Ibrance (Palbociclib)
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Sounds as though you had a virus on board before starting the Ibrance. I would still call in to your MO if the fever without tylenol is greater than 100.5. I am just finishing my first cycle of the Ibrance/Letrozole. My WBC was about 3.5 after one week of Ibrance, which I think is probably still adequate for fighting garden-variety infection. By week 3, I was down to 1.7, but my MO says I will bounce back this week on Letrozole. I am to have a dental cleaning this week, and he said OK if count is 3 or greater.
I would like to ask about how others feel during the week of just Letrozole. My pain diminished so much after starting the Ibrance, but about 3 days into the "off" week, my back pain reared it's annoying head(mets primarily in thoracic spine). Anyone else notice this? Also, I have this weird tissue swelling around my lumpectomy site. Am being treated with antibiotics, but it doesn't really present as infection. MO and breast surgeon a little mystified.
Wow, this discussion board is reassuring and inspiring! I see great posts from knowledgeable and remarkable women! love and best wishes to all!
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I have been taking it 21 days on and 7 days off since January 2016. I went off for one month thinking I would feel better to travel but I didn't. Seems like the longer I take it the less side effects I feel. When I first started I was really sick and really sleepy. But since I have been taking it my tumors in my liver have gotten smaller. I have metastis in my adrenal gland, liver, spine and right arm as far as I know and I just had a PET Scan last Wednesday and got this info Friday The only other thing I have had trouble with Is the shots I take. I perspire really bad. Feels like HOT FLASHES all day long.0 -
Dear Windycityfan,
Welcome to the community. We are glad that you reached out and shared some of your story. We look forward to seeing your posts here. Let us know if you need any help navigating the boards. The Mods
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Ugh! HOT FLASHES. Mine started this month. I just finished 3 cycles on ibrance/letrozole and have had no side effects except for hair thinning and .... hot flashes
Anyone have advice on how to minimize them? Big picture I'll deal with them GLADLY in order to stay on this treatment and keep living a full life, but I must admit I wouldn't mind saying goodbye to them.0 -
Eelder, I am getting ready to start cycle 16 and I feel like the hot flashes are worse then ever! I have absolutely no tolerance for any kind of heat. The sweat runs down my face and the back of my neck and my face gets beet red. I especially have trouble at work as its a physical job. I freeze my coworkers out with the air conditioning and still have a fan blowing right on me. Anybody else find this to be true? I was never like this before.
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I don't have hot flashes but I'm not enjoining 95 degree wearher and humidity Which I would love to go beach before this. Maybe hot flashes are age related. I'm 64 soon so maybe that's why it's worse for some than others due to age?
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I'm 40. So the Lupron shots put me into menopause. I was not in menopause prior to my diagnosis. I was good for two months... not a single hot flash. This past month (month 3) I've noticed them. I don't think mine (at least so far) are as bad as some, but I do worry they'll get worse. Again, I'll put up with it.... but if I could find a natural remedy to help with them I'd love it.
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My chills/hot flashes are much worse since I changed to Ib/Let combo, I've really noticed a difference. I couldn't find a natural remedy other than an ice pack on my neck which isn't always convenient. But I take 600mg of gabapentin at bedtime to keep the night sweats at bay.
On a good note, my MO prescribed a special compounded Magic Mouthwash which is really working well for me. Worth the cost IMO. cheers, dee
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Re: Hot Flashes
I've noticed the hot flashes getting worse over the last 2 or 3 months. Fortunately they don't last long but they are more intense than they were. I had hot flashes with Tamoxifen also but they were mild. The hot flashes I experienced during menopause (I was 50) were nothing compared to what I experienced with Tamoxifen and now Ibrance\Letrozole. But still they are tolerable, so far. Just annoying.
LoveMaltese - I live in North Andover Mass and my in-laws live in Newburyport. It's a beautiful area. Other than the sticky heat I'm sure you enjoyed your time with family there!
Cathy
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mmerz, I would definitely call your onc first thing Monday.
I have awful hot flashes, too! I like that idea about the ice pack. Will try that!
Question: I have two small lesions in my lungs, and so got put on the ibrance/letrozole. My TMs went down a little, then up a little, then up again, and down a little again. They stayed pretty near 50. After my first cycle on a lower dose of 100 mg, however, they shot up to 61. The highest they have ever been since I have been paying attention to them. Is this normal? I think I read somewhere here that when the tumors break up, your markers can go up but then take a dive. (hope hope) Anyone experience this? (This is my fourth go round. This is the first time, though, the onc mentioned mets and Stage IV. The time before this, the tumor was in a lymph node on the opposite side of the original BC and the first recurrence. I have since moved and so have changed oncs. But do you think that previous recurrence could have been a mets, too?)
I appreciate all that y'all share on here. I am sorry I do not have more to bring to the group, but your postings have helped me a lot.
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Just finished my first round of IBRANCE and this is my off week! HOT FLASHES have intensified since I've been on IBRANCE I asked my oncologist about this last week she said that this is normal. The only other 2 (slight side effects) I have had is a rash on my right toe but since I am on my off week this has gone away. The other is heartburn...I asked my doctor about talking a indigestion pill like I had take on XELODA she told me she was having her pharmaceutical in house call Pfizer to make sure what I can take with this pill IBRANCE.
Has anyone had on here have indigestion? Rash? This is all so new and not much info out there on this drugs interactions with over the counter drugs or food
In closing I want to thank all of you for being one of the most amazing support group plat forms!
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I had a rash earlier in the year and it's back again for my 7 th cycle. It goes away and it's not bothersome.
No advice for hot flashes. I can't take the heat and humidity either. My RO wants me to drink extra water.
Yes I've noticed my pain is worse my week off. I typically don't feel great until I start back. Definitely different than iv chemo.
I haven't tried Claritin yet. But cymbalta greatly reduced my pain AND sleep:( I may try to change to night and see if that does anything.
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re: Hot flashes, I was going to suggest Cymbalta and /gabapentin both of which I take for hot flashes/night sweats. Whenever I stop taking Cymbalta the flashes come back so that's how I know they help. Cymbalta also helps with joint pain and it's an anti-depressant. I have no se's from taking Cymbalta.
Aurora
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Zar that's so interesting, about Alpha lipoic acid? Is that widely known? What kind of therapy is this, could you explain. Do you think I should ask for this when we visit the new doc? And Zar sorry, but I am perplexed, what's the idea that you could leave the issue of the liver to the side, from my experience these tumors if they are not taken care of they could really proliferate no? I have no intention of scaring you, it's just that Dani is facing these issues, and I wonder how aggressive we should be with this. Z how lovely, have a great time.
Carol there you go, enjoy every minuteWarm hugs to everyone...
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Key2, I know what you mean about indigestion! It is awful! I have found nothing that works so please let me know if you discover something. I, too, have a rash that appears mainly in my third week of the cycle. I have it usually on my chest but this time also on my arm. My onc referred me to a determatologist who gave a me a cream and did a biopsy. (radiation dermatisis vs SLE? or something like that.) Should get the results this week. She did say that dermatitis acts up when your WBC is low. But the itch is awful!
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Cathy- I never realized you were that close. Maybe we can meet up sometime!!
Hugs Carol
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Hi Carol,
I'd love to meet up. Are you visiting Mass or do you live here? For some reason I thought you lived in NY and came to MA for Dana Farber. I used to live in New York - Manhattan for 12 yrs and Westchester for 8 years. I've been in MA for 13 yrs.
Cathy
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Arbojenn - The doctor told me she thought I could use tums however she wanted to check first and to find out how far away I can take the tums from the pill IBRANCE so it would not interfere. As soon as I get a call back I will let you know on here! I am not surprised of the indigestion because I did get it a lot on the XELODA when I was on it.
As for the rash...Thank you I did not know about getting a rash if the WBC is low mine was just at (3.5) I forgot to mention the rash to my doctor however I will on my next visit.
Thank you for your reply I'll keep you posted when I hear back from the ong.
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For indigestion/heartburn, I use a natural product from Melaleuca called Calmicid. I get it from a neighbor (Melaleuca is a direct selling company, so it's not in stores, although you may find something similar -- I haven't looked), and it really works well. It's tablets you chew, and I actually keep a bottle by my bed in case those sorts of issues awaken me, which they have. It works really quickly and well.
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I take Ranitidine for my stomach, and the pharmacy went over all my meds before hand to see if any interacted with Ibrance and they said everything looked ok. I have a terrible stomach of too much acid (Thanks Dad for that genetic gift).
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I m on Prilosec. It's wonderful. Tried another pepcid but it wasn't as good for me I still use tums as needed. The first month was the worst.
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Thank you ladies for your advise always nice to see what others are taking or doing!
Best,
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Hello everyone!
I have spent the last week or so reading ALL of the posts on this topic and feel like I know all of you personally now! I am new to the site, and will give you a little of my story and let you know what I have experienced on the Letrozole/IBrance combo.
About a year ago, I had unusual GI symptoms, bowel issues and pelvic pain. After trips to my Primary doctor 3 times, 5 different specialists and a multitude of tests, they found nothing. As a last resort, I went to my OB-GYN and asked for a CA125 blood test to rule out Ovarian cancer. He did an ultrasound of my ovaries and found nothing wrong but did see some fluid in my pelvic area and agreed to do the test. My CA-125 came back elevated and I was sent to an OB-GYN oncologist. He performed an exam and said I had a mass in my pelvic area and scheduled me for surgery on April 7, 2016, to remove my ovaries and whatever else he found. Well, I had cancer in my fallopian tubes, omentum, on the outside of my bladder and colon and in a hernia on my diaphragm. He removed the tubes, ovaries, omentum and the places on my diaphragm and colon. They all came back as Invasive Lobular Carcinoma, NOT ovarian cancer. Further testing found a nodule in my right lung as well. Nothing was found in either breast and it is a completely different type of cancer than I had in 1998. So they are saying unknown primary.
I was sent to a Medical Oncologist after the surgery. Had they known it was not ovarian cancer I don't think they would have done the surgery. Because my fluid had cancer as well, it got trapped from the surgery and formed a 3 inch by 5 inch mass in my pelvic area.
I started on the Letrozole/IBrance combo the first of May. My CA-15 was 1968 when I started, 1511 a month later and 863 this past month! The mass I had has now almost dissolved. I just had my 3 month scans which showed stable - no better and no worse. I think this is working for me but I'm afraid to get too excited as we all know, things can change in a heartbeat.
Side effects:
Major itchy scalp when I started the first week but it resolved and hasn't come back. Sometimes my scalp hurts and I can't even wear my hair in a ponytail. I have traveling pain that I think is from the letrozole in my joints and bones, wrists, ribs, hips, back. I sometimes have BURNING like shingles pain on my right side around the hip area. It all comes and goes. I get pretty tired the third week and the first couple of days of my week off. For indigestion, I have found that eating most of my meals before 3 pm has helped and take Gelusil tablets which work immediately when the need arises. I take my meds in the morning with breakfast for that reason.
Sorry my introduction was so long but it looks as though most of you have mets to the bone and liver and I am one of a very few that has it in organs and lung. I look forward to being a part of this journey with all of you and pray for our successes along the way!!!
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Hi CS,
Good to meet you!
I've not taken Ibrance with letrazole, but do have mets in the same areas you have had them. Am dealing with ductal, not lobular mbc.
if you have more trouble with your belly, be sure to favorite this bco topic and bring us your concerns. We're a small group, but have lots of life experience learned in the school of hard knocks.
https://community.breastcancer.org/forum/8/topics/...
healing regards, Stephanie
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Thank you Stephanie!
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Starting week 3 of cycle. Energy levels are pretty good. Just went for a 90 minute hike with my kids. Leveled up in Pokemon Go! I am seeing a big difference in energy with the cycles I am on loratadine (claratin). I am taking a Sams club generic version of loratadine, so super cheap.
I get the shakey nausea thing still. Interesting idea to change letrozol to evening. Will try that.
My oncologist recommended acupuncture and evening primrose for hot flashes. She says that she will prescribe Gabapentin if acupuncture and gabapentin fail. So far, my hot flashes have been milder after a week on evening primrose. Still working up the nerve to see the acupuncturist.
Momallthetime - Once you are metastatic, you have cancer everywhere in a microscopic form: micro metastasis. These are not seen in scans. As a rule, removing metastatic solid tumors, especially if they are stable and effectively dormant, doesn't prevent the spread of cancer. There are some exceptions if you have limited metastasis and I am sure there are other cases. There is some evidence that removing the primary tumor after neoadjuvant systemic therapy prevents metastasis, if you are de novo, but the evidence is not clear. It definitely depends on the type of cancer etc.
It is still very important to remove tumors when they are strangling nerves, causing pain, threatening organ function. However, at the moment I am almost completely asymptomatic as far as cancer is concerned. This is true of many women. My symptoms come from the treatment not the cancer.
Mentally, it's hard to not get rid of the tumors. But once you are stage IV you can't just radiate all your tumors and then call yourself cancer free. We each need to find an effective systemic therapy that either gets rid of the tumors or causes them to go dormant while also treating all the micro metastasis. And since just being healthy (functional medicine) is one of the best systemic therapies, unwarranted surgery and radiation can do significant harm.
>Z<
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CS - Welcome, and so glad to hear that you are having a very positive response!
Also, here is a link to lung mets thread.
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CS- wow I find this so confusing!! Maybe I'm not understanding this correctly but your original breast cancer was IDC? No recurrence in breast but new cancer is breast ILC? I wonder if you had both ILC and IDC back when first diagnosed and it was missed? ILC is famous for going to bones. No bone mets either? Glad Ibrance is working! Did you have a second opinion? Take a peak over in bone mets thread, Deanna did a great post on why a second opinion at a dedicated breast cancer institution is warranted if you are able to go. My situation was weird too. After 18 years it came back but only to bone. Biopsy said stats changed but unless I had new primary in breast status had like a 2% chance of change. Dana Farber was right and although biopsy said no to estrogen I responded to Ibrance and Letrzole. Do they do any other markers? 27-29 Cea?
Carol
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Thank you Moissy! I will check in on there as well.
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Hi Carol,
Yes it is confusing. I am the talk around the docs lunch table! Yes, I had IDC in 1998. Yes, I now have ILC and NOT in my breasts but the pelvic/lung area with no bone mets. They did 7 biopsies of the stuff they yanked out of me and contacted the hospital where I had my lumpectomy back in 1998 and reviewed the old slides looking for something they may have missed. I had already switched hospitals when I wasn't getting any answers and am going to a top 10 Hospital and their cancer center now. Since my response is so good I can't help but think they are on the right track for treating this. I think we are proof that anything is possible on the diagnosis side, now let's hope that for our treatment!!!
Cynthia
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