Ibrance (Palbociclib)
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Thanks so much, Husband!
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My wife will probably try NAC, but is about to start on bovine lactoferrin, and I don't want to complicate interpreting any changes or side effects, and which supplement to attribute the good or bad to. Her monthly blood tests, including tumor markers, liver enzymes, etc, may give some immediate insight into whether the bovine lactoferrin is having a positive impact. It has gotten good results in the test tube and in mice with human breast cancer cells implanted. It also has some human trials with metastatic colon cancer patients. I think its a supplement worth trying. I like to evaluate complementary therapies based on 1) doing no harm 2) reasonable evidence of effectiveness and 3) reasonable cost. The higher the #2, the higher #3 can be.
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Hello ladies, and husband (LOL) - I have a petite question about bloodwork. I know Ibrance is known to futz with the neutrophiles and do a number on the bloodwork. So I'm curious about RDW - I looked it up, means Red blood cell Distribution Width -- has anyone had this go high on Ibrance ? (today I'm at 22%, where normal is 11% - 16%). I'm sure the nurse will tell me its NOTHING tomorrow, (nothing is ever anything) but you know me, just old curious and curiouser ...
Thankful for all the good news you ladies have shared. Keep it up !
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Leapfrog, I have a story that verifies your theory. When I was living in Albuquerque, one of the neurologists there was running a clinical trial on one of the first MS injectable (they all were at the time) drugs. Since I have MS, I knew quite a few other people with it from support groups. All of that doctor's patients that I knew ended up on that drug. When I moved to Las Cruces, I knew someone who went to Albuquerque to see that doctor. (He is the only MS specialist in the state.) He wanted to put her on that drug. I had told her to watch out for that. He didn't even mention any other drugs, of which there are several. It seems to be to their benefit somehow. I hope I am not being obtuse, not seeing how that would work exactly. Anyway, your theory seems to be correct.
Happy Thanksgiving everyone from sunny New Mexico. It will be about 75 today. Gorgeous.
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Amarantha, I don't have the answer to your question, but my RDW is on the high side, too, at 16.1. My MCV (104.9) and MCH (34.9) are also always high and continue to climb. No one has expressed the remotest concern (except me). I don't understand the implication of those numbers, though I've looked it up.
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Hi Joy & Hope (Hope & Joy)!
I agree with Husband, NAC is a widely-available compound, sometimes used as a decogestant for kids, and its encouraging that they saw effects in breast cancer specifically, so I was thinking of trying it too...
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Joyner, thank you for your answer ! Yes, isn't that funny, no one expresses the remotest interest, hahaha. Oh well, I guess that's good
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SweetSide....I have to take two weeks' break every cycle and I've been on Ibrance for ten months. Two months ago my oncologist dropped my dose to 100mgm. I still needed two weeks' break this cycle but I've been told it could take several months for my neutrophils to be above 1. It was only .58 after one week's break and usually, after the second week, it's only just above 1 - usually about 1.2 if I'm lucky. As you say there's still room to manoeuvre. There's the 75mgm dose so I'm hopeful that eventually I'll only need one week off.
Nonahope....I think that's what I was trying to say in my very long winded way about Ibrance!!
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Leapfrog...Forgot to wish you a HAPPY BIRTHDAY!! I hope you had a fantastic day!
Hope
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Pat, praying for positive results Monday.
Leapfrog, seems fitting that you're celebrating your birthday in a new apartment - cheers!
SweetSide, congrats on cycle 2 and that you're experiencing minimal SE's.
I think I got good news from my scan, but need your help. My MO is out of town so I spoke with the on-call MO. He said everything is unchanged from last scan. So stable is good, right? Except that my last scan (2 months ago) showed inflammation in my ribs and a small area in my liver that looked different from previous scan. When I pressed, the MO asked how I felt. I'm actually feeling great, better than my last scan. He said if I'm feeling good and there's no change in scans, he'd keep me on this protocol. I have an appointment with my regular MO in a couple of weeks and will review with her then. Should I just take this as plain good news or good news with an asterisk?
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Jaylea, I think that news has giant exclamation points on it! Remember that each report of Progression Free Survival was considered a success on the trials. You've had no progression and you have survived so it's time for all of us to do a little dance! And if you're feeling better, that's a bonus. Congratulations!!!
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I saw a holistic onc a few years ago and he prescibed NAC 600mg twice a day. They also use it to protect the kidneys when you have a scan with contrast. It helps the brain to make glutathione. I got it from swanson and it was cheap, $6 a bottle I think.
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Amarantha, it's entirely possible for treatment to work quickly. When I started ibrance I felt really bad for about 10 days, like so stiff I could hardly get up in the morning, and tired and feeling crappy in general. After that first few days I suddenly felt better than ever, better than before ibrance. I knew it was working. When I get more energy I can tell somethings working because active cancer makes me tired and I just want to slep and sit around. I just started xeloda and the same thing happened. First cycle I was really tired and slept a lot. Second was not near as bad. I found out Monday that after the first cycle my marker went from 5000 to 1900. In three weeks!
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Wow, so much to get through tonight. Firstly, Cure-ious thanks for all that information on NAC. It sounds very promising. I'm on a trial so I can't experiment with anything but it's good to have information up your sleeve in case it's needed one day.
Amarantha my RDW is high as well. Without getting out my file I can't tell you the exact figure but my oncologist doesn't mention it as being significant and I trust him.
Jaylea.... a stable scan result is GREAT! No progression is what we want. Obviously regression would be even better but as long as you're stable I think you deserve a few ******* s. PatG is right because I'm on a trial and my MO was happy with my last scan because it was stable.
Jaycee49 ....thanks for your story. I'm sure there's a lot of it about. Some oncologists are just the same as other consultant specialists. They'd like to be the one with a breakthrough story or a good case history to speak on at a conference and if they come across a patient who's likely to make their success stats look good why wouldn't they hold onto them? I'm just so grateful I got out of that situation.
Without scrolling back a page and losing what I've typed, to the girls who are new to Ibrance, I'm glad some of you are finding its SEs are manageable. Thinking back, I definitely felt a lot better after I started on it. I'd forgotten that because at that time I was in a haze of pain drugs from the bone mets and I have a big memory blank from around last Christmas to February.but I can trace it back now that that's the time I started picking up. I just work through the fatigue now. I do have quite bad mouth problems but gelclair is great for those and Ondansetron fixes any nausea if I have it, which is usually only because I've eaten something too rich. I do hiccup a bit just after meals but those SEs are hardly worth the effort of typing about!
My niece came to see me in my new place today and, because she watched me getting sicker and sicker over the five or six years before I was finally diagnosed and has watched me improve this year, it was good to have her objective opinion that I look healthier than I have for three years.
My husband is in an adjustment phase, which will probably take quite a while. He thinks I'm going back eventually and I'd rather let it dawn on him gradually than batter him over the head with the information that I won't. Apart from not being able to accept the double life he led and the lies he told, the house is just too big. I'll never be able to look after it again and, living there, I can't even look after myself. My son deserves to be given his life back and if I went back to the house, it would all fall onto his shoulders again and I'm just not going to do that to him.
Thanks for the birthday wishes.
I hope I haven't forgotten anyone. Love to all
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Leapfrog...I can certainly understand you not wanting to burden your son....a very unselfish decision for you and I applaud it immensely.
Hope
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Well, ladies, Leapfrog, HLB thank you so much for your feedback regarding the RDW. I'll let that concern slip away.
It is VERY encouraging to hear about good results with Ibrance, I certainly did not feel this while on Afinitor, and the side effects were rather debilitating and ugly-fying - constantly swollen face, eyes, nose, cheeks, lots of acne. I noticed now on Ibrance my face is all un-swollen, I almost have eye-lids again, and I feel so much prettier, but bizarrely, I have become very PALE. That makes my hair look darker, and I'm all for it. I guess its from the change in blood counts. Anyone else notice a change in their face ?
The other things I want to ask you all about, is that now I am near the end of my first week off, and about to begin the second cycle; I feel like the Ibrance began to have an effect on my cancerous rash on chest, but now that I am off it for a week, I feel it is raging forward again, which makes me scared. I can't wait to begin the second cycle, because I fear every day off it is a chance for the cancer to flame. Any one else feel this way ?
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Nancy, I am sending prayers that your situation with your mom and her house is resolved quickly. I agree that it is time to get some help for you in caring for your mom. It sounds like her doctor should suggest to her some facility care--I know it helped me when I had to place my parents in assisted living to have their doctor weigh in and talk to them. I haven't let up on my prayers for your cyst. I know you trust God to care for your needs and I pray for some peace and rest for you.
I have resisted supplements so far but I am very curious about the NAC and have ordered me a bottle to start. It sounds promising and safe. Have a blessed weekend.
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Amarantha, you look lovely! I pray that your next Ibrance cycle will get ahead of the MBC rash. Let's expect great things!
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Amarantha, what a lovely picture. I can't say I'm paler, but I'm pretty pale to begin with. I do notice way darker circles under my eyes, I'm talking scary. But I'm sleeping good, so I just swipe concealer on them and go about the day.
My first two cycles were similar to what you're describing. Week 3 and 4 I experienced intense met pain in sternum and chest. I was convinced it was progression. Then on weeks 1 and 2 pain would subside, and now that I'm starting cycle 5, no more pain at any time. So now I think that the pain, at the height of the Ibrance strength, was the mets resolving.
I bet as you continue the Ibrance you won't notice the difference on your off-week. Wishing you continued success with your course of treatment.
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Amarantha- I meant to answer your question about RDW - then got distracted by Thanksgiving.
RDW- gives information about the variation in sizes of your red blood cells. If there is a large range of cell sizes then you can have an increased RDW. There is no condition that regularly causes a too low RDW. The test gives non specific information in the investigation of anemia. It is often high with anemias caused by vitamin or mineral deficiencies or after a blood transfusion, there are other conditions as well. Mine did go up for several months after my blood transfusion, but, now has normalized and I have taken 5 cycles of palbo. I was severely anemic when I started it (hence blood transfusion) but, it is slowly improving.
About 30% if people get anemia from palbo according to Pfizer- this could account for the elevated RDW.
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I have also read that NAC is recommended for lung issues and respiratory illness. I was diagnosed by a walk in clinic this morning with " the possibility" of pneumonia. The PA said an x-ray would be academic and not really needed. he said he was going to treat it like pneumonia. Strange though he said my lungs were clear. I am coughing up a lot of yellow mucus and feel crappy. I am going to follow up with pcp on Monday but thinking of starting some NAC. Has anyone used this for respiratory illness? Has anyone had pneumonia while on Ibrance?
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Amarantha what a gorgeous photo. You really look lovely. I can't tell you much about being pale on Ibrance either because I'm always pale. I have fair skin but am also pale if you can follow that. Apparently I go pale every so often because people ask me am I ok and it's usually when I have a sudden "not well" feeling. I put that down to the cancer or slight anaemia more than to Ibrance. My haemoglobin is always a bit too much on the low side and my MO always notes it down.
Jaylea I also have those dark circles around the eyes, have had them for about five or six years and that's when I've worked out that the cancer must have started. I love concealer, it's my friend.
I'm glad you've both brought up the topic of sternum pain because I've been on Ibrance since the end of January and have had sternum pain that whole time. It seems to be improving now though. I was concerned enough to ask my MO to check me at the visit before last and, because I also had increasing spine pain, he sent me for a CT but everything was ok. I think we shouldn't worry too much because the Letrozole/Ibrance combination (or similar and Ibrance) is slow working and we have to be patient. Interestingly, when I first went onto Ibrance my TMs plunged every cycle and I mean plunged. It would drop by 100 to 150 each cycle and I was thinking I'll have this whole thing licked by October. That was in May. It had dropped from 900 to 390. Then suddenly at the end of May it shot up to 520. Since then it's hovered between 450 and 510. I think they call it flatlining. So, just a warning that this can happen. I'll be interested but not terribly anxious to know what it is on Wednesday. Well, maybe a teeny bit anxious if it goes up a lot because it had dropped by 60 last cycle. My MO always says not to place too much significance on the TM unless it goes up and keeps going up.
Singlemom...I've been lucky touch wood and haven't had any infections with Ibrance but I'm warned about it by my trial nurse every month and told to take my temperature every day. I actually don't unless I think I need to because I'm a bad patient but it would be possible for an infection to have turned bacterial I would imagine. I wear a mask when I go to the Cancer Centre to try to avoid picking up a cough or cold. (just by the way).
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Leapfrog, so glad you're rebooting your life. Much like Ibrance, the transformation can be slow and painful, but good things are on the horizon.
Singlemom, yuk, pneumonia. I hope you feel better soon. I got a flu shot and pneumonia shot, and so far, so good. I'm careful around crowds which can be awkward. At church I've got everyone doing an 'elbow bump' greeting - usually followed by a good laugh!
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My holistic onc told me that NAC is called mucomist when they use it in the hospital for resp issues.
Amarantha, I've never had symptoms of progression, but I also wondered about the week off Ibrance and if it would be better to take it every day, because I never had any low counts to cause a delay or reduction.
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I'm having second thoughts on the N-AC. The research that showed it increased the rate of spread of melanoma and lung cancer tumors has me worried. The theory is that circulating cancer cells are under oxidative stress, and that anti oxidants like N-AC may help them survive. Does that also apply to breast cancer? The promising breast cancer work looked only at the initial tumor, showed that it was made less aggressive by the N-AC. But what if it works only against the in situ tumor, yet aids the metastatic potential of circulating tumor cells? I hate to be a wet blanket, but its got me worried that we don't know the end effect of supplementation with N-AC yet. I'm worried about the potential for some paradoxical effect where it suppresses the established tumor, but aid in metastasis.
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Husband, thanks for following up on this. Your concerns make sense to me. I think that I'll hold off unless and until we know more. Thank you for your perseverance and for sharing it!
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Husband11-that had me worried as well since studies have shown other antioxidants have caused lung cancer progression. A study also showed that antioxidants taken to try to prevent taxol induced neuropathy actually made it worse.
I may still ask my MO what she knows about it.
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Thank you Jaylea and leapfrog.
Thank you also Husband. I appreciate your research and for sharing it with us. I am going to hold off on it.
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Thanks, Husband, I will also drop the suggestion based on the strong antioxidant qualities, although I would love to hear if any MOs have any special insight
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Hi Ventura. I just took my first Ibrance pill and 1 hour later Famera. Very nervous and scared, because all my life I never took serious medication, of course before the Brest cancer. I hope it will work for me and you. I send you my hugs and God bless you.! We are all in his hands
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