Ibrance (Palbociclib)
Comments
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Hi Mzmerz,
One of the most difficult aspects of coping with scan results is being at the mercy of the radiologists who read them. As Stephanie so aptly pointed out "Their styles of observation vary widely. Some note every little thing, while others yawn and miss something that can be seen on a later review." Someone else on the BCO forum has said that reading scans is more of an art form than a science (I wish I could remember who that was, especially since I keep referring to the quote). This is a common issue and we all have stories to share that mirror what you are experiencing now. I had scan results this past May where the radiologist noted: "HEPATOBILIARY: 0.5 cm segment 4/7 hypodensity suspicious for metastatic disease" that nearly knocked me off my chair. Needless to say I felt the way you do now. If you run a search for my username and the word liver you'll see my posts on the subject. Here is an excerpt that I am hoping will be along the lines of what you will hear tomorrow from your MO.
"... MO does not believe the spot on my liver is a metastasis. It is too tiny to biopsy so I can't get that peace of mind. But my MO sat down with the radiologist and looked at the scan previous to this one (where there was no mention of this spot) and found that it was there in the previous scan but was so tiny and can only be seen in a particular slice of the scan that it wasn't noted. I reiterate my concerns that we are at the mercy of the radiologists. They can look at exactly the same thing and one reports nothing and the other reports suspicion of metastasis. It is so unsettling. I trust my MO and she tells me that what she sees on my liver looks nothing like any mets she has ever seen in the liver. Since we can't biopsy it I will accept her assessment. All of my blood work is stellar. Nothing to indicate any problems with my liver..."
So fast forward to my next set of scans in Sept and the radiologist reported the following: "HEPATOBILIARY: The lesion seen in the anterior liver is less conspicuous than on the prior and possibly external to the liver and subserosal or alternatively a prominent flap of diaphragm. An alternative consideration is that this represented metastasis which is decreased in size." So as you can see - still nothing definitive in terms of a liver met. My MO maintains with great confidence that it is not a liver met. My bone mets are still stable and my blood work is great so I'm siding with my MO. However, it is sometimes unsettling to live in the shadow of uncertainty.
Good luck tomorrow and please let us know what you find out.
Hugs,
Cathy
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Mzmerz -
Hang in there, but don't stop pressing until you are completely satisfied with the answer, even if it means get a second MO or RO to review both sets of images. Be prepared for an ambiguous but truthful answer like animal crackers describes. One would like to just fall into the arms of one all knowing MO and get straight answers, but this doesn't go that way. The process of extracting actionable information out of the imperfect diagnostics we have is the hardest part.
I would only add that, in your shoes, I would pull up the two scans myself and look at them. You have a right to get the actual images. You have eyes just like the radiologist. You can ask questions about how they arrived at their conclusion. This will give you first hand a sense of what an art this is.
Hang in there. I think I said that.
>Z<
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You know, like Nine Twelve I also recently let go of keeping a secret. I told a group of people I see regularly about being on difficult drugs for cancer treatment. I did stop short of the stage iv part. At the meeting I asked for in order to talk with them, each one said something kind and supportive to me. Next time I saw them, they asked "How are you?" with more meaning. And after that it was back to normal, and I'm glad of it. I feel a bit lighter now.
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I recently did the same thing, Shetland. It was a heavy burden to carry alone. I definitely feel better for it, but I did have to 'mature' into that place, where it was the right time for it.
Stefani
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Yes, the time was not right when I was new there and I was still getting used to my new weird. But after a while, I felt the secret was a barrier between us and so did they, as it turned out.
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I feel so good reading all the responses of everyone here who is still walking. It gives me a lot of hope.
I was fine with walking until last year, when I was on Ibrance+Femara. During that time the cancer also spread to my pelvis, so my doctor had me on a daily dose of dexamethasone. I was on the steroids for a few months. Then I became dependent on it and could not stop. The steroids ate my thigh muscles, so I could not get up and set down, and could not walk.
My doctor lowered and lowered the Ibrance dose, but the walking never came back. Eventually he told me that the inability to walk was probably related to Letrozole/Femara, not the Ibrance.
SO I stopped taking Femara for a few months. Lo and behold, my ability to walk came back. I was walking over a mile and doing martial arts again. THEN my doctor said to restart Femara. I even tried to name brand hoping the side effects would be less. In less than a week, I was unable to walk more than a block, and that was limping and limping along.
Anyway, off the meds, the tumors came back in my lungs.
Right now (since Oct 6) I've been on Ibrance + Faslodex. You have no idea - I questioned and questioned my doctor and all his staff on the walking. I just have to walk. They said it should not be a problem, the way it was with the Femara. I'm so so so glad that you ladies confirmed that it is true.
Will update as (hopefully) I get better.
Sarah
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HawksfanSarah - I am so glad you shared this. It's hard to believe the letrozol can be so hard. Obviously doctors don't get it either. Seems like it should be the ibrance. But my experience with letrozol has been really hard. When I read the Femara thread, it confirms that letrozol alone can cause debilitating bone and joint pain. I have been able to yoga and walk and bike my way through. Moving through the pain is critical. But I am deeply sympathetic to those can't. I am in pretty good health and I came into this with a vigorous exercise routine. It will take very little on top of this regime to tip the balance and put me flat on my back.
Very interested in how faslodex/ibrance goes. That is what I will do if I can't keep the ibrance/letrozol going.
>Z<
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Animalcrackers- my MO said your report is only as good as the radiologist reading them. They should have two different radiologist read them
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Dianarose - I agree that there should be some protocol requiring at least two radiologists review the scans. But I'm sure that would increase costs dramatically and we all know that the bottom line wins out over what's best for the patient. I'm grateful that my oncologist questions everything and consults with other radiologists as a matter of course. She knows I'm on top of the results and she wants to be prepared to answer my questions. I've been very fortunate to have a doctor with a truly human and compassionate manner. Sadly she has moved to an inconvenient location which adds considerable stress to my schedule and I have to contemplate changing oncologists. ACK I want to stick my head in the sand and not think about it...
Cathy
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I hope you can figure out a way to stay with the doctor you like so much, AnimalCrackers. Can you take the travel time from something else? For example, work at home one day (if you are employed), or get help with housework.
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I'm glad you're able to stay active. It's important to keep going, because it makes such a difference to how the joints feel.
I personally view MOs as something like the host of "Fear Factor". You know, "Eat the cockroach, just close your eyes and swallow. I know it's still alive, but you'll barely feel it going down. Just tell yourself you have to and it'll be all good."
Mostly the MOs know the meds are intolerable, their job is to keep us on them no matter what. QOL isn't really a priority for them. And I tend to believe they have a strong conflict of interest as they make money prescribing the meds and then dealing with the side effects.
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Hi ShetlandPony - changing oncologists is upsetting and I am so conflicted about it. I haven't decided what I'm going to do yet. On the one hand, I think nothing at this point should be more important to me than what's best for my health. The inconvenience of a new location shouldn't be such a challenge that I lose a critical stabilizing part of my treatment, i.e. the oncologist that I adore. If I didn't work full time it wouldn't be an issue. However, I do currently work full time and my commute from North of Boston is a combination of car, train and walking for a total of at least 90 minutes each way. My job is conveniently located to Mass General in Boston which is where my oncologist used to be. I could just walk over for my appointments. If I go with my oncologist (who is still with MGH just in a new location), on the days I have an appointment, I'll have to add to my already long commute to travel south of Boston using the T, or a cab, or driving in that day so I can drive to the appointment (which will incur parking costs of $40 or more) thus increasing my commute time and cost (stress), increasing time away from work (stress), increasing exposure to the elements during the long winter months (stress) etc. It will also be more difficult to schedule and reschedule appointments as there will be more planning required to factor in the additional travel time. It is hard to argue that all of that added stress is good for my health vis a vis keeping my oncologist. Then again it's not added stress every day - just on the days I have an appointment. In addition my job has been incredibly supportive of my situation and has allowed me tremendous flexibility with my schedule to accommodate Dr. appointments, scans, infusion treatments etc. When I'm run down or not feeling well I can work from home. And to top it off, I've been on family medical leave from my job for the last month to care for my father during his recovery from esophageal cancer (he's doing great BTW). So I hate to have to ask for even more flexibility from them in order to keep my oncologist. Then there is the consideration that getting a new oncologist at MGH could be a good thing. Maybe he or she will bring something new to the table. Sigh.... Like I said in an earlier post ..."I just want to stick my head in the sand and not think about it..."
Cathy
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Wow, AnimalCrackers, I think I see where you're coming from. Quality of life is important and stress can't be good for us. I suppose in your situation I might ask the current onc if she would "save a place for me" for a few months while I try to find a good match closer to home. And ask her for recommendations. Maybe you would end up with a new oncologist that you also like very much. And if not, then you could consider traveling to see the old one.
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Animal Crackers - I do take stress and logistics into account when I consider treatment options. It doesn't mean you aren't doing the best for yourself if you choose to go with the closer doctor. A healthy routine of exercise and eating well is critical and takes time. Also, there has to be some balance or there is no room for life. And life is the point.
I switched doctors fairly early on to go with a more convenient oncologist to protect the time I have with my family and for my daily care. I stopped seeing a complementary oncologist who may have saved my life twice over because he is too far away.
>Z<
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Cathy, I know how it is to lose a good onc. My new one is not the greatest communicator, and I miss my old one (he moved to Utah.)
I had oncologist visits every 90 days when my cancer was stable. Now that it has progressed and I'm on a new medication, they're happening once a month. I take either a half day off work, or the whole day, depending on what time slot I get. I feel that I need to treat myself well on that day, and "well" does not mean "rushing back to the office after tx."
I also have family commitments (physically and cognitively disabled parents). It all somehow gets done. Putting in a FMLA request has given me peace of mind as far as my employment situation.
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Question regarding Ibrance. I started the ibrance at the end of this July. My tumor markets were 1330, August they were 1450, September they have skyrocketed to over 1700. I was very disappointed to see they had increased as I thought surely they were on the decline since I felt better. How long should I be patient expecting a decrease? The first 6 weeks on the ibrance I thought it was the biggest mistake ever. Nausea, horrible pain, little appetite to name a few. Within the past 3 weeks I have felt great (sort of scary). I see my onc next week and would like to have a game plan in my mind. Some research I found says 6 months, just curious as to what is true or not.
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donutswife, my TMs went up a bit the first month, but not as much as they'd been climbing prior to Ibrance. Then I had several months of downward trend/stability -- then 3 mos. of increases (which I was absolutely convinced meant progression until a scan proved otherwise), then last month (cycle #13), a huge drop. So clearly, TMs don't seem to follow a "normal" pattern when we're on Ibrance. I also don't think the SEs or degree of SEs we experience with a drug, including Ibrance, predicts effecacy. And Inflammation can also contribute to an increase in TMs. And yes, some of the original trials data details specific cases where patients did not have an observed improvement and had climbing TMs or 5 or 6 months, then suddenly their improvement was quite dramatic. Scans have always been the most reliable way to judge what's going on, and that seems even more true with Ibrance.
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Hi ladies...it has been a few months since I checked in and see that unfortunately new friends have joined the group. I pray that everyone well! I have been doing well, still working and still living in the land of NED going on 7 months now. Still dealing with the emotional ups and downs, especially as a single 37 year old with no kids, and trying to put myself back in the dating world. Very thankful to be doing well!
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I had my second scan on Monday. My oncologist called with the results last night. She says I am now in a complete remission! I am shocked, elated.... you name it. According to the report there is no visible sign of cancer on the PET scan. As we all painfully know, it is still in my body at a microscopic level, but you can't see anything on the scan! I started ibrance/letrozole 6 months ago. I will continue on this same treatment. After the new year I will have surgery as DCIS (we assume) remains in my right breast and also because there are imperfections with scans. Best we go in and clean house. I will then undergo 7 weeks of radiation when I am fully recovered. I'm not even sure how to feel - a big part of me is still making sense of my diagnosis from 6 months ago and now I'm trying to make sense of something I wasn't even sure was possible. I am grateful though. VERY VERY grateful. I hope my story gives hope to others reading this message board.
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Hi everyone, I just lost a long post, how does that happen? I had my PET/CT last Friday and it appears the cancer is stable but I have a lung infection in the area of the original tumor. I'm on an antibiotic so I hope that clears it up soon as it makes me very nauseous even with Zofran too. This is after 9 rounds, I started #10 today. I was thinking my onc might say to delay but he didn't. He wants me to stay on this as long as possible but he did say there are lots of other sister drugs in the pipeline which we know. The longest he's had someone on this is 20 months when it was first approved. He knows of no statistics to tell us about how long women starting in the trial are still on it.
animal crackers, I'm so sorry you have to think about changing oncs. But for WIW, I was very happy to be just 10 minutes away when the Dr. called to ask me to go in a day early for blood work because he wanted to see the tumors markers before my appointment yesterday. They were not elevated and have never been, even when first diagosed. So, for me, tumor markers don't appear to be a good indication one way or the other. Although, 25 years ago when I first had breast cancer, my markers were up quite a bit. So, is this good news or meaningless. who knows?
Wishing us all a good long run on Ibrance/let.
Faith (in the future)
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It's helpful to see the recent comments about tumor markers. I just finished cycle 1 of ibrance/letrozole, and my markers went up by a little more than 50%. I keep telling myself all is Ok since I just did scans and had clean results, but seeing that number on the test result just now sent a jolt of panic through me. Sigh...this likely won't get easier,but I'm grateful to be here to talk about it.
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Regarding statistics on how long people are on ibrance.... there are some still on it since the trial started - approximately 5 years. The median progression-free timeline I *believe* is 22 months, but that is a median which is VERY different from an average.
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Hey, I have a question are you still getting mammograms for some. The. Surgeon I saw today as a follow up just in case wants me to have one. I guess I am stupid, but would the Pet Scan not show any problems in the breast? I am not sure I need to be exposed to more radiation than necessary. Thankful for all your advice.0
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Hi all - will now be joining you ladies as my 18 month run on Xeloda has now ended in progression. I will start taking Ibrance & Letrozole probably next week sometime. Can a few of you tell me what your side effects are and when they started? Also, have a lot of you ladies had your hair thin or lose it completely? I'm getting family pictures on Sat, Oct 22nd, and wondering if I should wait to start this treatment until after the pictures. I don't want to be nauseous or have other issues that day. (I do realize my hair at least should be fine that day.)
Just trying to see what the common side effects are on this combination.
Thank you - praying for the best outcome for all of us!
Sheri
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Sheri, welcome to our group! Lots of great information and support here! I am on cycle 18 and have a full head of hair. I have noticed its a little thinner but completely unnoticed by anyone else. My main side effects are fatigue, muscle and joint pain. I think the fatigue is from the Ibrance and the pain is from the Letrozloe. Good luck, this has been an easy combo forms and took me to NED after 13 cycles
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eelder - yahooo! thank you for the update! i'm following your progress closely, as you know, because we were both diagnosed de novo with (somewhat) limited ERPR+ metastasis. my oncologist is not lining me up for surgery and radiation. i am trying to decide whether to push for it or not but i will certainly wait until my next scan in early december.
mdillard - so glad you are doing well and figuring out how to get on with your life. dating is a big step and shows you have a lot of faith in your future. very healthy mindset. go for it!
airlinegal - i would expect the CT's and the PET scans to replace mammograms. at a minimum you have a very good question. The bruise I got from the mammogram that originally diagnosed me with cancer 9 months ago took months to heal. Radiation aside, mammograms something I will forever avoid.
Sheri - rarely do ladies lose their hair entirely. We have a few ladies with hair thinning. It takes months to develop. I take biotin and use a special shampoo because I wanted to proactively prevent hair thinning. The result has been that I now have super thick hair Most people do fine on the hair front. For me Ibrance causes fatigue for a while, but that seems to have mostly abated. There are a whole set of side effects related to suppression of white blood cells (neutropenia) that effect whether you can stay on the drugs, but often have no symptoms.
The real hard side effects came from letrozol and hormone suppression. The transition to zero estrogen can have a whole set of side effects. Hot flashes, spaciness and lack of concentration started with the first cycle and have persisted. Then about 7 months I had debilitating muscle and joint pain. I've gotten mostly through that with exercise and some alternative therapies. That said, many people have no side effects on letrozol. It's best not to expect anything, but know that it's manageable regime for most people as far as QOL goes.
>Z<
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Lynnwood and Zarovka, thank you so much for your replies - happy to hear you are doing so well on this treatment. My hair is naturally thin, so thinning even more would not be good. I've lost my hair fully twice and not looking forward to a third, so happy for the experiences you each have had.
Zarovka, would you mind sharing the special shampoo you use? That would be so helpful!
I feel fortunate to be able to learn from all of the ladies on this thread - thank you!
Sheri
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Airlinegal, my MO told me on the first visit that there was no need for mammograms anymore and I trust his opinion.
Southern survivor, if you want to avoid the possibility of feeling bad on picture day, I would wait. I think we all react differently but I remember some nausea in the beginning and still have it on occasion, that could be the Letrozole. Fatigue is an issue for a lot of us but that doesn't kick in the first couple of days. I noticed it about a week into the meds and for several months during each cycle but now after 9 cycles, not too much. Except, right now I'm worn out with this lung infection. My hair has also thinned a lot but most people say they don't notice it. I also take 10mg. of biotin and I think it's helping.
I know exercise is important but I'm torn because I think the body needs rest to heal. Sometimes, I think grocery shopping, cooking meals and keeping the house in order is exercise enough.
Faith ( in the future)
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eelder, what absolutely fantastic news! So happyfor you!
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Monat products definitely makes thin hair fuller. It's expensive, but you don't have to use it all the time. They claim to make hair grow with some of their products I am skeptical and i don't really need it so I have not tried those products.
Worth a try if you have the cash. If not, Biotin is cheap and helps many people.
If you PM me, I can direct you to a site with a small discount on the Monat products.
>Z<
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