Ibrance (Palbociclib)
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welcome VonHilda sorry you need to be here but it is a great support network and source of information. I'm also British but living in Germany so Ibrance is easily available on prescription here. Hopefully the NHS/NICE will approve it soon. I have been on ibrance and letrozole for 17 days, so far side effects are some diarrhoea and nausea in the morning's. Oh and hot flashes are back again!
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Praying for Dianarose, and her doctors - that they be guided to find relief for her pain, at the very least.
I'm a relative newbie (diagnosed April, started Ibrance Aug 1) but feel like I've known so many of you for a long time... I guess it's true -- the enemy of my enemy (cancer) is my friend!
I find myself falling into the trap of "Is this a side effect?" for every ache and pain. Last night I had sciatica, and asked my husband if that was from the Ibrance (he's a pharmacist). He started laughing and said, "You've had sciatica for fifteen years, so I doubt it. Is it worse than usual?" and I had to laugh because actually, it wasn't even as bad as an average attack. Then this morning, when I got up, my knees ached, and I remembered joint pain was a side effect. Again, husband reminded me I've had that for years (overweight, inactive, and age 55!). So far the only real difference is that my 4am sweats are back, and my naps on the couch start earlier in the evening!
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Welcome, VonHilda, and good luck! You may find this regimen to be very tolerable once you have gotten a month under your belt and gotten the "lay of the land".
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Micmel -- Thanks for letting us know about dianarose! I read here often but don't post much. I will be keeping you both and her doctors in my thoughts and prayers.
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Micmel - sending kind thoughts to you and your dear Dianarose. None of us deserves this awful f*** disease. I felt the same way when I lost sweet Naturegirl; just tears and helpless and so sad. I never got to hold her hand or bring her a meal, because she lived in New Orleans - but she made me smile and laugh even when she was calling the paramedics.
Too many ladies have Ibrance fail them, hoping she can turn this around. Meanwhile, please stay strong.(()) Claire lighting a candle for Dianarose
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Micmel Praying for you and DianaRose.
As all of you know, I have responded to 7 months of IF. My recent PET says partial response (less metabolic activity) to pleural/peripheral lung, right hilarious lymph nodal, and right mediastinal lymph nodal lesions. There was more detailed discussion the multiple lesions in lung and chest. I'm still having some SOB so I guess pleural effusion is causing this.
The SE that is the worst for me is that I'm tired of being tired. I wish I could predict when it hits the hardest. But, like most of you, it catches me off-guard. I am willing and able to put up with the fatigue and SOB as long as TX is working. The " if it ain't broke don't fix it" theory that my husband used to tell me. I'm older and retired, so I can deal with this. But, if it starts messing with my time with my grandchildren, I will start asking for other options. Maybe my onc would reduce my dosage to 100. I've done 125 all this time without it affecting my blood work too much, I don't have nausea or other SE. It seems that 100 is just as effective as 125, as I've read here but I've never asked my MO what she thinks. I'm so happy that I'm responding that it's kinda scary to think about reducing the dose.
I am going to start an exercise program, possibly next week. I got my free boobs and bras ( including and exercise bra and boob) last week, so I'm all ready to start. It's a free 4 month program offered to cancer patients in treatment. I wonder, are you all aware that Medicare pays for 12 bras per year? I don't know who needs 12 bras a year but I'm going to get maybe 6 this year. Also, it pays for a prosthesis every 2 years. And a swim and exercise prosthesis. I'm ready I just have to make that phone call. I'm hoping that exercise will help with fatigue.
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Hi Grannax,
Good for you about starting to exercise again. I think it is key to minimizing the fatigue. I've exercised daily since starting Ibrance last fall-at first I only did restorative yoga and short walks. I had to stop every few blocks to sit down b/c my heart rate would get too high or my oxygen too low. But now after 9 months on Ibrance I am hiking, kayaking, swimming. I'm the slowest one in the pool but I don't care-I'm still swimming and it feels great. I found when I was on vacation a month ago-it involved strenuous hiking and canoeing- that my fatigue was actually reduced when I exercised vigorously every day. Much to my surprise I didn't need any naps and I drove home 10 hours straight without having to stop to sleep. Now I am pushing myself a bit and it has helped me to be less tired. I'm down to sleeping 8 hours instead of 10.
Thanks for letting us know about the bras. I try not to wear one unless absolutely necessary or if I feel like looking "normal."
Dianarose and Micmel-you both remain in my thoughts and prayers. God's peace to all of us today.
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Welcome Bens_mama and Leapfrog to this forum of caring people. We support you as you seek answers and care.
Well, it took only four days of a new preschool for my granddaughter to bring home a virus and give it to me. Arghh! I so wanted to feel decent this weekend as my newly remodeled kitchen is finished enough that I can move the dishes and stuff back in. But all I can do is lie here and feel miserable. I was so pumped with good dx this week only to be slammed today. Such is our new life with bc!
Continued prayers to Dianarose and all of our sweet ladies who are struggling mightily this weekend. May God provide comfort.
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Joyner,
Please let me know if you received an email from me this afternoon.
Thanks,
Pat
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Intolight, I'm so sorry you caught a virus...talk about unfair! When you feel better, you must post photos of your newly remodeled kitchen. I can't imagine moving all the stuff out of mine and having to move it back. What a woman you are!
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Got it, Pat(1), as you know by now!
This article about CAR (T) cells is enormously encouraging. Take a look.
http://time.com/4895010/cancers-newest-miracle-cure/
Micmel, any update on Dianarose? Praying for her and for her family.
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Good Morning Ladies~ i spoke to Dianarose's husband yesterday after noon and he said she was still in the hospital and needed a third blood transmission this week and she is very tried and weak. She has been sleeping a lot and is still in an all out battle. Thank you for caring. I will keep you all posted as soon as I speak to one of them again today. When I spoke with her last she was very scared and worried that they wouldn't be able to help her. I have been praying non stop and am filled with worry, I know I am not eating. I am praying she will begin to improve with this last blood transfusion ! Hugs to all. We have a great circle of love around here! 💕 To all. And to my precious friend 💜 I love you sweetheart!0
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thanks for the update Micmel, hoping the third transfusion works for Dianarose, I am keeping her in my thoughts and sending much love to you both xxx
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Thank you for the update. I have been messaging with Dianarose for awhile now. She lives in Maine and do so I. Twice now we were suppose to meet as we both go to the same cancer center. We were gojng to meet yesterday but tgphen she got admitted to the hospital. I thought of her all day yesterday and she was the first thing on my mind this morning.
I have lurked here for awhile. I have the same type of cancer that Diana has. ILC to stomach and bone. Between that and us living in the same state and going to the same cancer center we just seemed to click. Like I have known her for ever.
I will continue to look for your updates Micmel... I am praying these blood tranfussions help her.
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crog~ she has that effect on people because she is a precious soul. I am happy she has so many people that care for her. She is a Diamond in the rough for sure. I wanted to sit with her and hold her hand as well. We were planning to meet as well. I do not live in Maine, but she has traveled down to PA once in a while and we had hoped to do that on their next visit. I am praying that will still happen. She's a wonderful person, it seems everyone here is special. I am thankful she has such love here. It's very important for support! God bless you too my dear. I'm glad Diana has such a good circle of friends. But then I'm not surprised. She's a keeper! Hugs to all ~M~
Blume ~ ty vm. I will be keeping you all in my prayers. Such a good group. Thank you
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I am praying we will both get to meet her. Hoping also that the blood transfusion will give herstrength to continue her chemo.
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Healing thoughts and prayers for Dianarose
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I just heard from her 😊😘 she said the transfusion helped and she has already informed the staff that she's leaving today no matter what they say. So I'd say the feisty Diana is enforce!!!! I am going to hear from her later, I told her there is a large circle of prayers coming her way. She is one tough lady! Gotta love that ! Hugs everyone ~M~
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Hello! I guess I'm the poster child for the phrase MIA! I'll try to update you.
The wedding was beautiful. I spent the morning of the wedding at the hospital getting fluids. But, I made it through the wedding. Since then, I have been having almost daily IV of fluids. My creatinine level is too high. Had a kidney ultrasound which was ok. So, my mornings are spent for hours at the oncology office getting fluids, hoping to raise the level.....otherwise, I may have to be admitted for other kidney functioning tests. It's been hell. I feel like I'm on vacation, not getting fluids yesterday and today but I have to drink water all day long. I'm scheduled to have daily IV fluids beginning tomorrow until I see a nephrologist. My oncologist is working on that. He's doing his best to keep me out of the hospital with my immune system being so compromised. So, my days are spent resting, sleeping etc. when I'm not being hooked to an IV. Exciting, huh? I'm so far behind with posts, so I need to catch up with everyone. I am feeling much better, so hope to check in daily.
Hope
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Hello All,
This has been a difficult week for many of us so I thought I'd send out some photos. There is a sunflower conservancy about 2 hours away that has acres and acres ( about 500,000 ) of sunflowers, with walking paths through the middle of the fields. It is amazing to walk through and be surrounded by the tall blooms. I can't go this year but here are some pics of past years. Enjoy.
Indigo Bunting on the sunflower
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So glad to hear this!!!! ☺
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GORGEOUS, Lindalou!
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Joynert I watched a program called "First in Human" on the discovery channel. It was about CAR T cell immunotherapy. It took place at NIH and focused on a leukemia patient and melanoma patient. I think it's an ongoing series. It was so interesting and so similar to the article you posted. There was no mention of trying it on MBC patients. I have a friend who will have the melanoma therapy at the end of this month at MDAnderson. They surgically removed two of the tumors in her liver and it takes 3 weeks for them to remove the cells and grow the ones they want to inject back into her. I think they are called something different when it's from melanoma. I hope it works for her.
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Micmel that is such fantastic news, so happy the transfusion has made her feel so much better
Continued love and positive thoughts and prayers for you both and everyone else hereLindalou, beautiful happy photos thanks for sharing
Nonahope pleased you enjoyed the wedding and are feeling better
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Grannax, thanks for the update on that series. It's all very encouraging. I figure that advances in one area of cancer treatment is encouraging on all, as they're circling in on the right ultimate answers. I'll look for the show.
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Just got home. Very weak though.
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Hang in there, Dianarose! Go take a rest and gather your resources! Glad you're safely home again.
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Dianarose, Clapping hands and breathing one sigh of relief to see your name here my friend. 💕~M~
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so glad you are home Dianarose, rest and feel well soon x
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So happy to hear that Dianarose is home!
For those interested in the First in Human TV program here is some info on the next airings - it is a 3 part series on the Discovery channel. If you want to catch the first episode that has already aired it is available on the web, just search for First in Human, Discovery Channel.
The hour-long first episode of 'First in Human' was aired on Thursday, August 10, 2017. There are two subsequent episodes that will air on the following Thursdays, August 17 and 24, at 21:00. (9pm) This show will appeal to those who are interested in health, medicine, science, and care. It provides a realistic representation of the work that takes place in the center that will inform and enlighten the viewers.
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