posts: 114
    edited November 2018

    Found out my bone biopsy results and it is Bone Mets from the breast cancer.

    My onc said that she feels it is slow growing or inactive as nothing lights up?? She will see me on the 3rd. She is suggesting to start me on Anastrozole. SOOOO many side effects.

    scared.

    There has been many bad surprises since my May Dx ....not sure how to proceed with a positive outlook.

    Just needed to vent a bit.

    Thank you





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  • Wren44
    Wren44 Member Posts: 8,585
    edited November 2018

    Hugs Bootsie. Never fun to hear. I took anastrazole for 5 years with minimal side effects. I took Claritin antihistamines with it (not the decongestant kind). Not everyone gets the side effects and there are other AI kinds to try if you do.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited November 2018

    Hi Bootsie, oh big fat bother to the news of the bone mets......(((((((hugs)))))) for you girl. I'm still just bone mets and was given Anastrozole as my first line treatment.......yes, you are right on the list of side effects, many and varied but as Wren said, if that one doesn't suit you as there are too many se for you to manage, there are always others that you can go to. I changed to Letrozole after fifteen months and am still on it and it's almost ten years with mets for me. Hang in there girlfriend, you may have none of the nasties at all.

    Just had a call from the radio oncologist and now have an appointment for next Tuesday. Yay!!!

    Take care all.

    Love n hugs. Chrissy

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  • bootsie7
    bootsie7 Member Posts: 114
    edited December 2018

    Happy Birthday Chrissyb...Hope your Day is a good one


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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited December 2018

    image

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2018

    Thanks Bootsie and Lisa, I've had a lovely quiet day and have just returned home after hubby took me out to celebrate. 😁

    Had my first Xgeva shot yesterday and am feeling quite fatigued today........hopefully I will be back to normal in a day or two. I saw the radiation oncologist yesterday also and I start rads to my shoulder and ribs on Monday.......thankfully there will be only five treatments so I will be home again on Friday night next week.

    Christmas is fast approaching and I am so not ready for it.........I guess I'll have to get my skates on and get it all organized in the last few days before the big event.......it seems it never rains then it pours......lol.

    Take care all.

    Love n hugs. Chrissy

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  • Wren44
    Wren44 Member Posts: 8,585
    edited December 2018

    Chrissy, Happy belated Birthday. I'm glad you had a lovely quiet day. Perhaps scale back the Christmas organizing and stay sane. You're right about not having much time.

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  • karen1956
    karen1956 Member Posts: 6,503
    edited December 2018

    Happy . birthday Chrissy!

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2018

    Thanks for the Birthday wishes Wren and Karen.❤

    Wren, as for scaling back the Christmas thing, if it get scaled back any further it won't be happening at all.....lol. I just have to put some things away in my guest room, sort out the fridge to make room for stuff and then the only things my daughters will allow me to do is bake the ham on Christmas morning and make individual fruit mince pies and individual almond rounds.........the rest, I'm told, will be done by them including the shopping.

    We usually go to my youngest daughter's house but as the grands are scattered all over and are not returning for Christmas this year, my daughters decided to come to me instead.. so I didn't have to travel again so soon after Rads were done.

    I think Summer has arrived.........it's thirty seven degrees celcius here right now outside but thankfully the house has thick stone walls so very cool inside.

    Love n hugs all. Chrissy

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  • SandyFish68
    SandyFish68 Member Posts: 1
    edited December 2018

    Hi Everyone. I’m Sanfish68. I found out 3 weeks ago I have breast cancer. I am going to have complete Mastectomy on right breast Dec 11th. I would like advice on reconstruction...my daughter and friends want me to do this. I am doing for them not myself. I have asked them nicely to back off, however they treat me like I’m sick. I also have brain tumors so now they are the opinion that I can’t think or make a rational decision for myself...I am meek in nature and don’t stand up for myself. I want to scream and shout at them that I don’t need a babysitter they watch my every move ! Please does anyone else have this problem how do I get them to back of

    ,

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  • SuefromSydney
    SuefromSydney Member Posts: 126
    edited December 2018

    Happy Birthday Chrissy! And sounds like you're honing your delegation skills beautifully:-) It's a lovely chance for your daughters to have the fun of nurturing you and the family. And of course your bed is close by if you need a little rest.

    Sanfish68, I do feel for you! Perhaps you can reassure your family that you know they are trying to show their care for you, and then explain what would really be helpful. Very hard to break such an established pattern, but it could pay off. Praying for that.

    Susan

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2018

    Thanks Susan for your birthday wishes. Yes, you are right, my bed will be close by should I feel the need for a nap.....lol.

    Hi Sanfish68 and welcome. I understand just how hard it is to feel so smothered by your family but try to take a small step back and look at it from their point of view. You are very special to them, they fear for you and the possibility of losing you too soon hence the wanting to wrap you in cotton wool. My suggestion is, sit them all down and just explain to them that your diagnosis has not changed you, you are still capable of rational thought and making decisions for yourself. Thank them for their love and care but ask them to give you space to be able to come to terms with your diagnosis.

    As for your reconstruction and doing it for them and not for yourself, I think that is definitely the wrong way around. What you choose to do is your choice and not your family's. Reconstruction is huge so please, do what you want to and don't do it just because your family want you to.

    There are a few different methods of reconstruction but it is best to discuss them with your plastic surgeon in order to do what is best for you.

    I wish you well with your surgery on the 11th. Please pop in and let us know how you are.

    Love n hugs. Chrissy

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  • SoCalLisa
    SoCalLisa Member Posts: 13,961
    edited December 2018

    I chose not to have reconstruction for my own sake. That was 18 years ago and I would not change it. The plastic surgeon said I could change my mind later if I wanted to.

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  • bootsie7
    bootsie7 Member Posts: 114
    edited December 2018

    Hi Sanfish68...I chose Not to have reconstruction. I only started with my DX in May of this year. I am not sorry for my decision. Sure that won't change. That being said it is a very personal decision. Not one someone else should make and in many cases it doesn't have to be decided immediately . I hope you can discuss your feelings with family. The support is wonderful and a caring family has their fears to deal with and it is hard for them to except the DX, but it is ultimately you who has to go through the surgeries and treatments so your decisions need to be respected.

    Hope you can find the right path for you to take. As your surgery date on the 11th is close, will keep you in my thoughts. Will looknfor a post from you when you feel up to it.

    bootsie7

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  • bootsie7
    bootsie7 Member Posts: 114
    edited December 2018

    Hi Sanfish...I chose Not to have reconstruction. I only started with my DX in May of this year. I am not sorry for my decision. Sure that won't change. That being said it is a very personal decision. Not one someone else should make and in many cases it doesn't have to be decided immediately . I hope you can discuss your feelings with family. The support is wonderful and a caring family has their fears to deal with and it is hard for them to except the DX, but it is ultimately you who has to go through the surgeries and treatments so your decisions need to be respected.

    Hope you can find the right path for you to take. As your surgery date on the 11th is close, will keep you in my thoughts. Will looknfor a post from you when you feel up to it.

    Bootsie7

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  • Wren44
    Wren44 Member Posts: 8,585
    edited December 2018

    Hi Sanfish, I didn't have reconstruction either. I think it was because I was large enough for it to make some clothes hard to wear. I'm also married and he didn't care. Now the only problem is whether to do the other one to match. I recently got a smaller lighter prosthesis and have decided to put more surgery off for a while. If you want to reconstruct do it. If not don't let then pressure you.

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  • jessie123
    jessie123 Member Posts: 532
    edited December 2018

    I am also newly diagnosed -- so have to make the same decision. I've talked to 3 of my friends who have had MX with reconstruction. All three told me that if they had it to do over again they would NOT have the reconstruction. One of them got an infection in her reconstruction and had it taken out.

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  • bootsie7
    bootsie7 Member Posts: 114
    edited December 2018

    Help...I am frozen in making a decision. I have been on an unwanted roller coster ride since May as I previously posted. Saw my onc on Dec 3rd after bone mets dx from bone biopsy and she wants me to start anastrozole.(now it seems the mets are scattered in a lot of different areas of my skeletan.) Wanted to add Ibrance too but I do not feel good about that. With side effects I prefer to start with one and see how I do before adding another. She said she is ok with just starting the one for now. I haven't started the pills yet, was waiting for blood work as my levels have been low and I don't want another infection and hospital stay! I am thinking I want to go to get another opinion on my scans, pathologies etc. Make sure I am starting the right treatment. She says this is the protocol for my dx and what is avaiable right now for treatment.I just feel so unsure of myself.

    Onc says without treatment..no hope.

    I know no one can make a decsion for me but I do know some of you have been through much and farther along in treatment. I respect and appreciate everyones info.

    Maybe I just need this forum to vent and put my concerns out to those who have experienced many of the same things with a cancer dx. 😕

    Thank you for listening.

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  • chrissyb
    chrissyb Member Posts: 16,818
    edited December 2018

    Bootsie, when I was first dx with mets,(almost ten years ago now), I was given Anastrozole (Arimadex)which did ok for fifteen months before it failed. Then I was put on Letrozole (Femara) which got me to NED and kept me there until recently. My onc is talking Exemestane (Aromasin) and Everolimus combo but wants to see if the Xgeva he had added is enough with the Femara or if I need to change.

    The whole idea of treatment as a stage four is to give the best possible quality of life while keeping the cancer controlled. What your onc is suggesting certainly is on the list of recommended treatments at this point.

    I know keeping track of the side effects of all these drugs is important, but you must also remember that not everyone is adversely effected by them.

    Good luck with your choice. Oh by the way, if you really want a second opinion there is no reason why you can't get one.

    Love n hugs. Chrissy

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  • dtad
    dtad Member Posts: 2,323
    edited December 2018

    Bootsy7...so sorry you are going through this. Just want to say if you are interested in a second opinion may I suggest getting one at a major university teaching hospital. Good luck and keep us posted. We are all here for you.

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  • jessie123
    jessie123 Member Posts: 532
    edited December 2018

    The two top cancer centers in the U.S. are M.D. Anderson in Houston and Sloan Kettering (sp) in I believe N.Y. They also have clinical trials if the drugs don't work. You probably already know this, but just in case I decided to post it.

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  • bootsie7
    bootsie7 Member Posts: 114
    edited December 2018

    I am under the care of MO from a Comprehensive Cancer Center. It is 5 minutes from my home connected to my local hospital. I do have another highly regarded hospital in Chicago where I am considering going. I just feel I should have another pair of eyes to review all my info. Dana Farber in Boston was also recommended, but farther away and I have called every day for a week with no return call. 😕

    In the mean time I haven't picked up rx for anastrozole yet and the last time I had chemo was 10/4. (stopped after 2nd dose due to infect & bone mets dx)

    I guess I am my worst enemy right now with my indecisive thinking. My BS says ( with a smile & hug) that I am an over thinker. She is right. 😯

    Thanking you all for input and kindness. Big Hugs to everyone.

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  • jessie123
    jessie123 Member Posts: 532
    edited December 2018

    You may be an over thinker--- to me that's not a negative when it comes to something as important as your health. I do the same thing. My internist told me to get a second opinion on my biopsy even if it was negative. I never would have thought of that. I think you are making the correct decision to get the second opinion and even a third opinion if necessary.

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  • Wren44
    Wren44 Member Posts: 8,585
    edited December 2018

    you could always start Anastrazole and change if the second opinion thinks something else would be bette

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