Ibrance (Palbociclib)
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Hi, I've been posting a lot on liver mets thread. Go there to read up on my exciting news. Some of you already know. It's just too long to write again.
Anyway I have a very busy week plus I'm working on a sewing project for a friend.
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NettaGr, my MO prescribed me Melatonin, when I was first diagnosed with MBC. It didn't work how I expected and I didn't take it for long. I use tea instead, that calms me down before bed
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in terms of melatonin or any supplements or medications, we all have to chose what sits well and feels right for each of us individually.
For me at this time and since I was diagnosed last year, I am really feeling appreciative of the 20mg of melatonin at night before bed.
I know that the prescribing doctor of the melatonin is very well-researcher and informed and I trust their medical advice. So far, it hasn’t steered me wrong 🙏🏾
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A friend here just sent me a private message and asked about wigs since baldness is my jam. Here's the message I sent in case any of you are interested:
I ordered wigs by the dozens for our support center from PaulaYoung.com and from Especially Yours and was always happy with them. They are reasonably priced, especially if you get on their email list and shop the sales. You should never pay the catalog price for them. I have friends who have chosen to get custom human hair wigs made but those are very expensive and take a lot of care. I use acrylic ones that I can just wash and drip dry and they don't need setting.
Love from PatG
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Grannax, would you mind cutting and pasting your liver news?
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Thanks to all for the great suggestions for saving particularly pertinent information! Pat Mc, I just saved your wig info!
Grannax, PLEASE do cut and paste your liver news....it sounds GOOD!!
Good luck to all of us with scans this week; it sounds as though there are a bunch of us!
xox
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And Seaway, thanks for slogging through all of my text and photos on the trip! I'm still rocking and so glad to be home! Thanks as well for the cannabis information.
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well I tried I do not know how to do it. There are several long posts I'd like you to read. Just click on my name and you can read the most recent four on liver mets. You don't need to comment there
It's about a fashion show I've been invited to be in on Friday. There will be eight survivors wearing designer gowns walking the cat walk. I also get my hair and makeup done. Go to Say Yes to Hope. Founded by Suzanne Lindley. She a thirteen year survived of colorectal cancer with mets to her liver. Her foundation is about treatments for liver mets in any stage IV cancer.Getting info out there about Y90 and other local treatments to liver. She credits y90 for turning her prognosis around and allowing her to live this long.I had to to write a one paragraph summary of my story.
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pasting in your post Grannax
Sep 29, 2018 09:37AM Grannax2 wrote:
Ladies, I have an unusual opportunity and have to make a decision soon. Help
Have you heard of an organization called Say Yes To Hope? I talked to the founder yesterday, she wants me to be a participant in their Fashion Show next Friday. So, I may sound bold, confident and fearless on this thread but when it it come to walking a Cat Walk runway I'm a chicken. Not on my bucket list!
But, I do admire their platform. The founder, Suzanne, had colorectal cancer with mets to liver. Thirteen years ago she had a y90! She's alive and well. Basically, they are promoting and educating doctors and patients about the role of y90 in advanced cancer patients.
She told me that I will be pampered all day. Hair, make up and a designer gown. So I go in on Friday morning for the fitting/ alterations, etc. Also, interviews and photography. OMG. And she said I get to keep the gown! I like the thought of dressing up like royalty but walking the runway feels like walking the gauntlet to me. I don't like being in the spotlight, I turn into a shaking mess, my throat closes, I look like a deer in the headlights. What am I to do?
I also have to write one paragraph about my story ONE paragraph, are you kidding me? I couldn't fit my story into ten paragraphs! Then I have to give them five words to describe myself. Help.
Oh, and the Media will be there. Evidently, they have this type of fashion show all over the U.S., even New York City! I'm just kinda shy really, not a celebrity wanna be. Plus, I'm 70, have one reconstructed boob and no right boob( skin died so reconstruction failed), overweight, short legs ( not a long legged strutting model type) and too many scars to count. She said most of the gowns are strapless! Ummm, how is that going to work?
To say I'm nervous is an understatement. Part of me wants to say Thank you but No. I do think if my DS would walk me down the runway, I would be OK. I just found out about this yesterday! There's a very good chance he has plans or has to work. Maybe my SIL would do it. As you can see I'm a confused mess
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And let me say this is super exciting for you!!! You must post some pics from this event!!! I saw in a follow up post that your son will be escorting you - which is awesome!!!
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Question: my chemo brain is getting bad. Long term memory is just fine but I am struggling to retain info that I got just a moment prior. It’s making it difficult to effectively do my job.
I saw somewhere (obviously I didn’t use all the methods sldescribes here to save it - but I think it was in a Facebook group maybe) that someone’s MO prescribed a med to help address this issue.
Does anyone know what this might be? I want to ask my MO about it at my mid Oct appt.
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Grannax....how thrilling! I would be a nervous wreck too but what a wonderful experience and for all of us in Stage 4, I believe our lives are about experiences now...... Packing in as many as we can to leave as a legacy, to me, is so important. I want to be remembered for the things I did, not for the things I missed out on.
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Grannax, I have a word for you....PIONEER! And another....WARRIOR WOMAN (okay, that's two)! I think FUN would be another good one for you. SUPPORTIVE works too.
You are going to be just beautiful. I would speak up and say I don't want a strapless dress but if that's all they have, ask for a fancy wrap. But be proud of every scar. I wish you could wear a wrap that says, "It's not what I've lost but what I have left that counts!"
I'm going to send you my hair and let them style it too! Here's a photo from a Pink Ribbon fashion show I did with my 8 year old granddaughter in 2012. (It started out in the courtyard of a hotel but it rained so everyone was jammed into the lobby.) Lainey begged me to please let her take my hair off so, of course....this....
The hospital's photographer caught us all...my hubby in the red ball cap and Bama sweatshirt, son-in-law in front of him with glasses on his head and my sweet daughter, the brunette with the white collar next to him (both sitting). That's my girl, Lainey, taking off her coat. (She refused to carry the embarrassing dog purse they gave her big girl self.) The picture was on the wall at hospital headquarters and they gave it to me when I retired.
Grannax, I post this to show that you can just let it all hang out and have fun, my friend! I have the world's wrinkliest head!
Love from PatG
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I forgot to ask the question I came on to ask. My brain is a sieve this cycle. Has anyone else who is on Letrozole with Ibrance had a vaginal discharge from time to time? For the last two months, on a day here and there, I have....well, more like a light brown stain than anything and it's a very slight amount. Then I'll go weeks without it but then it's back for a few more days before it takes a holiday again. I called my oncology nurse and she asked my oncologist who said it wouldn't be caused by Letrozole but i did some research and it showed that, yes, it can happen. I figure it would be due to the mucous membranes being so dried out and delicate but I'm going to have it investigated anyway. The last thing I want is another cancer in that neck of the woods! I have enough to deal with as it is. It definitely disappears for days or weeks on end before it makes an appearance again and there has been no bright red actual bleeding.
Apart from that, I'm feeling quite pleased about life. I've been getting slapped down every time I get up for the past year but I've kept on getting up again and I refuse to give in. In July I felt I had to make the move I've been thinking about making and I did it. I've now been living in this apartment for 3 months and it feels like home. My husband just couldn't bring himself to tell his girl friend/protegee/PA/co-dependent ...I'm not sure what to call her. I guess she's all of those things. Note the space between girl and friend. This is not a physical affair but two narcissists getting off on their delusions. My husband, who used to be fun loving and my best friend wants his cake as well as me and I came to the end of the line. I've always been of the belief that if you threaten you have to carry the threat out, so I did. I couldn't continue to live at home with her coming and going as she pleased and as long as I lived at home, my 29 year old son had to as well. He was more than ready to leave but I need his help. He has his own studio apartment 5 minutes away from where I am now and this lifestyle suits us. As long as he was at home, his father thought he was there to wait on him as well as to care for me and was piling more and more work and stress onto him. So by my leaving it meant my son could too. It's been very stressful as my husband lies and lies to us and we've discovered he's been supporting this 33 year old woman (he's now 73) financially since she was 21 and came to live in my part of Australia. He helped her to gain a Master's degree in Finance and Banking but she's refused to look for a job so he has allowed her to "work" for him (he's a doctor) even though she only turns up for work when she feels like it, usually at about 11am and because she's unreliable he's had to employ two more staff members to cover for her when she doesn't feel like working. I'm sure I talked about this on here last year when I left home to stay in my son's apartment for 3 months. I went home again because he promised things would change. They didn't and instead got worse so when he hadn't made good on his promises by July I knew I had to leave. He's a narcissist and he gas lights me and our son constantly but we've learnt how to deal with that now. I could go on and on but I don't want to and, although there's a lot more, you'll know what I'm battling. He's lost all his friends except 2 who are humouring him because he's making a fool of himself but mainly because he's not looking after me! Our son does an admirable job of that.
So.....because of all the stress of this, I've turned my life around and I now live life the way I've wanted to for a long long time. I have one more plan or maybe it's a wish....I'm looking for an apartment in my son's building so that, if I become worse (and I'm not planning to do that) I'll be just a floor or two away from him. What I love about my life now is I'm no longer being brainwashed by my husband. He has a way of drip dripping thoughts into your head until you give in to him and let him have his way. For 40 years I did his bidding and when my tumour marker started a steady but very slow climb a few months ago I decided it's now or never! For the years I have left I'm going to live my life on my terms. I've filled the apartment with artificial plants and I have a Buddha statue and I've turned back into me again! I have a Facebook group that I created and which my friends contribute to. It's a positive, optimistic happy, friendship page focussing on gratitude and I've filled it with my friends who love it. I don't spend a lot of time on Facebook because my friends do most of the work but I check that the spirit of the page remains clear and bright. I also use it to educate friends about MBC because it's amazing how many don't have the slightest clue about Stage 4 cancer. If any of you would like to join (that thought just occurred to me) you can PM me. I use it to socialise because my mobility is very restricted.
Sorry to rabbit on about my situation because it really has nothing to do with cancer except in one way. It will sound very strange but I look on my cancer as having set me free. Free of being conscientious and keeping housework done and free of the need to see this child/woman he has taken under his wing and made her his princess and free of seeing my son being second priority in his mind.
Thanks to you wonderful women who all support each other. I used to do a lot of that but have been quiet lately as I dealt with my situation.....which still has a long way to go.........
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This has been my inspiration.
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Pat you are a supermodel!!! What an awesome picture of pride and joy with your family supporting you. That’s just how I imagined you might look. Just beautiful!
I can’t wait to see the Grannax version of that shot!
I also did a BC fashion show after my original dx. I have no idea where those photos might be!
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Leapfrog, It sounds like you have raised a terrific son in spite of the obstacles put in your way. I believe there is a price to pay for men who treat women the way your husband has treated you. I have seen it happen and, I must say, rather enjoyed seeing them suffer.
I'm glad you have your nest filled with your plants and I do hope you get to move closer to your son. I pray that your life gets filled with more and more joy everyday and forgive me if I hope for some genuine misery for your husband. I can't help myself!
Love from PatG
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Come on, Lauren, find those pictures and show us what you got!!
And thank you, my friend.
PatG
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Leapfrog, I’m so glad you’ve found a situation that works for you and that sounds much more pleasant! I dealt with a similar dynamic to the one you describe between my mother and father. In my experience, after the turbulence that naturally follows uprooting your way of life, it ended up being a much happier situation. I think we have to surround ourselves with people who genuinely love and support us.0
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Here is a picture of me and my dear friend, Carol. There is an annual fashion show of breast cancer survivors accompanied by the person who helped them the most during their treatment. It is a fun event and most importantly, all the money raised goes to cancer research. WE modeled about a year after my initial treatment ended (2014)which is why I have hair We had a blast dancing down the runway. Kitty
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Oh, Grannax....you'll be fabulous! I'm thrilled that your DIL is going to do this with you! I agree with whoever said it, revel in this experience and have fun with it. No one's there to judge; they're there to celebrate your success and strengths, and which there are so very many.
Let's see on the descriptor words.....wise, fun and funny, uninhibited (remember rolling around on the beach? You can do this....), strong, empathetic, kind....there'll be no problem with adjectives.
Kitty, your photo is terrific, and I love the pink streak!
Pat, LOVE THE PICTURE and your precious family! What a keeper!
Lauren, great work on the cutting and pasting-
Hang in there, Leapfrog.
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Grannax -- YAY!!!!!!!!!!! That is amazing! I struggled with crippling performance anxiety as a singer for many years.... until I discovered Beta Blockers! I swear, total miracle.... Consider asking your doctor for a prescription for Inderal (propranolol) for performance anxiety.
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Leapfrog: I am also having minimal brown stain every few weeks. It is almost invisible, but it smells at bit like the last day of ones period (sorry for being explicit). I personally thought that it could be the remains of my female cycle, since I am only 41 and used to be premenopausal before everything was suppressed by Trenantone and Letrozole.
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Blueshine and LovefromPhilly: thanks for your feedback on the Melatonine. My MO seems to be not sure about what to recommend, but he made me nervous. It is good to hear that other MOs do not see a risk, because Melatonin seems to work very well for me. I love the short halftime, because I can still take it, when midnight passes and I still have not been able to sleep. Zolpidem gave my a hangover even if I took it at 10.30 p.m. plus I am afraid of becoming addicted to it.
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smiles... you all make me smile and are an inspiration to me.... and all your words feel like a warm hug this dreary morning
I am on a mission to start my own mbc support group since I cannot find anything at all here in Wyoming....and since I love to write am thinking of some kind of writers workshop, maybe meeting at the local coffee shop and taking time to share ....
Would that be too weird? limiting? I thought I would just ask permission to put information in the waiting room with my number? Any thoughts or suggestions would be appreciated!
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Thanks for sharing your photos. Pat kitty
Grannax your warrior spirit will shine through. Very exciting.
Leapfrog you’re very brave to forge this path. I’m proud of your son and your decision. What a powerful message your moving sent to the narcissist.
Tanya
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Leapfrog, LOVE the banner and your courage. Yes, take care of yourself and bloom in your new surroundings. Love on your son too while you are at it!
Kitty, LOVE the pink streak.
Pat, LOVE the joy on your face. It represents the joy you are to others.
Grannax, LOVE the opportunity you have for a very special event to share with friends and family. Take hold of these special moments and be proud of what you have overcome and accomplished.
You are all my inspiration and encouragement.
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Leapfrog and NettaGER;
I had a swipe of blood once (couldn't have been more than a drop) and went to my doctor. I was way into menopause and knew I shouldn't be showing anything. Given my history my doctor (not an oncologist) immediately did a swab and sent me for a vaginal ultrasound. Long story short this saved my life as it was then my ovarian cancer was found although large stage 1c.. It had nothing to do with the one swipe as that was caused by the impact on my uterus from years on arimidex.....and I assume other similar drugs could have the same effect. I can't recall what the diagnosis of my uterus was and can't find the notes on it....my memory is a horrible thing these days. Just an FYI.
Love the photo of you and your family Pat. I ordered a wig from Paula Young (I had saved your post lol) last week and am looking forward to trying it out.
Grannax; I am certainly looking forward to the pictures. Have fun and I totally understand your nerves! Having someone there to walk with you will be amazing to assist with them and TwinkleCat's advice is in your back pocket if you need it
Time for a Cure; Love the picture and the pink bits in your hair....lol.
Leapfrog; I am so happy you are finding peace and happiness in your new place and in dealing with your very difficult, selfish husband. I love to know that you can express all of your frustration and fear here and get the support and love of all of our members. Everyones individual journey has such value here. It frees us all. God bless.
Cathy
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Thank you, ladies. I still need all the encouragement I can get. Love all your pics. Fortunately, I do still have hair, white hair. It's long and I wear it in a ponytail. It will be fun to see what the hairdresser will do with it. Up or down with loose curls? It's thinned a lot on Ibrance but it's still enough to do something with.
I'm so excited that my family will be there. But, on my first walk I either have to walk with one of their male models or alone, the second walk will be with my son. I've decided to pretend I just won Miss America, from the sixties. I'll just wave at my family and smile a lot. Also, I will be thinking I sure am glad I'm not doing this walk in a swimsuit. Ha
Lauren H Thank you so much for your magic powers to put my info on here. One more favor, could you put the one paragraph story on here?
Joyner I wish I would have thought of those words. Ha Especially uninhabited! Lol
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Frenchhorn6: Don't know where you are in Wyoming, but we here in Helena, Montana, are working on starting a non-profit group as part of a chapter in Bozeman. It is called cancersupportmontana.org and is part of a nation wide group. The group in Bozeman has a pretty extensive website that you might want to look at. We already have a cancer support group in Helena which is pretty loose. We meet twice a month to share our stories, fears and successes. We have about 80 ladies in the group and about 12 to 14 show up regularly for the meeting. I think the group was originally initiated by the hospital. We have one hospital here (other than the VA) and one cancer treatment center which treats all the cancer patients in Helena and surrounding areas. They have been known to guide patients to our group but not on a regular basis and basically are not very supportive. Best wishes on getting a group together.
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