Ibrance (Palbociclib)
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Cycle 1, done! I start my seven days off Ibrance beginning tomorrow. So far, no major side effects. I do get tired, but between this Texas heat and these beast blockers I am on, it's a toss up which one is the culprit. ANC is low, will re-test labs next week, oncologist said she will probably lower the dose from 125mg to 100mg, she also said fatigue is the most common side effect she hears. But she also warned me the fatigue can hit hard around cycle 2 and on....☹️ Something else I noticed; I no longer have the awful jabbing pain in my inflammed lymph nodes, hope that's a good sign, perhaps its wishful thinking or simply the power of positivity & prayer.
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Thanks Pat!! It def comes and goes and sometimes is quite mild to just not having an appetite. I did have a yummy burger for lunch today! Now I’m hungry again!!!! Time to eat :-)0
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hi Holmes! I too got some weird itchy bumps. Mostly they were on my arms and chest. But def not my norm skin prior to the meds. That has since cleared up.
Now I am dealing with a painful mouth ulcer that hasn’t gone away in over two weeks. Going to visit orthosurgeon to consider getting a wisdom tooth extracted that may be causing the tissue to keep staying irritated.
Other symptoms are hard to decipher from Ibrance letrozole Lupron and the xygeva but my biggest complaints are some serious fatigue that comes and goes. Some days I feel light and energetic and others I feel like I’ve been hit by a truck, achy joints, arms that fall asleep and ache all night, arthritic fingers, hot flashes, insomnia.
It sounds so crazy to say but even with these wacky side effects I am so grateful because the treatments are working and my 6cm tumor has shrunk!! And my bone Mets are now “sclerotic” which I guess means are healing. There was no evidence of active disease at my last scan. It feels like a not so terrible price to pay :
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Holmes I have had a constant cold during about 6 of my 11 cycles. Twice it got bad enough that I had to get antibiotics for a sinus infection. I’ve recently tried taking clariton dailyto ward it off and it may be helping.
Currently the cold syndrome isn’t happening but I have horrible gastric reflux which has gotten progressively worse to the point where today, while away on vacation, I had to go to an ER for IV fluids because I had not eaten any solid food for 3 days and was vomiting up even any water I managed to drink. I return home tomorrow night and see a new gastroenterologist Friday. My old one said the earliest she could see me was August 20th which I thought was pretty unacceptable for someone who can’t eat or drink. I don’t know if this is a new SE of Ibrance or unrelated.
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Liwi, I have terrible reflux on Ibrance so I am on Omeprozole. My GP (not my MO) tried switching me to Pepcid recently because she was concerned with long time effects, but it only took one day for the terrible reflux to return so I switched back. So terrible that I almost ended up in ER fearing a heart attack with so much chest pain and vomiting. My MO agrees with me that the reflux relief is more important than the potential issues. She is monitoring me closely for them.
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lovefromphilly- Congratulations on being NEAD! Thats what i am hoping to hear in September when i have my PET scan; although i know its probably a little to early.
Liwi- I am so sorry that you are feeling so bad. I get acid reflux but not to the extreme that I throw up. I'm glad you were able to get into a new doctor. I know doctor's schedules are busy but if you call and say that you haven't eaten in that many days they should see you right away.
love0 -
Not sure what's going on with me but my TM is now heading back into the territory it started at before treatment began and I'm developing pain which has a factor of about 8 to 9 out of 10 (I have a high pain threshold and pain is subjective, I know, so that's just a wild guess). Every day for the last week or two I've discovered a new pain site; some are my old "friends" and some are new ones. What I do know is that my upper body mobility is severely compromised at the moment and I can only take tiny steps so as not to cause the pain to grip me in a vice. Deja vu.
I've just finished my 21 days of Ibrance and will be having my first blood test next Tuesday so it will be almost 2 weeks before I see my oncologist. I decided this pain and worry can't wait that long so I called my oncology nurse today. I'm already taking my maximum level of pain meds so I needed advice. Unfortunately my oncologist and his registrar offsider were both unavailable but my nurse will speak to them tomorrow and call me back. She was keen for me to be admitted to hospital for obs and I'm considering it if the pain hasn't improved by Monday because I know that if I go to hospital on the weekend nothing will be done until Monday anyway so I've decided to limp along through the weekend unless something really catastrophic happens. I HATE hospital (who doesn't?!) which shows how severe this pain is.
I feel disappointed because to my lay person's way of figuring this out it would seem that Letrozole has been failing me since about June. We've been taking a wait and see approach until now but today I decided wait and see might not be the best tack to take so I'll see what my oncologist thinks.
Sorry if this post is a bit incoherent. I've filled myself up with all of my pain meds and am feeling quite drugged up!!
Any thoughts from our veterans and those who have been here before me?
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More interesting developments!!
Swift Gene-Editing Method May Revolutionize Treatments for Cancer and Infectious Diseases
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Chrissy- correction here! It was Herceptin that caused heart problems ...not faslodex! I apologize for the misinformation. That said, the SOB seems extreme unless you have other issues that might contribute. If it were me I would still get another opinion.
Holmes- I get mouth sores and skin spots during my off weeks...other than that I feel good so I just put up with them. I may try the yogurt...
Leapfrog-I am so sorry you are experiencing such pain! I'm with you on hospitals, but do get help if it continues. We don't want you suffering and there are other treatments that work!
Katyk- Haven't heard about ekgs...hope it's nothing (or something minor that does not need treatment!!
Great news LovefromPhilly!!So wonderful to hear you are doing well!
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I've been on I/F for 17months. Feeling like I have a constant cold/sinus has been the most consistent SE for me. I found that taking Mucinex twice a day works. I've had sinus infections but since I've added Mucinex to my daily mountain of pills, I don't get them as often.
I wish I had easy solutions for the other SE. But no, I just continue to play the Ibrance dance because it's working! 💞
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Thanks for the news, Joyner! Scientists have used electricity to move DNA into cells for a long time, but it sounds like they just figured out a way to make it work for T cells. So now they can precisely edit genes in T cells, rather than stick them into a virus, which will integrate into random places in the chomosomes (some of which may be useful and some not, and some potentially cancer-causing themselves). It means they can exactly fix an inherited mutation giving rise to a childhood leukemia, for example, and introduce those fixed T cells into a patient for a complete cure. Or mutate the T cells of an HIV-infected person to make sure those T cells will never get infected; influse lots of the new edited T cells back into the patient and take them off of all of their anti-HIV drugs. The virus will get reactivated when the drugs are removed, and will kill all the T cells that were already infected, but the virus won't be able to get into the new modified T cells, and pretty soon the patient has all new T cells that are uninfected and can never get infected. Hope it works!
For cancer, what it means is that they can engineer the T cell to attack cells that express some cancer cell-specific protein on their surface- this is the technique called adoptive T cell therapy. It will allow for them to make the ideal T cell they want to be attacking our cancer. They can also engineer them so they won't go through a process called "T-cell exhaustion" and crap out. We want engineered T cells to hunt out our hiding cancer cells 24/7 and not to die off in a matter of a few weeks or months. There are other problems people are working on that need to be overcome in order to get this to work for all solid tumors, such as how to get the engineered T cells to get access to all of the tumor mass, and how to expose the tumor to the immune system, removing the shields they are hiding behind. But progress is being made on all of these fronts, and this is another big one!!!!
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leapfrog- I'm sorry that you are in so much pain. I know that you said if you go now nothing will be done but at least they can make you comfortable until you revisit the plan with your mo.
grannax- I'm glad I'm not the only one constantly taking mucinex. But you're right it is wor
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Cure-ious, thank goodness for you and your explanations!! So helpful and so encouraging in general. Progress!
Leapfrog, I hope that your onc helps you quickly with this pain. Good luck-
Seaway, we'll be thinking about you and your scans tomorrow. Best of luck for a great outcome!
Hugs to all-
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Hello all you lovely ladies!
Haven't been on in a while--trying to catch up on all the great posts!
njgirl13 - I was 43 when diagnosed, 10 years ago. I have 16 year old daughter and I'm still fighting! It's hard to be so young, but there's many of us here that have proved we can endure.
Thereishope4us - your quote a while back, "I loaded up on vitamins, protein, ginger, garlic and exercised. I was also told to move around right before doing the blood work as the white blood cells tend to stick to the walls of the vessels." That was really interesting! I'm going to try that.
My ANC is always lower on day 28 than it is on day 14 or so. And it can swing. Last month on day 14 it was 2.4, which is great for me. 2 weeks later on day 28 it was .8. Sad. But so far they haven't changed anything.
Holmes - I've had mouth sores before. Here's what works for me. To prevent them from happening I use Biotene mouth wash. ONC said that sores can be caused from dry mouth. The Biotene really works. However, if you already have sores, ask your doc for Magic Mouthwash. Its a prescription that the pharmacy mixes that has several things in it. It's excellent to heal existing sores.
Question for all-- when I read a lot of the posts, it seems that many of you ladies have mets in the bones and lungs. I had lobular breast cancer and it originally metastasized to my ovaries, which were removed. After being NEAD for almost 7 years, it came back in the peritoneum (the lining of the organ cavity and covers some of the organs). Does anyone else have peritoneal mets?
Hugs to all!
Debbie0 -
Leapfrog - so sorry to hear you are in so much pain
is it pain from the bone Mets? Please keep us posted and sending you a bear hug 🐻
I feel like I wasn’t in pain when I got diagnosed with extensive bone mets- and my MO said that I was very lucky and we were gonna do everything we can to keep that from happening. I am always pretty basically and generally a bit uncomfortable but I blame the medications I am on. Some days are worse that others.
I feel some days a little bonkers cause I’m so foggy headed. Does anyone else experience this? I have never had IV chemo and so I know This prob isn’t like the chemo brain people describe who are getting IV Chemotherapy but is anyone else as whacked out sometimes as I am?0 -
Dear Love...I am also foggy at times. My DH seems to understand and doesn't mention it, but it bothers me sometimes. I crochet a lot and now I have to keep track of my counts right on my patterns whereas I used to remember them. I have to redo a lot more stitches! But I am ok with that. It looks like we have similar dx and history. I call it chemo brain because that describes it best. I think it is ok that we do that. We have enough struggles without having to worry about labels.
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Question for all-- when I read a lot of the posts, it seems that many of you ladies have mets in the bones and lungs. I had lobular breast cancer and it originally metastasized to my ovaries, which were removed. After being NEAD for almost 7 years, it came back in the peritoneum (the lining of the organ cavity and covers some of the organs). Does anyone else have peritoneal mets?
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MountainLady, there is a thread dedicated to peritoneal carcinomatosis a few posts down 😉
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LovefromPhilly....Yes the pain is bone mets pain. I have extensive mets from skull to femur, including sternum, ribs, neck, hips but the worst pain is in the spine - one in the cervical spine, one in the lumbar spine and one in the sacral area. It feels as though a new one has popped in for a stay between the original cervical spine one and the lumbar spine one. I'm very glad for your sake you don't have serious pain because it's known to be the sort of pain you're better off without! Mine is caused by tumours which have grown in the bone, causing the bone to stretch and then micro fracture to accommodate the growing tumour. Not nice. Don't get too worried about your brain feeling foggy. I haven't had chemo either but I have a lot of memory blanks and sometimes I have speech aphasia which I hate because finding the right word was always a strong point with me. I now stammer quite a bit - lots of ums punctuate my speech! We have a lot to deal with and cancer itself makes us tired, not to mention any meds we might be taking. For me I use the excuse of the pain meds but we do have a lot going on. Shock, denial, coming out of denial, acceptance, wondering about our treatment, explaining to friends what's going on in our lives. I could go on but you get the gist.
Thanks to others who replied. My oncologist called me today and fortunately the worst pain has eased somewhat so he's left it to my judgement whether I admit myself to hospital or not. I'll most certainly take your advice and go to hospital if the pain becomes unmanageable again. I'm not looking for a medal.
Speaking of SEs, which I noticed further up the thread, a constant UTI seems to have taken up residence despite my obsessive hygiene efforts. Just one of those things we get to remind us our immune function is down
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IntoLight, I also crochet a lot, and have frogged more stitches in the past year than in my entire life! I also started using stitch markers, for the first time ever, and keep a printed copy of the pattern for whatever I'm working on, with me at all times. But as long as I can still crochet, I'm happy!!
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Leapfrog thank you for sharing. That sounds like you are managing a lot of things. I am amazed at how all of us can be positive. I am also grateful for this space to vent!
I think that the combo of Lupron letrozole Ibrance and xygeva has hit hard this month and I just kinda had a fatigue meltdown these past couple days. I love to exercise but getting myself “up and attem” to actually do the exercise is a struggle. But it really helps with the achiness!
The thing that is hard for me to decipher is, is the achiness from the meds or is it bone pain that I was never aware of before because I would have never guessed that my stiff neck or painful lower back was due to bone Mets and not because of basic muscle tension? This is the mind bender!
I get this very uncomfortable both arms fall completely asleep at night and my shoulders ache from my neck down to my elbows - soooo uncomfortable! I can’t figure out if this is because of some positional issue and that I’m compressing my ulnar nerve in both arms or is this related to mets? I don’t even know where to begin trying to figure out how to find the answer.
Well it is a new day and I am going to get up and have coffee and make a yummy smoothie for breakfast and MAYBE get myself to lift a few weights!
Hugs to all! Brenda0 -
Brenda, I also have arm discomfort/pain at night. I am trying to force myself to sleep on my back rather than my sides to see if this helps which is tough because I have enough trouble getting to sleep as it is! Ugh! Thanks for the hugs, Chris
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Here are a couple of articles on new research that I just came across! I'll confess that I've been on a little bit of a high (just a very little one when I'm not feeling low
since the Aurora A discovery was published a couple of weeks ago, and have this feeling in my gut that all of this exciting research is truly moving us into a new era.This reseach looks like it's further away from application but still perhaps very promsing. Of course I'm always grateful when Cure-ious or others who understand this a whole lot better than I weigh in:
https://www.fiercebiotech.com/research/using-crispr-to-turn-cancer-cells-against-themselves
https://www.nasdaq.com/press-release/publication-by-vbl-therapeutics-highlights-mospd2-as-a-potential-new-target-for-breast-cancer-20180710-00456Leapfrog, last but far from least my heart aches for you, but I also have to tell you I'm inspired that you can be (or at least sound) so strong in the midst of that kind of pain. Wow. The women here really are something!
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Leapfrog, I was just wondering about you. So sorry to hear of your pain recurring and hope your recent improvement continues. But I second the advice that if it continues, hospital would be the best place to get an upper hand on it.
I've been having a heck of a time coming off a rough cycle at 125mg. After a 16 day break, I'm on cycle 12, day 7 at 75mg. SOB, rapid heart rate, strong fatigue, and now a raspy voice. (I sound like a 90 year old smoker). Sounds like we're all in a funky place.
Cure-ious, Joyner, Iwrite, I always think it but forget to say it, thanks for your research and insight. Love to all this weekend.
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You guys are so great!! Just continue on being awesome, Penny!
My family and friends disapprove of me spending time this site, because they think it will just depress the crap out of me and I should be spending more time doing anything else and living in denial, but its the opposite, it like to hear how you guys are coping, what you are thinking and trying, and what you find in the research, almost daily.
when I was first diagnosed I went into a big slump,my ONCs had said MBC could not be treated with immunotherapy, but what got me out of it was reading papers that said there was no reason why that should be true , we just have to figure out how to make these cells sensitive. And following all of the progress and the trials, its been amazing, very fascinating. If instead I had gotten some other cancer types, or Parkinson's or Alzheimer;s, there would not be the hope that we have. Doesn't mean it gets here in time to save me, but at least it is real hope and I'll happily take it, as long as I can.
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i had a lot of reflux issues too but i cant blame ibrance. Just this winter i went through the hassle of gallbladder disease and removal. I was on Nexium for it . Then after surgery and pancreatitis i could not eat at all. Couldn't see dr for 3 weeks. Pharmacist suggested i take Digestive Enzymes. OMG! A miracle. Not only could i eat but i quit Nexium cold turkey. Thats a big nono. Id consider adding digestive enzymes if you have trouble with acid reflux.
O i belive my reflux issues began 7 yrs ago when i was on letrozole the first time.
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I was so looking forward to having my big scan yesterday. Then around 1 in the morning I had to get up to go to the bathroom and was so dizzy I was bouncing off walls literally to get there. Then along with that came the vomiting. I spent the next twelve hours so dizzy and sick that I had to cancel my scan...which the lovely lady rescheduled for Tuesday. I also missed my pills for a day which I guess is ok. I've had this once before but more mildly so I'm thinking that this is my se with Ibrance and Letrozole. I'm sort of thinking it's the Ibrance as I've been on arimidex before way back when and had no side effects. Anyone else have this? I hope not but.....
Leapfrog and others, I'm so sorry for all the pain those bone mets are causing.
Cure-ious. I'm so grateful for all your input and I understand totally what you mean. My family is all about focusing on the positive lol. Except for my children.
Wishing you all the best,
Cathy
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A very good friend posted this poem on Facebook this morning. I think it was for me. Now, I give it to you.
"Hope" is the thing with feathers
BY EMILY DICKINSON
"Hope" is the thing with feathers -
That perches in the soul -
And sings the tune without the words -
And never stops - at all -And sweetest - in the Gale - is heard -
And sore must be the storm -
That could abash the little Bird
That kept so many warm -I've heard it in the chillest land -
And on the strangest Sea -
Yet - never - in Extremity,It asked a crumb - of me.
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Thanks for that poem, jaycee49.
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Great poem on Hope, and very timely for me.
I haven’t posted in a while, because I’ve been dealing with unpleasant scan results from the end of June. It looks like Inrance and letrozole aren’t working for me. It also looks like cancer has spread in my abdomen, causing me to experience intermittent bowel obstructions. So, I have been working on how to deal with all of that. My MO here in Atlanta wanted to start me on Eribulin. I was pretty depressed that I’m already on my third line treatment. But, let me tell you what this group has given me. I am empowered by all of your experiences and posts and collective wisdom. I know some questions to ask, and feel empowered to ask them. I know there’s a lot happening in the world of BC, and I knew I needed to talk to someone who is dialed in to all that research. I think this group gives us so much more than just a place to vent our frustrations (although that’s a critical piece). It gives us a community that understands what we need and feel. That’s priceless to me while I go through all of these ups and downs.
So, I booked a flight and went to Boston’s Dana Farber to meet with a breast cancer specialist there. She gave me something I badly needed HOPE! First off, she thinks I have been responsive to Ibrance and that it’s too early to write it off. Also, she insisted I get a biopsy of my abdomen so we can know what’s happening. She told me I can in fact try immunotherapy at some point. And she says there are more than one clinical trials happening that would be great for me. She’s going to be part of my treatment team, and I can continue to get treatment here. My MO is working with her to make my new treatment plan. Now, I’m just waiting to see what my biopsy shows, because I might have to focus on ovarian cancer for a minute before I get back to BC treatment. No matter what happens, I feel like I’m part of all of this decision making, instead of just along for the ride.
Happy saturday to you all!
Missy
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