Ibrance (Palbociclib)
Comments
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Hi Patmg
Delighted to see your marvelous creative talent
very cheeky ..or tongue in cheek as we use to say
Down under seal of approval
Many thanks
Bright in hope
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IntoLight and PatgMc- You both posted about shortness of breath with exertion. What causes that? Associated with Ibrance? MBC? I have not officially been diagnosed with asthma, but for several years when I get a cold, flu, etc I get a cough that won't go away and my PCP has mentioned could be a "form of asthma". But now I am having shortness of breath with climbing stairs or sometimes walking short distances--like to my sisters house the other day. My PCP said could be from lower counts with Ibrance use, but that my counts "were not all that bad" on last lab work. Hence we are doing pulmonary function test this week.
Has others here had new shortness of breath with exertion, stairs, etc? Like I said, I am not very anemic from the blood work results. And this feeling is new since this MBC issue and all the meds.
Hoping we all have a good week.
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Candy, I would bet the shortness of breath is from the Ibrance. I hadn't thought about it but I don't remember having it before the terrible pneumonia this past winter. I coughed so much then that I had blood clots in my port...so weird. Mine is not from low counts because those have remained at or barely below normal. I've never had asthma. I haven't discussed it with my doctor as I just don't want to have to go to another doctor for more testing. I hope yours goes away soon.
Love from PatG
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I just read a great thing on the Faslodex blog. I think we all know the importance of getting our shots after the Faslodex has been warmed - mainly to room temperature. A newbie on the blog just had her first injection - the nurse had warmed the needles by wrapping them in a warm blanket - the kind that's at most hospitals and clinics. I thought this was a useful idea and am going to pass it on to my clinic. I think they usually have the needles out at room temperature but that is not always the case as schedules can change. What do you think?
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Lynn, what's her name? Wishing you fair winds and following seas on your journey, and look forward to pics!
Chicagoan, sorry you've been sick and hope you feel better.
Candy, I've been having a heck of a time with lung issues and SOB. I'm propped up in bed with lower lungs aching like crazy, and I've lost my voice. (DH is hard of hearing so you can imagine our conversations.) Air quality in No. California is crappy from all the fires, so I'm attributing it to that. I wonder if Summer, pollen, heat, etc. contributes to issues?
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I have noticed that my shortness of breath is when I'm outside. I think you may have something jaylea about the air quality. Ac has been my best friend. I also feel that my heart burn contributes to it.
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Bon voyage Joyner.
What a wonderful adventure at any age
Tanya
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I am on my 3rd cycle of ibrance and flasodex. I have been VERY short of breath the past few weeks. I live in Florida so the humidity doesn’t help. I have a plural effusion but it has been draining the same amount it has in the past. I do better on flat surfaces. It takes nothing to run out of breath. I’m praying it gets better but I will take it if this treatment is working. I have had little luck with treatments fully working for me.
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I have some shortness of breath, too. Mostly when I'm taking the stairs. Not sure where it's coming from.
In other news, I had a CT scan this morning, and when they said, "Your doctor should have your results in 48 hours,"
I wanted to scream "48 HOURS?!!!!"But I just said thanks. Now I'm on pins and needles.
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It is humid here too. July, now August, heat and humidity. But the shortness of breath is also in A/C buildings. Like I just don't have the stamina I used to and cannot walk the pace and distance I once could. Pulmonary function test done and waiting on results.
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I have shortness of breath too, especially if I have walked up steps. My doctor doesn't seem to have any concern about that, and just makes a little note in his file. I expect it's a side effect of the ibrance.
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I also have shortness of breath with exertion and going upstairs. My MO and pulmonologist cannot find a logical explanation as I am not anemic and all tests are normal. So I just accept it and move slower.
I have a question: I am on Letrozole/ Ibrance 100 with prolia injection every 6 months. I also take Calcium and Vitamin D3 as recommended.
But I still have osteoporosis from latest bone density. What happens next? I see my MO next week. Just wanted to hear from others.
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I think this is a side effect; on my 2nd cycle now and like the 1st cycle, mid-way thru I get a sore in my nose, it is so painful . Onc didn’t feel it was a side effect, but with this happening again, seems like it might be. Ive not had any mouth sores so far. Anyone else have this problem?
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Yes, I just experienced the nose sore on this my 18th month on I/F. It was very painful. I treated it with neosporin and in a few days it was gone. I hope yours gets better soon.
Stllivin - Suz
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westie mom I get them, too. This, my nineteen cycle, had been the worst. I also had the worst sinus infection, too. My MO agrees now that sinus infection is SE of Ibrance. I haven't mentioned the nose sore to her yet. I'm going to try the Neosporin.
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Thank you all for the conversation about shortness of breath. For the scientific minds out there, what do you think? I just wonder what is going on in the body for the side effect to be shortness of breath. Especially if MO and pulmonologist ( in SandiBeach57's case ) cannot have explaination. I will keep you informed about pulmonary function test results when I get them. I don't have a pulmonologist, my PCP ordered the test. I love that we can bounce ideas off eachother. And that I can tell my PCP that other women with MBC and on Ibrance have this symptom if my test comes back normal.
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Candy, for what it's worth, just before my MBC was discovered, I was in the process of trying to sort out why I had an ongoing cough. It ultimately went away of its own accord, after a year of coughing, but during the process, the MBC was "stumbled upon". The MBC did not cause the coughing.
During the process, sometime in 2017, I also had an endoscopy in the search for the cause of the cough, and there was nothing found. My point in all of this is that the shortness of breath was unrelated to all of that. It seems to me that it is most likely the Ibrance (though I guess it could also be related to the Faslodex, since I'm on that, too, and have been since starting Ibrance). Just another piece of the puzzle.
Hugs to you...
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Ladies, here is my 2 cents on the cough - I was a smoker, moderate, for about 14 years, then quit 35 years ago. In reading through my chest exrays, scans etc., I noticed a couple of references to her (me) 'chronic small airway disease'...When I inquired I was told this was COPD, probably from the smoking. It does not cause me many issues, just a sporadic cough and should it get worse there are inhalers and such...NO one told me anything about this, so that's a thought?
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Makes sense. History of smoking. Now some COPD damage. Glad you quit.
I have never smoked.
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Candy..I had pulmonary function tests, VQ scan, chest xray and echo ..all specifically for SOB on exertion. All results normal. So I am just assuming medication and adjust my activities. I do have a pulse oximeter and BP machine. I also have low blood pressure since starting AI and Ibrance.
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I get tired walking up stairs or slopes, particularly on days 15 to 24 of the 28 day cycle. My blood pressure has also dropped since starting Ibrance, so I no longer take medication for that; one thing to be thankful for and another -I now sleep the best I have since the menopause. Long may we dance with Ibrance despite its inexplicable side effects.
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SandiBeach57-
Isn't it weird how these meds effect us. I bet my pulmonary function test comes back normal too. It is just another frustrating thing about our situation---I feel like I am soooo different than before. I used to walk at a brisk pace and when I was with someone they would comment how I walk fast. I never thought about it, it was just me. Now I have to slowly walk everywhere or pant and puff if I walk my old normal way. My blood pressure is not low, now borderline high. My PCP commented on that last time I was there. Cancer just keeps on giving.
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I also have SOB and lung mets. Recently my MO assured me that the SOB has nothing to do with either one! Seriously? She says it's all about not having a daily exercise program. It's funny I didn't have either one two years ago, I told her! Grrr We get no respect! I decided I'll let that one go, I do need daily exercise program. Haven't done it yet. I'll get my respect here💞
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I never had daily exercise either. But I did used to push mow my yard in the summers and now I don't. And now I have a desk job. Sooo I guess I am more sedentary than I used to be. But I don't think that is the only reason for the new shortness of breath. I guess a daily walk would not hurt....
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Candy-678, this is more of a response to your post a fews days ago than the more recent exchange -- or maybe a little of both now. (My post the other day seems to have disappeared.)
Anyway, my own upcoming "travel" is not mountain climbing, boating, or bike-riding but a week on the beach at the south Jersey Shore. :-) I will likely read and nap a lot on the beach while my DH plays plays Frisbee and swims with our son. I walk pretty slowly. I still work part-time but need to pace myself. I need a solid 9-10 hours of sleep these days to function decently. My DH (who always split the housework with me) now gets up at 5:30 a.m. to do the chores and see our kids off to camp/school before he leaves for work. I've had a variety of relatively and sometimes bizarre side-effects besides the fatigue that have come and gone. I haven't noticed SOB in particular though with the humidty and fatigue it all kind of blends together. But no "oooomph" for sure!
Before they started me on Ibrance 20 months ago (first with anastrolzoe and then swicthed letrozole) I was in terrible shape. Horrendous pain, i coudn't walk at all, hold down food or liquids, etc. From the way they were initially talking, we assumed i didn't have much time left at all left in this world. I jumped for joy when my MO first used the word "stable" a few month later after I started the meds -- she told me that was amazing and the goal in my case.
Obviously, I felt joyously blessed when the months went by and she started using words like healing .. and then healed. And then this May, "Your scans cound't look better." (Someone else may have asked about this -- for the record, I've never seen the words NED or NEAD anywhere in writing -- I only figured out that's where I was when I overheard my MO tell a nurse in May that I had "no active disease.")
Like you, I just keep where I've been and where I am now it in perspective and know many others in this world have it worse. I'm so glad for what I do have, and what I CAN do.
We don't know what lies ahead in this journey for any of us, but the pace of the progress in the research is amazing and thrills me with hope.
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Penny-78
I hope I didn't sound ungrateful in my posts. I thank God for what he has allowed me to have. I can still work, go to church, and just enjoy being at home reading a book with my cat on my lap. Yesterday I splurged and bought a GREAT donut at our local bakery just because. I didn't really need it as I am gaining weight easily on the A/I meds.
I know there are others much worse off than me. I posted this in a thread the other day- I don't remember which thread- There is a lady that works in my company that was just diagnosed with glioblastoma. She is in her early 30's, married with 2 young children. We all know that with that diagnosis there is a prognosis of around 1 year. So sad.
Congratulations on your NEAD status! And I hope you get a long run on the Ibrance Dance.
Enjoy your time on the beach and with your family.
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Candy, oh not ungrateful at all! I saw your post the other day about what you CAN do and you reminded me of me. And I saw what you wrote about your colleague with glioblastoma. Its sounds like you have a terrific attitude! But now you've made me hungry. ;-)
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Penny-78 That donut was wonderful. Amish bakery. Homemade. And as large as your head!!!!
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Hi all! I am still in the Springs so I haven't responded much, but I read when I can. We leave tomorrow for home with stops along the way expecting to be in San Diego on Monday. I am hoping the altitude issues will be resolved by then as I need to get my labs done the next day. Anyone know how it will affect them? I need to start my next cycle Tuesday.
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I always find my answers in this little worldwide circle.
In today's posts I've learned:
A. What caused the fatigue and shortness of breath > the "OOMPHerectomy" we all had the day we started swallowing these brown capsules.
B. The cure > swallowing an Amish donut the size of your head.
Love to all of you pioneers and overcomers!
PatG
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