Ibrance (Palbociclib)
Comments
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Singlemom - I have a couple of lymph nodes that light up and go away in scans. Infection is indistinguishable from cancer, and lymph nodes get infected, so what your onc is saying makes sense on that score.
I'm on cycle 15 and pushing my scans out 4-5 months. My plan is to go to every six months in 2018 if I remain stable this year. It is done when things are quiet. You can always ask for a scan if your feel things changing .
In sum, awesome news. Your onc has given you permission to relax, exhale and get on with your life. I don't think there is anything better for healing. Go for it.
>Z<
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Singlemom- awesome news! So encouraging
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hi all!
Just checking in. I had a bad feeling about my appt yesterday, but my ANC of 1.5 is good to go, so I'm starting on cycle 10, 100mg 21days on, 7 off. Don't know why it's so much better this time than last but I'll take it. Very few SE's, scans on the 20th. I'll check in again with everyone. cheers, dee
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Hello Dee! Congrats! On to cycle 10 for you.
I am in the first week of cycle 15.
>Z<
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Singlemom - Nice to hear from you and your good results! I hope you can enjoy some travel again soon. Dee - rooting for you! Andrea - agree with Z that if primary tumor is in lymph nodes, etc surgery may not help. If cancer cells have already entered your lymphatic system, the cards may have shuffled. Please let Ibrance do the heavy work now and hope you respond fast. I start round #16 on March 13th at 100mg. I am tired but still working full time. Tonight's drive home was 2 hours. ugh
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Andrea1111 - I know how you feel....would love to hear some stories of 30 yr survivors with stage IV BC! I have started to seek out people I hear about that are long-term survivors to hear their stories. Just chatted with a woman that had stage IV TNBC docs told her to get her things in order so she went to an integrative center with a team that included an MD Onc, naturopath, mind-body worker and very caring nurse. That was in the 90's and she is still NED! I really believe the combination of oncology, exercise, nutrition, mental state and environment are all equally important! But it is hard to pull together that team as so few cancer centers offer integrative care.
Singlemom - 19 rounds….that is awesome! How are you SEs? I also wonder if many of the SEs this group is struggling with isn't from the Femara (letrozole). Are you taking anything in addition to the Ibrance?
Dee…..great to hear cycle 10 and few SE! Are you taking anything in addition to the Ibrance?
I have just finished cycle 2, starting my 7 days off. My WBC started out low at 2.3 and actually went up a bit after my first round to 2.4. Have blood draw again next week. I do feel a lot of fatigue but thinking that is from the 3 weeks of radiation as I seem to be getting stronger each day?
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It seems there are many new Cdk4/6 inhibitors being developed and tested. Here's one (G1T38) I had never heard of previously that is trying to fine tune the inhibition to act only against the tumor, and not suppress bone marrow and blood counts. It is currently enrolling for phase 1/2 trials against both triple negative and ER/PR+ breast cancer.
According to the developer, G1:
- Preclinical data presented at the American Association for Cancer Research 2016 Annual Meeting demonstrated that G1T38 is more potent and has less toxicity than other CDK4/6 inhibitors in development.
- A recently completed Phase 1 trial in 75 healthy volunteers demonstrated that G1T38 was well tolerated with no grade 3/4 adverse events and no serious adverse events.
http://cancerres.aacrjournals.org/content/76/14_Su...
http://www.g1therapeutics.com/pages/pipeline/G1T38...
http://www.g1therapeutics.com/pages/clinical/G1T38...
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Perky - you are fortunate to live in Washington with a number of great integrative options for cancer care. Dr. Brian Lawanda is a radiation oncologist, but he is also one of the leaders in integrative cancer care.
LifeSpring Cancer Center is not clearly integrative, but they explore treatment options beyond the standard model like low dose metronomic dosing. I will be visiting them if I ever move to chemo.
Dr. Chad Aschtgen is a Fellow of the American Board of Naturopathic Oncologists (FABNO) in Seattle who works with the Institute of Complementary Medicine. There are a few other FABNO's in Washington State.
The key is to find someone who does nothing but cancer and preferably someone obsessed with breast cancer in particular.
In my experience, Ibrance plays very well with complementary care. Only one of the supplements considered was stopped due to possible interactions. Historically only cancer treatment strategies that hit the cancer from multiple fronts have been successful. You have to corner it. Complementary approaches add a few more lines of attack to the standard of care and I think they are very powerful ... in combination with the standard of care.
>Z<
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I've been stage IV since 2011 that they know of. I am sure it was there longer just not detected. If I ever get my dam platelets up I am hoping to start Ibrance and get some more years in. Started Clairitin today to see if it might possibly help with the skin burning. Usually get it by day two so will know tomorrow.
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Hi All,
This is my first post on this site. I was diagnosed with BC in 2013 (Stage 2b),
had lumpectomy, radiation, and told no chemo. needed. A recent CT scan of my
back showed tumors in my right rib and tailbone. Stage IV MBC. Wow. Hasn't
even sunk in yet. Started on Femara, and just got approved for iBrance. I'll post
once I start taking it (on Monday so I can keep track).
Glad to have found all of you for support
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booboo - as these things go, you are in a good position to do well. bone mets plus hormone positive cancer mean you have a cancer that moves slowly and is generally treatable. welcome. let us know how the ibrance goes.
>Z<
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Andrea, whether to do surgery for stage iv has to be individualized for each patient.Talk to your onc and get a second opinion if you like, so you can feel comfortable with your treatment plan. In my case, I had a new breast tumor along with the liver mets, and it was hard to understand not doing breast surgery. I must have asked about it for three appointments in a row. But my doctor was concerned that surgery and anesthesia could stress my body and could possibly promote mets. As it turned out, the systemic therapy made the breast tumor disappear and it can't be felt, or seen on ultrasound, MRI, or PET. So I encourage you to give your systemic therapy a chance (Ibrance and anti-estrogen drug). Also, lymph node surgery would put you at risk for lymphedema, and we want to avoid that if we can. Finally, with surgery you would probably have to go off your systemic therapy for a while, and since the cancer has already spread, the systemic therapy is very important. That said, surgery is occasionally recommended for particular stage iv patients.
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Singlemom1, I would ask the doctor why he/she wants to wait 6 months instead of 3 or 4 months for a scan, especially since your tumor markers are not helpful for following you. Even after I got to NEAD, I had scans every three months. Recognizing that every case is unique, I would want to understand the onc's thinking. Perhaps it is easier to monitor lung mets with watching for symptoms. In general, I feel the fewer appointments the better because that means less bc stuff interfering with my life.
Booboo, welcome, and what Z said.
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woke up with the skin pain at 4 am right on time, day 2 post chemo 😰. Have to go to the cancer center this morning for Iv nausea Med's and hydration and I'm going to ask for a prescription of the lidocaine ointment someone mentioned. If only my dam platelets would come up I could stop the A/C and start Ibrance.
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Booboo - welcome! Sorry you have to join us but you have found a great support group. As Z says, there are great options for those of us with bone mets.
Z- thank you so much for the Seattle links! I had been seeing a FABNO NP but it seemed her only focus was supplements and she really didn't listen to me when I gave her feedback. I am looking for somebody or a clinic that uses additional modalities. Supplements are important but like you said, don't just want to us a hammer. Meeting with another next week but doing additional research. May be that I need to stitch together a team on my own. Found Qi Gong incredibly helpful for reducing stress.
Also agree with you that if I ever have to do chemo again, I will be seeing Dr Chen at LifeSpring!
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thanks to all for all the info!
Just finished my first round of ibrance. Not many symptoms; nose bleed, mild fatigue, thining of skin, a few mouth sores. I brush my teeth with baking soda or gargle with baking soda, seems to stop the sores. Impressed how well l feel this week being off of ibrance.
Wish the best to all
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Update from my first scans from being on treatment for my mets diagnosis. I'm on a phase 1 trial with Gedatolisib for PI3K pathway. Been on treatment for two months. My doctor called me and said my bone scan was improved. My chest CT was still showing no organ involvement. My abdomen CT results were not back yet but she didn't expect any changes! I am so happy I have only had bad news for over the past year feels good to have some positive news!
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pinkpunk - swishing your mouth with bioactive yogurt - yogurt with live bacterial strains - is another trick that will help keep both your mouth and gut full of good bacteria. It is good for mouth sores and for fighting cancer. I make my own to make sure the yogurt is really chock full of bugs.
Perky - QiQong is awesome. If you don't have your exercise, diet and sleep optimized to fight cancer, there is nothing meaningful docs, complementary or otherwise, can do to help you. We have a stage V fitness thread where we keep ourselves motivated to move. Hope you can join us.
I have worked through five different complementary docs ... two online, one locally, and two that I have travelled to visit. Two have risen to the top and are currently advising me. It's worth taking the time to build your team, especially when things are not in crisis.
>Z<
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APG - Congrats on your wonderful news!
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Andrea, and anyone else who still has their primary tumor- although it seems paradoxical, it is even possible that there may be an advantage to not surgically excising the primary tumor. This comes from preclinical studies showing that immunotherapy is wa-a-ay more effective if given as neo-adjuvant (before surgery) than after; the thought being that the immune cells can 'prime' for their targets off the cancer (tumor) cells and mount a stronger response. whether that remains true after other treatments are given that shrink the original tumor is not known, but still an interesting concept..
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Hello Ibranciers! I have been MIA from this thread for quite a while. Happy to see some of the same people still doing well on this tx. Sad to see so many new to stage IV, but glad you are getting Ibrance as it (plus Faslodex) has gotten me to NED for over a year. I have moved from 3 month scans to 6 months, and se's have been tolerable. I have been on 125mg the entire time.
So one of the tolerable (but still undesirable) se's has been thinning hair and splitting fingernails. Made an impulse buy of a bottle of biotin this week and am wondering if anyone has been told this is not advisable with Ibrance. I will also pass it by my mo, but would appreciate hearing anyone else's experience. Thanks!
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Booboo1 and any other newbies reading,
My heart goes out to you, you are still in the shock and awe stage after learning you have mbc. But please don't plan your funeral just yet (as I did when 1st dx'd)! There are many new tx's (and more in development) that will allow you to live a pretty normal life for many years to come. If you are in pain now, you are very likely to feel better after starting treatment. If you have no symptoms, so much the better! Make sure you have an mo you feel comfortable with and get all your questions answered. I believe (some will disagree) a biopsy of your mets are important for best tx results as it is possible for mets characteristics to be different from primary. Arm yourself with knowledge and get help (rx or/and counseling) if you start to slide into depression. This forum is a fantastic place for both information and support. So glad you found us! Sending hugs and hope to all.
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Dear Jobur,
Thank you so much for your reply. I can't express how glad I am that I found this
Forum, and all of you who are going through MBC. Your encouraging words
mean more than you know. I, too, have been planning my end of life strategy,
and it's good to hear that I may be a bit premature. I hope and pray that you
are right. I also have sarcoidosis, and recently had a pacemaker put in as
a result of this autoimmune disease. My oncologist does not think it should
have any interference with my treatment plan, but sarcoidosis presents a
very compromised immune system, so I'm hoping she is correct.
Anyway, I thank you again for your encouragement. I am ready to fight
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Zarovka,
Thank you so much for posting. Right now, I need to hear this kind of encouragement.
I have been dwelling on death, and from what I'm reading and learning about MBC,
it's likely I have some years before I need to go there. Does anyone know whether
tumors in more than one location in the bones means a shorter life expectancy?
Or is that not necessarily correct? Thanks again for your kindness and reply.
I am blessed to have found all of you
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once again thanks to all... I feel so much better after reading your posts and suggestions..
Z Trying the yogart swish. Too soon to tell If it's better than baking soda.
On my first 7day break and couldn't believe how fast I felt energized. Didn't realize I'd been fatigued, also easier to stay hydrated. But se have been mild. I'm pron to bad leg crams, which were totally missing for the 21 days on ibrance, then returned the 4th day off. up all night so hopefully they will go away once I start again. Any one else had this problem or seen similar results?
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Hi Jobur - I have been taking biotin 5000 mcg chewable pills for about a year. My splitting nails stopped, but not so much my hair loss. Booboo - you will get through this, please try Ibrance for 4-5 months to see best results. Don't beat yourself up over planning. All of us (with MBC or not) should have wills, trusts etc. so that we can plan for the future.
(()) Claire
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Booboo - There is a phase when we all obsess with death. I think it is well advised to look at the ugly facts head on, frankly. This is not a good position to be in. You do have to feel the loss and fear and all that stuff. But you do get to the point where you integrate the new reality into your life and life is still pretty good. And so you keep going, enjoying each good day a little more than you did before. Overall, we're all both grounded in reality and happy. But it is a process to get there and there way to it is through some pretty dark places.
Pinkpunk - Some people do great on their week off, some people actually feel better the first two weeks they get back on Ibrance. It's very personal. I am in the latter pool. The main thing is to keep that high level of awareness of what is going on with you. These are tough drugs and you need track the patterns. Otherwise it is hard to distinguish when something is actually wrong from the expected side effects.
Watch out for UTI's.
The new folks seem to be doing very well, which makes us all happy.
>Z<
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Z - I see you have mentioned the UTI's more than once. I am just curious if it's an ibrance thing? A lack of hormone thing? Or something you have learned by your masses of research! Last visit My doctor asked me if I was experiencing symptoms related to a uti and I just thought it was strange for them to randomly bring it up. Now I am starting to think they can be common.
Apg - awesome news so far on your scans. Keep us posted.
Welcome to the new people. I am fairly new myself. this a great place for support and knowledge.
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Hi,
Starting Ibrance and Femara tomorrow. I've been getting treatments for BC for eleven years. I'm still feeling good most of the time. I'm a little complicated because I also have Carcinoid Cancer that started in my small intestine and spread thru four nodes into my liver before I even knew it existed. So...I'm on treatment for that cancer too. My oncologist and surgeons tell me I'm very rare. My biggest problem right now is healing my leg where they took donor skin for a skin graft to close my breast after they removed as much skin and tissue as they could in December. Having an open wound for three months is a pain but I know it could always be worse. I'm hoping the IBrance doesn't split it all open again. My doctors warn that is a possibility. Have any of you ever had a skin graft?
Thanks,
Nancy
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Nancy, hi and welcome to the forum. My experience is not really similar to yours but I do have a skin graft on my right hand and I was on Ibrance last year. My skin graft is from 2013 though so it's not recent. I do have to add that they amputated the tip of two fingers on that hand and the graft on the tip of the index finger hasn't healed completely even after 4 years, so yeah, graft skin must be handed with care. Sending you good vibes that the graft continues to heal and that the Ibrance works.
Aurora
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