Ibrance (Palbociclib)
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dlb, thanks for the links. I will keep looking for info because I would be loathe to give up my oils. I really enjoy them and I do believe they are helpful to me. Until I get some solid info, I'm mostly diffusing.
I think I will try to figure out the liver pathways angle next. And maybe contact Robert Tisserand to see if I can get a response from him specific to CDK 4/6 inhibitors, since he is the go-to person for info about oils and chemotherapy.
18 cycles? Really? Wow. That's encouraging.
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Claire - way to go. IV's are very expensive, but if there was ever a time to treat yourself to some IV's it's after radiation.
Seagan - LMWL answered your question well... and raised another line of questioning for your onc (and the second opinion I hope you get): Is your cancer growing fast or not? Your scan showed some progression but I am not sure it is a lot. Chemo is the way to go with fast growing cancer and/or high tumor load. Hormonals seem to be better when you are trying to control a slow going and/or limited cancer. In other words, whether the cancer is presenting as aggressive or drives the treatment decision. Just a string to pull when you talk to the docs...
The NIH immunotherapy group was interesting to connect with because they seemed to want to screen me early, before I needed a trial. I wouldn't hesitate to contact them even if you aren't ready to go into a clinical trial. Better to have the relationship in place BEFORE the crisis of progression.
Although I am still on my first line treatment, I am actively researching and considering clinical trials. Certainly phase III trials are of interest, especially if they allow me to pursue a standard of care option I would have done anyway. There are phase I trials that try drugs used on other types of cancer for ERPR+ MBC. The most interesting example of that is the trial at City of Hope that adds Keytruda to Ibrance and Letrozol. I wish I was closer to city of hope for sure. There are also trials in the US of treatments that have been pretty well proven outside of the US. The tumor infiltrating lymphpcyte trial is one of those. You need to have progressed on two lines of treatment to enter that NIH trial, but my understanding is that the trial is performing the best on basically healthy patients with low tumor loads. I won't be surprised if they start taking people who have had only one line of therapy soon.
Certain immunotherapies don't work on late, late stage cancer. Vaccines are another example. If there were a stemvac trial site closer to me, I would be looking at that trial closely. There are a lot of trials that are really hail mary's and I am not ready for that. But there are some key trials that will give me access to more or less proven treatment that I may want to try .... now.
Hi MJH, Judy, MedicLisa.
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Z,
The dilemma I am in right now is that at what point someone should feel safe enough to choose a trial. Suppose you are only at your second line of treatment and you see this Phase II highly promising immunotherapy trial. Now it is possible that if one just follows standard of care, that person may get 10+ years out of those. Now a Phase I or II trial although promising, comes with all the risks associated with unproven treatment with very little data to support safety. On the other hand, if one waits until most standard therapies have been exhausted, there may not be many eligible trials left. The converse is also true. With all these variables and risk / benefits in mind I am finding it very difficult to make a decision on when to actually go for a trial. Would love to know your thoughts on this.
For Phase III trials, I agree that risks are much lower.
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LMWL - Most phase I and II trials are safety and dosing trials of drugs that have never been tried in humans. I agree that people on first and second line treatments should not be looking at those trials. However, there are three classes of Phase I/II trials that look at drugs that are well tested in humans and these should be on your radar.
- Drugs that are used in clinical practice in europe but not yet approved here. Many immunotherapy treatments including some vaccines, like dendric cell vaccines or the tumor infiltrating lymphocyte trial I mentioned fall into that category. Europe is ahead of us in applying immunotherapy in clinical practice. You can go to Germany and pay $50K for these treatments or enter a phase I/II trial here and get them. Another example is mistletoe which is widely used in europe but we have only recently scrapped together private funds to do the phase I trial here.
- Drugs that have been approved for something other than MBC and are being re-purposed. These include keytruda, gedatolisib, metformin. We have early stage MBC ladies on this forum on both the keytruda plus ibrance trial and the gedatolisib plus ibrance trial. I am watching those closely.
You will be EXCLUDED from the gedatolisib trial if you had more than one line of therapy, yet it is a phase I trial. It has many sites, including UCSF.
The keytruda trial is interesting but only at city of hope.
The gedatolisib and the keytruda trials should be on the radar of anyone considering palbociclib.
- Drugs that have been previously used to treat cancer at high doses that are now being tried at low doses. We're starting to understand that drugs have different effects at different doses. It is extremely interesting. There are trials, but there are also doctors who just treat cancer with low dose chemo. Since the chemos are approved, the dosing is at the discretion of the doctor.
The biggest issue for me is that I live 2 hours from the nearest NCI center. Maintaining a healthy grounded family focused routine is the cornerstone of my cancer fighting strategy and participation in any trial will be disruptive. But if I were in California ... lots of interesting options for clinical trials now, even with early stage MBC.
>Z<
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Thanks Z for all your information and research. Kinda bummed - my CA 27/29 markers were 216 when I started 2 rounds ago and last month went down to 194. Now they went back up to 235. Shoot! My increased markers have been pretty in tune with increased activity and new sites. My MD didn't call me - he must be bummed to. I have gone to him for 10 years. Have any of you experienced the ups and downs with the combination of Ibrance/Letrozole? My next PET/CT scans are in February. Certainly there isn't any room for more lesions......Ok pity party over, need to keep moving forward and stay positive!
Jensgotthis - I also did the Diep flap reconstruction in 2007 with the belly fat. After surgery my MD said - hey did you gain some weight? I said yes, I was in Italy. He said I was able to give you a 36C. Humm....a little large for me, but must have been good for him! After 10 years, they still look great and very natural. You will like the results.
Cancer sure does suck!
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MedicLisa - letrozol and possibly A/I's generally do cause tumor markers to go up in the first few months of treatment. it's a flare reaction. it is well documented in literature. mine doubled even though my tumors shrunk. wait for scans, don't freak out. and if there is progression there are interesting options. it's good to have a plan for what you are going to do next to mitigate the freakout. the average MO doesn't want to go there, but you can. however, you may be fine.
>Z<
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Hi everyone, I've been reading but not writing here on this board (your guidance while I lurked is most appreciated), I've just started my third round of Ibrance/Letrozol on Saturday. I'd thought I was tolerating it all pretty well, but last week which was my off week, I started feeling some pain and irritation in my left armpit (never fun) and then skin sensitivity and irritation spread all down my arms and across my chest and back. Even the skin on my boobs hurt, which is crazy because it's usually completely numb. Now it feels raw all over. My doctor thinks it neuropathy and wants me to have an MRI to see if my T2 lesion is causing nerve pressure, but I'm wondering if it's just a drug side effect. Anyone experience anything like this? It seems like you guys are more knowledgeable about SEs than anyone!
Zavroka, I just saw my TMs yesterday are still creeping up a bit and it's a huge relief to read that it could be the drugs during these early days on the protocol!
Thanks!
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i stayed on my ibrance through a severe bladder infection. MO put me on Bactrim DS which has a history of causing low ANC values. So far I have not had any problems.
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jensgot this,
I struggled with extreme fatigue as well. My MO put me on 10mg of Ritalin and it has worked amazingly well. Instead of sleeping all night and half of the day I have no problems staying awake all day. I do have trouble sleeping at night but I don't believe this to be the use of Ritalin. I think its just the never ending worry and lack of activity. I live in Michigan so I am limited as far as outdoor activity during these long winters. Also, I try to avoid public places because of my fear of picking up a bug. I have not noticed any side effects from the Ritalin. I hope this helps and you get past the fatigue.
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Zavroka,
That was a very clear explanation and thanks a bunch for the same. We have appointment with Dr. Munster @ UCSF on Thursday and will have some detailed discussions there. I will update everyone shortly after.
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Thanks Z for your encouraging words. I also don't feel very well as my daughter works at a day care center and brings home all kinds of stuff from the little petri dishes that play there. My MD sent me a note today to wait until the scans as he believes in imaging before TM. If the scans are stable with no new progression, then we stay the course. If there is progression on to a new drug. I just keep remembering that my mom lived1.5 years with BC in the 70's while I have been dealing with this for 10+ years, so modern medicine is good. My Aunt had a <5% chance of survival diagnosed 3 months before me in 2006 with peritoneal cancer and she is still here! So there is always hope! Lissalou - I still haven't hit the extreme fatigue. Girlwithacurl - am on the same cycle as you and did have a rash last month on my chest but it has gone away.
I did however change taking my meds at night as those of you suggested starting last night. Only up one time with dripping sweat and hot flashes.....uuggh - hope that doesn't start again. Going to work out tonight for the first time in a long time - so will see if that helps me tonight. Take care.....
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Headlines from my MO appt today:
- His recommendation is Xeloda, 1 week on, 1 week off. Doesn't think we know enough about CDK4/6 inhibitors to know if going on another after Ibrance makes sense.
- I could also go the Afinitor-Aromasin route, but he thinks Xeloda is probably a better choice at this point.
- He was open to my trying a clinical trial and suggested perhaps one of the PI3K ones (SANDPIPER), but I had checked that earlier and I wouldn't qualify because I've been on Faslodex (with Ibrance). He's not that impressed with the immunotherapy results for BC yet. He referred me to two MN researchers for talking through other trials, though, one of whom is the head of the cancer research center at the U of MN. I'll also get a general 2nd opinion from him.
- One limiting factor is I don't yet have measurable disease, though that's something I'll be double checking with the U doc.
- He's not sure what's going on in my liver but he's seen the same kind of result with others and it turned out to be mets. I asked about a liver biopsy but he didn't think it would alter my treatment path(s). I'll get a 2nd opinion there too.
- He's not convinced about most of the functional testing places, so wouldn't recommend that. But he thinks more genetic testing might be worthwhile; I had some back in 2009 but only for BRCA 1/2 (which I tested negative for despite a heavy family history - my mom, her sister, her mother and her mom's sister all died of BC). I joke we have some wily German cancer that's keeps out-engineering things. Ha?
The upshot: I'll start on Xeloda for now, as I await my 2nd opinion appt. Then we'll see. I'm very sad about switching to chemo and fear the SEs, but am cheered by all the support and success stories with "Madame X" here on BCO. My MO guesses it'll work for me for at least a year. But we also thought I'd get way more than 8 months on Ibrance-Faslodex. *sigh*
Thanks again, friends - onward
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Seagan - rooting for you on Xeloda - please keep us posted. I had my first IV of Vitamin C today followed by a shot of B12. The nurse had a littel trouble getting a good vein as I was so dehydrated! I am planning to do this monthly for the next 5 mos (6 mos total) and see how I feel. I think its a good support for many of us on the Ibrance fatigue treadmill. Thank you Z! I go back to work tomorrow, and then head to Utah to work the Sundance film festival. Very glad to have my boosts today. LMWL - what is your wife taking now - did she change meds? Girlwithac - sorry to hear you may have neuropathy. I had an itchy armpit, but it went away after a longer time on Ibrance. Please let us know what your onc thinks.
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I believe your MO took the right decision at this point. Hopefully Xeloda will support you for a long time.
For your liver, I think if they can see measurable disease, it is a good idea to get a biopsy done. If nothing shows up on the scans, lets just wait and watch.
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hello all, had a nice day today as I did my first little painting for the class I am taking. I go into an untouchable zone of concentration with no concept of time, very centering.
Z- you continue to astound me with your depth of knowledge and the quick and thorough support you offer to everyone. Thank you for being you!
mediclisa- I just came through a tumor marker worry session. My November CA15-3 went from 387 to 485, while my CA27-29 went down. (7th cycle of Ibrance/Femara). I had a rough few days trying to get my head around progression. Then, in December, the CA15-3 went down to 200, continuing the downward trend we had been seeing. My MO says he does see them fluctuate.
girlwithacurl- I am having a lot of weird burning, stingy skin sensitivity during my week off of Ibrance this time.(8th cycle). The first cycle I also experienced chest and back pain on week off. I've had similar sensations on other weeks off, but none like the 1st and 8th. Usually, I start to feel a little funky and then I remember it's my week off. Always has gone away when Ibrance resumed.
seagan- best of luck with Xeloda. Everything I have read here confirms that it works well and for a long period of time.
lalady- hope the vitamins do the trick for you. you deserve to feel better after that nasty radiation and claustrophobic mask.
LMWL-may the force be with you two. you seem to be tackling this transition with swords drawn...
Love and hugs to everyone else, MJH
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Hello, Everyone. My onc has recommended that I move on to Faslodex. I started Ibrance + letrozole about two years ago, having no evidence of active disease after taxol, and normal CA 27.29 in the teens. About a year ago, the TMs started moving slowly up from the teens to 20s, 30s, 40s, one in the 50s. It went up and down, but the general trend was up. Now it is in the 60s. The last few PET/CTs showed nothing dramatic, just one liver area with uptake slightly above normal and a lesion that may or may not have increased in size. I also had CT with contrast, bone scan, and breast MRI recently. There is nothing to biopsy. But I agree with my onc that something must be brewing and she wants to hit it now. I told her I would like to address two pathways at once, so she will try to get afinitor approved for me based on the recent afinitor + faslodex trial results (San Antonio December 2016). I get a three-week washout period, then start faslodex. Trying to breathe and remain calm. This is the first progression/treatment change. Scared of the shots, the afinitor, and what if it doesn't work. Starting to feel a alternately numb and panicked. So there it is.
Open to advice and ideas.
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Shetland - I am so sorry that you are dealing with progression. Please accept my gentle hugs and support. Here's my perspective.
I've said before that Afinitor is not may favorite drug. I am aware of the trial, but none of the trials look at overall survival. I think the long term effects of Afinitor can outweigh the short term benefits. I wish there was great approved drug to add to faslodex but faslodex alone is a pretty good treatment.
If I really wanted to attack two pathways, I'd do the Sandpiper trial before I took Afinitor. This Phase III trial adds PI3K inhibitor to fulvestrant. It seems to have sites all over the country.
The MATCH trial is a possibility. I know they do genetic testing to match you with a treatment from their suite of treatments . I believe you can add the recommended drug to a standard of care treatment like fulvestrant. If I am right that is another way to fight the cancer with two swords, but not use afinitor. That trial is also everywhere and they have just re-opened enrollment.
One advantage to either fulvestrant alone or with a PI3K inhibitor that is you hold the afinitor in reserve. You have the option of exemestane and afinitor if the fulvestrant strategy fails. exemestane+ afinitor is a standard 3rd line treatment and if you use the afinitor now, you don't have it later. My sense is that you have a slow growing cancer and you will be strolling slowly through hormonal treatments for years. You want to plot out a long term hormonal strategy.
Always keep in mind the fourth line of hormonal treatments (see bestbird's guide) that seems to be ignored frequently.
Consider circulating tumor cell tests like Biocept. With ILC you can't biopsy. CTC may give you a better idea of what is going on. One of the oncs I see is part of the group developing the test and is very bullish on it. I have the kit sitting on my desk and I will be getting the blood draw for it as soon as I beat this strep infection.
Sorry to go full tilt wonky on you in the first day you are dealing with this but I am very concerned and it's all I can do sitting here with my computer. ((ShetlandPony)) I am available by PM for anything you need.
Seagan - Xeloda is an awesome drug and leaves you with a lot of options.
With most functional testing they try to grow the tissue before they apply the drugs but only 40% of the cells grow. So you are not testing the drugs on 60% of the cells in the dish. My MO is also frustrated with functional testing, generally. She said that she has tried to follow the results of functional tests and didn't get good results.
The functional testing that I am looking at is a little different than what my MO, and most MO's, have in mind. Rational Therapeutics, as I understand it, doesn't grow the tissue, they test directly on the sample they get. IMO, they've addressed the basic problems with functional testing. If you want to do a deep dive into their methodology, they have a good infographic. They seem to get good results. It is an option to consider.
You do need tissue for any of these tests. I am trying to get my mind around the fact that you are IDC and don't really have anything to biopsy. This is a new thing for me. Do they think you are still purely IDC? Is this ILC cancer popping up?
I'd ask your MO about circulating tumor cell tests as well, given that you have this weird new metastasis that can't be biopsied.
Lissalou - It's interesting that Ritalin helps. I've a seen a pattern of people saying that anti-depressants help with a range of side effects from these drugs, including many you wouldn't expect like hot flashes. I hate the idea of anti-depressants and I haven't gone there yet, but there is a strong basis for considering Ritalin or anti-depressants if the side effects are tough.
Lissalou, Mediclisa - Keep in mind that there is no evidence that the low neutrophils increase the rate of infection among women on ibrance. I have two kids who bring home stuff all the time. I go the gym everyday. Even worse, I visit hospitals and doctors offices. But I am not getting sick nearly as much as the rest of my family. I stay on top of any illness that does come up. I did get Strep last week, but I beat it with antibiotics in a couple days. Lookout for UTI's but that is from the letrozol. It is far more important to get yourself to the gym and enjoy the company of others.
>Z<
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Shetland, I know you're being treated at a top notch place, but I think in your situation, I would want a second opinion. I'm saying that because in spite of escalating TMs that are considerably higher than yours, my UCLA onc has told me more than once that we will only be concerned if and when my TMs double within a one month period. And I have an early stage friend whose TMs went from normal range into the 60s over a few months, and in spite of much worry, she never was dx'd with mbc. And if you take the TMs out of the picture, there's very little about your situation to support a change just yet. Not saying your onc isn't possibly brilliant to want to be ahead of the curve. But why change regimens just to be ahead of something that may not be happening? Could there be another explanation for the "slightly above normal uptake?" And what if that lesion that "may or may not have increased in size," hasn't? " I would certainly investigate the suggestions Z gave you, but I would also strongly consider getting another top onc's take on your situation. We have a lot of txs available, but at some point our options do become fewer, so I will always be in the camp of never wanting to wonder if I ditched a tx sooner than necessary.
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Deanna - Thank you.
Shetland - After re-reading your brief summary of the diagnostics supporting progression, I am not sure you have progressed either. Second opinion? Third opinion? You have time. Even the very best oncologists will have differing perspectives with ILC. As you well know it is a bear to diagnose.
>Z<
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Hi Shetland,
Without much to add, I'd like to jump in here and second both suggestions from dlb823 and Z. First, I wouldn't rush to jump to taking Faslodex alone on the basis of not-so-clear scans, at least it seems you have a bit of time to research your options. There is a lot of interest to move from AIs to PI3K and/or mTOR inhibitors (in combination with Faslodex), because these drugs have the potential to restore sensitivity of the cancer to estrogen inhibitors. Affinitor is in this same category (mTOR inhibitor), but it has some yucky side effects (not clear if the newer drugs are as bad, but because they are stronger they can be used at lower doses, and may skip some of the worst- plus Taselisib is more selective inhibitor). Affinitor is a known commodity, it works, however, if you take Affinitor, my concern would be that it could exclude you from being eligible to try any of the newer generation PI3K/mTOR inhibitors that are in clinical trials, which includes taselisib, gedatolisib, etc. A paper just came out from Genetech showing that cancer cells resistant to Femara and Taselisib combination can be effectively treated with Ibrance and Taselisib combination, so one can play off these different combinations of compounds for awhile, all the time re-sensitizing your cancer cells, ie making them estrogen-driven again so that eventually you can get back onto AIs. But one idea is that you don't want to bring in the PI3K/mTOR inhibitors until your cancer cells have become clearly resistant to Femara, so that the major population of cells would likely to be sensitive to the PI3K/MTOR drugs and you would get a strong response.
By the way, there is a very impressive bifunctional mTOR inhibitor that was reported last spring, is now licensed to a pharma company, they should be starting trials this year, this is very active area of research. Best of luck!!
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Cure-ious you are amazing. Cutting and pasting that into my files. Is that impressive bifunctional mTOR inhibitor gedatolisib or something else?
>Z<
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Zarovka, Deanna, and Cure-ious, tThank you so much for responding so soon. What would I do without you guys? I'd be crying alone instead of thinking and researching options. Please do go full tilt wonky, as Z put it.
I agree on scanning first. I will ask to move my PET/CT appointment up. If it looks worse, that could confirm the need to change treatment. Maybe there will be something to biopsy. They have no explanation for the slightly increased uptake. It is persistent over three scans, but too subtle to call. Likewise the size of the lesion is within the margin of error for CT. I have many apparently dead or dormant lesions because there were so many large ones at diagnosis. And yet, someone here said recently that her rising markers have always signaled progression before the scans. Was that lulubee? Even though it is ILC, in my case the early stage tumor and the met tumors have shown up on various kinds of imaging. My onc and a radiologist seemed to think that meant they will not be the hidden kind of ILC.
SANDPIPER is out, as is SOLAR. They require a PI3KCA mutation, but my F1 test showed PI3KC2B. (They called it a VUS, but I think it is considered significant in colon cancer, so I suspect it is in my case, too.) I was interested in the pan-class I inhibitor BKM120/buparlisib, but it was recently reported to be too toxic (suicide attempts) and will not move forward.
MATCH is out. I just looked through the list of MATCH trial mutations with my F1 report in hand. Foundation One checked for all the listed mutations (except cKIT) and none of the listed ones were found. The biopsy (from 2014) only showed CDH1 and TBX3, both typical ILC mutations, and the germline MSH6, supposedly just a bystander and not involved in the bc. Then there are nine VUS. I will ask my onc to have them re-curate to see if anything new has been learned about those.
Cure-ious, you seem to be saying that better mTor inhibitors may come along, and perhaps I should not waste my try (disqualify from a future trial) by using afinitor now. That is an important consideration. (I hope the newer ones are not all just for PI3KCA.) As you suggest, Zarovka, I could try just faslodex now and save the AA combo. Do you guys think afinitor would possibly be less effective if I start with faslodex and add afinitor later if faslodex alone is not working? I could also do the reverse and start with AA, but the idea of stopping the aromatase inhibitor letrozole and using faslodex right now is to use something that is not another aromatase inhibitor, i.e. exemestane/Aromasin. Though of course it is a different kind of aromatase inhibitor. And yes, I am scared of afinitor.
I could add a different CDK inhibitor to faslodex, in case it is only the letrozole that is failing. I think there are trials for this.
I like the Biocept idea. It might show a new actionable mutation. I assume we pay out of pocket for that?
Deanna, I think you are right about getting a second opinion at this juncture. The experience of your early stage friend is very interesting. The lack of clear scan evidence may be reason to just go with faslodex alone if I go off my current treatment. How long has your friend remained NED despite that TM scare? Does anybody know which of the NCCN centers are best, say the top five, for metastatic bc?
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What do you all think or have heard about weight lifting in addition to cardio if able? I have only found articles that it is ok with non-mets breast cancer patients. Ok, I think I overdid it at the gym with 5-10 lb. weights. Going to try to start swimming again, if I'm not to tired, but just a little to cold in MN to get in and out of the heated pool for me. Time for the pain pills and the heating pad.
Seagan - I was on Xeloda for 10 months and it was tolerable. The worst se for me was the Hand/foot Syndrome. Believe it or not, Vicks Vapor Rub worked the best for my feet, but oh the smell. Some women did not get the Hand/feet Syndrome, I hope you will be lucky. Some se were better for those when their dose was lowered. There is a good Xeloda thread with lots of savy women. Some have been on it for over 4 years. I wish you luck!
Z - I also work casual at the UofM Hospital. I have been lucky not to get sick from the patients, but something about my daughter bringing home colds. I also try to jump on the symptoms right away! She needs to get more healthy, I think.
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Lisa, you might have your daughter's vitamin D level checked (25 OH D). Here is my logic: Breast cancer patients often have low D. If yours is/was low, your daughter's might be low also. Low D can impair immunity and make it easier for a person to catch colds and flus.
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Shetland, I think you are correct. She moved in with me to help me out, but getting sick isn't helping. Time to get mine rechecked. I probably should start taking vitamins, Calcium and Vit D supplements. I see that a lot of you do and seems to be helping with symptoms
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mediclisa ~ Weight lifting is probably a no-no if you have bone mets -- unless they're extremely limited and not in any vertebrae or ribs. Swimming sounds like a much better option. So sorry you're suffering today. Hopefully, you've just created some nasty inflammation, and not done any other damage.
Shetland, I've always felt comfortable @ UCLA for several reasons, including the fact that they have separate support groups for early stage and mbc (none of which I've attended, but it tells me they have enough mbc patients to do so); they are very into integrative medicine (the main reason I chose them initially, because I knew they wouldn't poo-poo my strong beliefs in natural healing); because they're rated # 5 in the nation, I believe, and #1 in the West in cancer care in general; because Dr. Slamon is in the same office as my onc, Sara Hurvitz (how much more into mbc can you get?!). More than once, I've been fortunate to be put on now-popular regimens before they were approved (TC back in 2008 and Faslodex + Ibrance in 2015), which to me bears out their leading-edge knowledge and approach.
http://www.medscape.com/viewarticle/866909
Just wanted to add... Cure-ious, like Z, I was blown away by your grasp of new research info. You too, Z. I'm running off both your posts for future reference! You're both amazing. Thank you.
Also editing to add... Shetland, my friend was dx'd Stage II when I was in 2008. Thankfully, she's never had a recurrence in spite of occasional spikes in her TMs, as mentioned.
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Hi, Got word yesterday that I will be starting ibrance with letrozole in two weeks...just had surgery last week so they want to give me time to heal first before starting. Since my stage IV diagnosis in November I have only been on tomoxifen and xgeva.
There is so much information on this thread I am going to start at page 1 and see how I do. But just wanted to say hello I am sure I will be back for help soon!
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Shetland, you asked: "And yet, someone here said recently that her rising markers have always signaled progression before the scans. Was that lulubee?"
It was me, and I probably ought to clarify.
Tumor markers are tricky little gremlins. It's good to know what kind of gremlins you've got, because they do not behave the same way for all of us.
Because my TMs have been consistently accurate for almost a decade, we do them at every appointment. We do not scan on a schedule, though-- rather only when TMs, changes in pain, or adverse events (like pancreatitis out of the blue) raise suspicion of progression. In December, my TMs were a bit higher for the third month in a row, but they had not hit the clinical benchmark of doubling in a month, and in fact they were still within normal range. So my oncologist was not jumping to scan. However, I reminded her that any rise in my TMs is significant, so three months in a row was likely to be noteworthy. Plus, I know by now how I feel when there's active disease in my body, and that feeling was back. So she ordered the PET and sure enough, my three sweet years of NEAD had come to an end.
I have grown hesitant to mention how accurate my TMs are here on the boards. It breaks my heart when my story causes women to go into a panic when their TMs rise even slightly, because in many cases wavering markers mean exactly nothing. But in my case, you could say my "rising markers have always signaled progression before the scans"-- but that's only due to the way, in my particular case, we have always been able to use rising TMs (paired with patient instinct) as our signal to scan.
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OK, I'm looping back here to our earlier discussion above on mTOR inhibitors, and PS: I'm so glad you guys like wonky! Because I cannot let this stuff go, though I probably get overly-excited about the potential of new treatments, but anyway, here are some links:
First, the new drug was announced last June in Nature and is called RapaLink, was developed by the Shokat lab at UCSF. It is licensed to Kura Oncology (La Jolla CA), although I do not see it listed on their website either as something in their 'pipeline' or any clinical trials or FDA approval requests, so no idea what is going on with that. It is bifunctional drug, meaning that it binds mTOR at two different spots. Because of that, it can bind to either wild-type or mutant mTOR and binds at much lower levels than existing first or second generation mTOR inhibitors (first generation being Afinitor). Most interestingly, they found that a sizeable number of people already have mutations in mTOR that will prevent them from even binding or responding to the second generation mTOR inhibitors currently in development-aack! Would want to check about that before you take those drugs?
In mice the RapaLink drug works like a charm, so for example, whereas the tumors grown in the mice become resistant to Afinitor and to second generation mTOR inhibitor within three months, there was no resistance seen to RapaLink for the duration of the study, which was nine months- so, a big improvement!
Here is the story on the HHMI website: https://www.hhmi.org/news/staying-step-ahead-cance...
And another story about it from UCSF: https://www.ucsf.edu/news/2016/05/402916/hybrid-ca...
so, well, we can just keep an eye out for any trials of RapaLink..
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Tumor markers have proven to be accurate predictors of disease progression for my wife. It never doubled, only steady but slight increases, but that proved to be related to progression. Inspite of that, we have stopped doing TM monthly because her oncologist is still hesitant to take action solely based on TM. So if no action was going to be taken (and she does scans every 3 months) then why raise the stress level at each month end ? Lets just do it at every 3 month mark. That was our reasoning.
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