Ibrance (Palbociclib)
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Amazing journal Joyner. Thank you for sharing!
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Absolutely awesome journal Joyner! I could imagine myself sitting on the bow, grinning from ear to ear! I would have helped through the locks, the can be a trial, for sure. Your descriptions are so vivid that I can "see" it all! Thank you for sharing!
Safe travels,
Claudia
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Time for a cure, I wish that I could zap you onto this boat! We're halfway through the Trent-Severn Waterway now.
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I would like to thank everyone for all the information posted here. I’ve been lurking for a while, never having answers to anyone’s questions but getting lots of my questions answered without asking and way more info than my doctors office! I started on I/L in January; my tumor was about 10 cm and I have bone mets. My scan in June showed no activity in my bones and the tumor was about half the size. Within the last 2 weeks it has been growing and looks irritated and feels swollen and sensitive. I see my oncologist tomorrow and I am so sad to think I will no longer be on this medication because my side effects were minimal and I was just getting used to the idea of living with this. Does anyone know what usually comes next? I feel like this happened from stress. We’ve had some of that this summer
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Wandering, glad to "see" you and to hear your Ibrance dance has been mostly uneventful. Don't give up heart just yet. Ibrance takes a while to take full effect, and you had such good early response. It could be tumor flare, or some weird duct infection. Having said that, I think what comes next depends on the progression. My liver isn't currently involved, but when something popped up on the CT (ultimately deemed benign), MO was talking about taxol. I'll be praying that all is well for you.
Joyner, beautiful pics, keep 'em coming!
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Met with my oncologist today. For the first time since I started Ibrance (now on Cycle 5) my tumor marker went down. Not a lot but in the right direction. I told him it might be because we just came back from vacation (Alaska Cruise) and I did no cooking, cleaning, bed making, etc. etc. etc. No internet. Fresh sheets every day. Lots of good rest. Now I just need to lose the 4 lbs I gained while gone before my house guests get here from Houston.
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Hello Everyone,
I just returned from a trip to the Mayo Clinic in Rochester, Minnesota to see about surgery for my vertebrae that had lit up like a christmas tree on my June bone scan/ SPECT CT.
At Mayo they did a new MRI of my Thoracic & Lumbar spine. Then the neurosugeon showed me the films from my June-Bone scan, July-PET scan & new MRI. The tumor in my T11 vertebrae barely showed up on the MRI or PET, despite being so bright on the bone scan. Mayo refused to do the surgery that my local Neurosurgeon had proposed to do on me and I am so very thankful. The reason they wouldn't do the surgery is because it is a massive one, requiring them to open my chest to access the vertebrae from the front, and also because the tumor was still contained within the bone and not affecting my spinal cord or spinal nerves. Instead they offered me Radio Frequency Ablation (which I had done last Thursday) w/ a Vertebroplasty. My vertebrae was cracked vertically and across from front to back. The bone feels better now, but the spinal nerves coming from that area are rather annoyed right now. The docs said this could last a few weeks, but should pass. They have me doing a step-down pack of Prednisone which I start in the morning. Yikes!! Don't look forward to that.
The doctor who did my Ablation is a Neuro Interventional Radiologist and has done 500 of these procedures before me. He fried that blasted tumor into oblivion, then injected bone cement into the vertebrae. Out of those 500, he has never had a patient experience paralysis (one of the risks), but he has had 3 patients experience the nerve pain initially after surgery, and only one of those required surgery to remove some bone cement that had leaked out onto a spinal nerve. I'd say that those are very good outcomes. Despite the fact that this procedure is not curative, but only palliative, I am very hopeful.
My MO though has told me I will never be able to stop treatment since those sneaky cancer cells are in my bloodstream and we never know where they will take up residence. As soon as this pain subsides, I am ready to get back to LIFE!
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JunieB - hope all works well for you!
LXB - welcome to the group! I have fatigue from this treatment. I'm on Ibrance 100 and Faslodex shots (not Letrozole). It does seem that the ONCs don't think Ibrance causes this, but it's my belief that the low white blood count may contribute to the fatigue. The Ibrance brochures from Pfizer do mention it as an SE as well. There's lots of good info in this community, though hard to keep up with!
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Hello everyone!
Currently fighting a terrible mouth sore on my tongue and a mild head cold. But not so bad. I have my first CT Scan since being on Ibrance this Friday! Fingers crossed!
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Mountainlady - When I was at the Mayo Clinic I spoke with one of their MO's and she told me that the fatigue from Ibrance is caused by our lowered Hematocrit which can also cause shortness of breath during exertion. I found this interesting.
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Hi all -
Joyner - I so loved reading your journal! Thanks so much for sharing. Your pictures are amazing!
LXB - welcome here. I too have a very demanding job (IT Exec for a Global Mfg) and I have struggled to keep up as well. While fatigue with Ibrance is REAL, it dawned on me that some portion of my intense fatigue was actually related to mild depression. I worked to address that and saw some improvements - though about 1x per month I still hit a wall and need to stop, drop and NAP. Just something to consider.
To all those waiting on scan results (GrannyX it is crazy how much I read into the expressions of the techs (meanwhile the person is likely just constipated), I am praying for your good results
To those struggling with UTIs and infections and pain... please know I’m thinking about you. I just got through a 3x recurrent mouth infection and I think I finally kicked it with the right combo of meds.
I also have a tumor marker story with I will share tomorrow..... sleepy time.
Lauren
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JunieB, So glad you found a better treatment option. And it is also good to have some verification of SOB as a se from Ibrance, which we all knew but for some reason many MO's won't commit to.
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BTW Jaylea - I lose my voice for 3 or 4 days once a month. It is absolutely a side of Ibrance (according to Google). Mine usually happens in my off week and it eventually come a back. I hope yours retirns
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JunieB--thanks for that info from Mayo! That makes sense. I get SOB on and off and fatigue as well. Nice to hear a reason for it.
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Hi All- I want to chime in and mention a hopeful development: a subset of metastatic prostate, ovarian and breast cancers have a mutation in CDK12, and it was recently shown that these cancers are sensitive to immunotherapy checkpoint inhibitors, like Keytruda. Here is a recent story about a guy who got a great response to them, turned out he was one of the 10% of those cancers that have a CDK12 mutation.
http://www.dailymail.co.uk/health/article-6103647/...
http://www.cancernetwork.com/cancer-and-genetics/c...
The "hopeful" part is that small molecule drugs that inhibit CDK12 could do the same, and render metastatic breast or ovarian or prostate cancers with normal CDK12 to become sensitive to Keytruda- one CDK12 inhibitor is working its way to clinical trials:
https://www.syros.com/programs
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Junie B, fabulous news about Mayo Clinic! It is so very valuable to have you share in detail your own experience. We now know of the availability of that spinal treatment (when performed by the right hands) but as or perhaps even more importantly, we know that you learned firsthand how critical it can be to get a second opinion, even if you trust your doctor. Also terrific to hear an explanation of our mutual fatigue….that's a first.
Wandering, hooray on those tumor markers!
Oh, Lauren….so funny about the constipation and the scan techs! I'm sure that all of us are watching every facial expression of the techs during scans, hoping for a happy clue that all is well.
Cure-ious, WOW…..great article! This is so encouraging! Thanks for sharing. We're going to beat this sucker one day soon.
And on a side note, thanks to all of you who have read my travel journal….off today to the highest lock on the system…the Peterborough. Claudia, I could have used you to help wrestle lines and fenders today and to fend off the houseboats. There are 5 locks within 4 MILES and then the Peterborough. Whew.
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Hang in there Junie B....when I think of my SE it is nothing compared to what you have been thru. Thanks Curie-ious for the info. Joyner thanks for the journal...wow.0
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Hi all! Best to you JunieB with those nerves healing, hope all goes well and you get some relief.
I have a question for those of you on Faslodex. My last injection was 2 weeks ago and my nurse does it slowly and I don't get much discomfort. However, last night I go a burning and pain on each side of my buttocks where those injections go and it persisted all night. I am not sure if it was a delayed reaction or if it could have been my hip mets acting up, but it was on both sides. I took some naproxen before bed and it maybe helped a slight bit. I have had 3 doses so far and my next is due in two weeks. Has anyone else felt this burning a couple weeks AFTER the injection? I do take Claritin daily. I still feel it today but it is lessened.
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Thank you Cure-ious! Good to know they are coming at this all the time and from many countries.
My earnest hope is that "they" will move faster. Tick tick tick tick....⏳
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I went to my eye doctor yesterday because my vision was deteriorating pretty quickly. Cataracts. Both eyes. Surgery soon, I guess. I have to find the best guy to do it here. I'm zeroing in on that. I asked him if my cancer drug had anything to do with it. He asked a few questions and then said, "Ibrance, right?" He said it is not related but I thought it was interesting that he was familiar with the drug. Even my PCP is not. As far as the eye surgeons, one guy is 75. Nope. One guy only comes here from El Paso once a month. Nope. One guy has a big fancy building with all the bells and whistles and I'm calling them today. This whole thing seems ok because it is not cancer-related. Is that silly? Don't get me wrong. It is still annoying.
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Joyner; Love the journal and wonderful pics. I particularly find it interesting as I have family living in Bobcaygeon and Peterborough is very familiar to me.....not by boat though lol.
Lauren; I too lose my voice for a few days. This happened last week during my off week. I wondered if it was a SE.
Cure-ious; Fantastic article. It really does give us so much hope.... not just to survive but for a cure. Imagine if our children never had to fear the big C. I would be so happy.
JunieB; Thank you so much for telling us about your trip to the Mayo. It does make me realize the value of second opinions. I've never really thought about it before. But as Joyner said, even if we like our doctors it is sometimes very worth while. I won't forget that.
Best wishes to all and good luck with your treatments and scans,
Cathy
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jaycee, I had cataract surgery last year on one eye. I was going to get the other one done next year but with my dx I'm not sure if I will. It's not bad yet anyway. I won't say it was "fun" but it was minor, for me anyway. We went out to a steakhouse for lunch afterwards, LOL. There are drops to use a few days before and for a few weeks after, decreasing in frequency as time passes. It is amazing how much better I can see with that eye now! I'm glad I had it done. The only thing that got hurt was the pocketbook.
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Thanks, MT. I called the fancy place at 9:30 and got an appointment for Nov.15! That's the first they had. I am waiting for my eye doctor's office to call about the guy from El Paso. If the appointment is way sooner, I may switch. I hope it doesn't get worse while waiting for an appointment. I assume Medicare and my BCBS supplement will cover everything as they always do. The place I called this morning said they take Medicare on assignment (what Medicare pays). New glasses will cost me but that will be a while, the way things are going.
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Joyner great journaling. Do you have satellite? I was just curious as you seem to have no problem communicating while sailing. I am traveling across country and reception (phone and data) is sketchy.
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Thanks, Sandi! No,no satellite. Just using local internet connections as available. Sometimes really slow but GREAT at this moment. I’m uploading a bunch of photos and videos
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Cure-ious: once again great literature!
Im am finally able to resume Ibrance after a 2nd off week due to my infection and resulting low ANC last week. My ANC is now at 2.4, it has not been that high for a long time, therefore I can start cycle 13 tomorrow. Tomorrow is also my 1st cancerversary, I hope for many, many more.
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Jaycee: I went to get an eye exam about 6 weeks ago and new glasses. The doctor told me I needed cataract surgery in both eyes. He scheduled it for me (about a month out). They don't do both eyes at once - about 5 days apart. It was a pretty easy deal for me. The worst part was finding his office and the place for the surgery (two different locations). I am amazed at how well I can see now. I ordered new glasses off the internet. Super cheap (didn't want to spend a lot since the doctor told me my prescription could change in a couple months). So far so good. I bought some "fun" glasses. I got two separate positive comments on the new glasses yesterday. I'm really glad I got the surgery. Medicare and my supplemental insurance paid for everything but best to check.
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Hi to you all !!! Regarding side effects..I had UTI last week..not a bad one but saw cousin dr..sulfa fixed..There is an OVC drug to help with symptoms till you can see a dr..I told Onc last week on my monthly visit that my cycle not bad..just the UTI and vomited once..I had several UTI's on arimidex five yrs ago so ? letrozole....It is important to report SE to your pharmacist.When ONCO Med calls me to reorder Ibrance..they ask about I feel and that is when tell them about SE..Only way they can get a handle on them. I had the weepy eye..sometimes both..They looked it up and 6% reported this..My point probably be higher stats if we all pass on this info.
Had CT in July..no change in lung mets..YET!! Will have PET in three weeks.my dr sees me two days after!.Now have lymphedema ..rt breast off 10 yrs ago..nope not in that arm.Had triple negative left breast removed May 1..this year..yep that arm. Back on jet ski some canoeing and once in kayak..Feel a bit lazy cause of humidity..But guess I learned here..this drug ibrance might cause SOB..So I will report that next time..Course probably lung mets too..but.oh well !!!! Know I here for you all..
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Cure-ious- fascinating and encouraging! Am also enjoying all the podcasts put on by loveinphilly-called Breast Cancer Update podcast.(free in iTunes) The format is an MO narrator (Dr. Neil Love) and an MBA expert/researcher talking about cases with local MOs. It gives a nice look into the thinking and decision making and talks about many of the clinical studies being done.
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Jaycee - re: new glasses. I have had great success with zenni optical online. Complete glasses start at 6.99. You just need to know your prescription and then you have to measure the distance between your pupils in millimeters. I think I’ve gotten 6 or 7 pairs so far, including sunglasses. They are so cheap and the quality hasn’t been fine for me so far. They ship from china so it takes a couple weeks.
Good luck with your surgery!
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