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HERCEPTIN and/or PERJETA Threads

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Comments

  • JCNC
    JCNC Member Posts: 7

    Hi scrunch,

    Reading this thread I noticed your Dx and looks like you are a year ahead of me with a similar diagnosis. How has your year been? I'm currently on weekly taxol with the H & P every 3 weeks since it's metastatic and have gone through 4 weekly treatments at this point. Does the weekly (or perhaps bi weekly?) chemo and h/p take it's toll at some particular point?

    Doctors more than likely will not do surgery since it has already spread and not sure if or when radiation comes into play.

    All the oncologist say the h & p is like magic and can really shrink tumors and keep the cancer cells in check. I know all the stats and curious how it's been for you?

    Thanks for listening.

  • scrunchthecat
    scrunchthecat Member Posts: 138

    Hi JCNC! Welcome, but sorry you're here. I am on a slightly different protocol than you - I received Taxotere, Herceptin and Perjeta every three weeks for six rounds as my first line of treatment. After six rounds, we dropped Taxotere, and now I am on Herceptin and Perjeta indefinitely. I had a large primary breast tumor (7 cm), a bunch of lymph nodes in my arm and a few small spots on my liver at initial diagnoses. At the end of my six rounds of THP, scans showed that the liver mets disappeared, the cancer in my lymph nodes was dead (completely inactive) and there was just a very low level of residual disease in my breast - just under the cutoff point of active cancer on the PET-CT SUV. My tumor markers fell from 530 to 35 and have been at 21 since the beginning of the year, which is normal. Many HER2+ hormone negative women have a very good response to THP, so feel hopeful. Our treatment is based on a clinical trial called CLEOPATRA - you can Google it for more information. It was so effective that the cancer-industrial complex made it the standard of care immediately.

    My understanding is that Taxol is a slightly less toxic/aggressive taxane compared to Taxotere. Since you are dosed every week, you are receiving a much smaller dose at any one time than I did, getting treatment once every three weeks. My guess is that your onc will switch you to just H&P after four or five months. I found the first three doses of Taxotere to be pretty manageable, but the last three were kind of rough. Still, I worked full-time throughout. If you can, plan to take it a little easier during the second half of your treatment - finish things early or postpone them until a couple of months post-Taxol. I did not have terrible, terrible side effects, but the fatigue catches up with you. I had some GERD during cycle four, took two weeks of Nexium, and then managed to keep the GERD away with diet modification (more, smaller meals of mostly bland food). I stopped Taxotere at the end of September, and it took m e a couple of months before I felt completely better. Side effects from H&P are pretty minimal - I get a little itching from time to time.

  • babyduck
    babyduck Member Posts: 32
    On hp now every three weeks, lots of chemo,,, taxon then ac,,, 2 years in now. Anybody with nausea this far into treatment?
  • dghoff
    dghoff Member Posts: 238

    JCNC, I did the weekly Taxol with the Herceptin/Perjeta every three weeks and was able to drop the weekly Taxol after 15 weeks. Now I just get Herceptin Perjeta every three weeks. The Taxol made me tired a couple days a week, but I mostly managed fine and continued to work full time. The worst side effects came in the last two weeks. I think if I had been able to stop at 12 weeks it would have been easier, but it was mostly sore fingernail beds and some neuropathy in fingers and toes. That's mostly gone away now that I'm out 9 weeks from my last Taxol. Herceptin and Perjeta has been pretty easy. Mainly I get a drippy nose!

    The good news is that it has been an extremely effective treatment. I had bones, liver, lungs, and thyroid all affected, and my tumor markers were at 850. Now they are down to 35 which is in the normal range, and my scans two months ago looked good. Hope you have similar results!

  • Almosthere
    Almosthere Member Posts: 177

    Welcome JCNC! Getting through the taxol, or for some of us the taxotere will/was the challenge. Your eyes will tear up and you will feel fatigued, but try to remember that the chemo will end and H&P really is no problem!

    Scrunch, a statin blocks an enzyme for lipid formation (given to lower cholesterol) and a beta blocker blocks B1 or B2 or both receptors against catacholamines (epinephrine, norepinephrine) given to lower blood pressure and heart rate. B1 and B2 receptors are located in the heart and blood vessels. Google "B2-AR signalling controls trastuzumab resistance-dependent pathway" Their research concluded that antitumour activities of trastuzumab maybe enhanced by blocking the B2 mediated signalling pathways. Consistent stimulation of catacholamines to these receptors caused resistance to Herceptin. So a person would need a beta blocker (metroprolol blocks B1 and B2) and continue on a statin if they had high cholesterol

  • Strong65
    Strong65 Member Posts: 36

    I haven't posted in quite a while, but have to share.... I heard THE words yesterday.... My bone scan came back showing "No Evidence of Disease" I didn't think you could get to NED with bone mets, but I guess I was wrong...

    HappyMy Oncologist said that hopefully I will dance with NED for a long time.....

    As to the person asking about the heart issues and herceptin, I am one of those affected, but I take Coreg and Lisiniprol and things are fine.

    Shutterbug, you and I headed down this path at the same time, have they checked your potassium level, I also had the leg cramps but once they started me on potassium they have gone away. I would at least increase your potassium by eating some foods rich in it and see if it helps....

  • shutterbug73
    shutterbug73 Member Posts: 284

    Hey Luv2Fish - so glad to hear your good news! May NED stay with you forever and ever!

    I don't remember if I've been checked for Potassium, but I have been checked for Magnesium and it was fine. I do eat bananas pretty regularly (although not so much lately). It could be that, although I'm leaning towards dehydration also. I'm terrible about drinking water. All things to consider! The cramps seem to come and go in spurts, and are usually in my toes.

    Hope you are celebrating your NED! :)

  • pwilmarth
    pwilmarth Member Posts: 138

    Bstein - I mentioned the two studies about the protective benefits as well as overcoming resistance when I brought this up to my MO. It was the results of these studies that made me think that I needed to advocate for a different antihypertensive drug.

    So the doctors asked the PharmD to figure out a dose for Metoprolol and there's not a neat conversion tool for them to switch from a calcium channel blocker to a beta blocker. The PharmD that I spoke to said that the usual dose from the studies was 100 mg, but there was some variation with that. She started me on 50 mg of the extended release form of Metoprolol (I was on 10 mg of Amlodopine). I know from my own clinical practice that the dose can range from as little as 6.25 mg up to 200 mg per day for blood pressure control, and in reviewing the records of some of our clients, the most common dose is 25 mg twice a day (not extended release).

    Nevertheless, I'm tracking my BP and P daily just to be sure we don't go overboard on the 50 mg dose. So far, it's been pretty tolerable (some fatigue the first few days) and my pulse has held rock steady at 60 BPM. I'll be going in for an infusion next week and a BP check with the primary care doc to make sure we have the right dose. And of course, there's nothing that says I won't eventually end up on both a calcium channel blocker and a beta blocker, since both are commonly used together to control HPT and heart failure.

    BTW, I have never had any issues with the MUGA scans. Had one today - the last one was in March and my injection fracture was 78%. The CNMT actually let me watch her do the measurements for the test which was kinda cool.

  • momallthetime
    momallthetime Member Posts: 1,375

    It's been a rough night. Yesterday we got back the Pet/CT and Brain Mri for Dani. She has had Mets to the bones but yesterday the results came back, according to this Radiologist there is one spot in the liver 1.5cm, also the mesenteric thingy that has been growing on the left side of the abdomen, is getting bigger every time we do the scans. Some lesions on the skull got a few mms bigger. And the whole skeleton is still acting up, but not really getting bigger just not really smaller. So they call that part stable, so he thinks some of the stuff she is taking is working. Hmmm hard to think.

    Ladies, I will be speaking to doc in the morning, If you see this, what's your opinion on "one small lesion", does it make a difference if it's small, or once it invaded the liver it's a different "monster". Doc told me last nt, oh, it's so small, maybe they will just radiate it. But should a biopsy be done? I really don't know how I am going to tell her, she deals with what she has to, but she was so hopeful. She does not want the details. In her everyday life she is a force to reckon with, but this is just too hard (that's where I come in, she relies on me, looking out for her, doing research and getting her to a good place).

    The last PET/CT was done only 8 wks ago, so it was not there before?

    The lesions on the skull, were supposedly stable after some Gammaknife, but now it started growing again. Yes, not by much, but growing. He is considering Proton therapy for this. (to some of them)

    She is now on Ibrance/Letrozole, Tykerb/Herceptin. Perjeta was not approved this time because they said she was on it already, I asked the doc to try again, he said it would not make much difference, bcs she is on the other stuff, does it make sense?? ER+PR+(less than 1%), and HER2+ (FISH +++) Her status of HER2 changed from the original HER2- to HER2+ on biopsy a year ago. Could it have changed again??

    Maybe he is thinking of adding Immunotherapy to it.

    She has been on everything already, besides some very new ones. WHAT is going on?? She will be devastated, I really don't know how to tell her.

    So much has happened in our lives and I see from just a bit in yours. I was really trying to get as much info as possible on the new tx she is on, it's been a race for knowledge. I am substituting in a Kindergarten, my time very limited. When I get home in the late PM, i can't think. I really think all this has affected my brain, seriously. I cannot remember the simplest things. Also dealing, with close checkups for other daughter with "suspicious" stuff, (which we found since she started going for baseline, INSANE). I really want to take some time off to go thru all the threads, and be in touch and learn. I must. Maybe in the weekend.

    Enormous hugs to all. I miss you.


  • pwilmarth
    pwilmarth Member Posts: 138

    MOMALLTHETIME

    I feel for you. It sounds like you are on information overload, trying to make sense out of all the things the doctor is telling you. If you stop and think about things, how many people with diseases of the liver (not cancer) get scans every 8 weeks? So things can look different but that doesn't mean bad. Just different.

    My first PET scan was about 5 weeks after my mastectomy. Then I had another one about 8 weeks later. Much of what the radiologist saw was obscured and cloudy because of all the inflammation in my chest from the surgery. I know that they were seeing a lot of activity in my bone marrow because they talked about normal stimulation of my bone marrow due to the effects of chemotherapy which was important to note because of the issues around bone mets.

    Recently the TV news show 60 minutes did a story on a new treatment for brain cancer. It is out of Duke University and it involves using genetically altered polio viruses to stimulate the immune system to kill cancer cells. It was proving to be extremely effective, but it also meant that the oncologists were seeing some radical changes on the frequent brain scans they were doing. And the doctors were still trying to figure out what all of the changes meant. One thing was certain - they were seeing a lot of inflammation, which was caused by the polio virus.

    None of us can read the report and know what specifically your daughter's scans are saying. With such frequent scans, all we know for sure is that your oncology team is micro-managing the disease. That's both a good thing and a bad thing. The good thing is that they are trying to keep the disease under control. The bad news is these frequent scans are causing you a lot of stress and anxiety because you don't know what it means in the long-term.

    My initial PET scan showed two very small lesions on my liver. Millimeter in size. I was recovering from surgery, and I was feeling no ill effects from these two tiny lesions. Prior to my surgery, I was doing poorly, I slept all the time and I had no energy. Once the tumor was removed, my energy rebounded dramatically. Those two tiny spots weren't doing anything to diminish my quality of life.

    So let's take a second here to think about how big 1.5 cm is. That's less than an inch. A normal human liver in a female is about 14 cm in diameter (roughly 5.5 inches). Sometimes, the doctors find many of these lesions on a cancerous liver. But they still treat because they feel they can stop the growth of new tumors. And the tumor that is there will eventually die (all cells have a predetermined life span). So the real question is: does the doctor think that the cancer has stopped. If so, then that tumor will eventually die. And it can also be forced to die with radiation therapy,

    The liver has the ability to regenerate and heal itself. So, if the cancer can be stopped or controlled, then the liver can actually recover.

    In my case, those two tiny spots were gone within 6 weeks of starting THP. Radiation therapy wasn't necessary for the liver. We radiated the chest wall (primary tumor site) and the lymph nodes.

    Your daughter's case is much more complicated but the idea is the same. Do what we can to eliminate this spot and do what we can to keep the disease in check. And then let the liver recover.

    When I think about the liver, I think about the damage that people do to this organ with chronic alcohol abuse. And yet, physician's don't do scans every 8 weeks to monitor the disease. But that is what cancer docs do. It helps them see if what they are doing is working - and at an early enough stage to prevent the damage from becoming irreparable or out of control.

    What I hear when I read your post is that you are experiencing a lot of emotional distress with every PET scan. This disease is so hard on the families. You don't know what it means and you are worried that she's going to die. It sounds like you need an outlet to express these worries. Feel free to come here and vent. But also try to pull back and look at the big picture. How does your daughter feel? What is her quality of life? Are both of you doing things every day to increase your joy? Has she expressed that she is tired of fighting the disease? Or does she still find her life meaningful and pleasurable?

    I've worked with end-of-life care and when it's time and she's ready, she will tell you that it's time to stop. Until then, find ways to increase your peace and joy every day. Put the PET scans away and look for all the tiny little blessings that make life glorious.

  • Andi67
    Andi67 Member Posts: 314

    Momallthetime... I just wanted to add my two cents. My Her2 status also changed from negative when I was originally diagnosed in 2009 to positive when I was re-diagnosed Stage IV in 2012. (sometimes I wonder if they misdiagnosed me in the first place) I am also ER+ PR+ (less than 1%) My cancer went to bones and I also had TWO small spots on my liver. I went through chemo and radiation - but to my bones only (to my back) and am now on Herceptin ONLY every three weeks. I am not getting Perjeta for the time being because of the side effects.  I was diagnosed almost four years ago, and everything has been stable for about three years... the lesions in my liver are still there, but did shrink at first, and haven't grown at all/progressed/etc. Most of the time, I feel great.... quality of life ALMOST back to normal.

    I hope that helps. We all know how completely overwhelming and confusing all of the information is.... I hope it settles down a little for you soon. Thinking of you!

    XO

    Andrea

  • juli24
    juli24 Member Posts: 80

    just wanted to chime in here that I started out with a negative HER2. Got a second from a different hospital panel & it was totally positive. So glad I asked for it to be re checked

  • Bliss58
    Bliss58 Member Posts: 938

    Haven't posted much here, but I've been reading and catching up on the last two pages. I ended TCHP October 22, 2015 and have been on Herceptin only since then with my last treatment scheduled for July 1. I'm triple positive and my onc basically said standard of care was to be on Herceptin for a year, so I'm interested in reading that so many others have been or are on it for much longer. I think I should now ask about staying on it longer or clarify why not. Major SEs for me were over within 3-4 weeks, but It did take at least 7 months for my bowels to return to normal. I do still have residual neuropathy in my fingers and toes and want to try acupuncture for that, but still haven't gotten around to it. I just finished 5 weeks of radiation and seemed to really have a runny nose throughout that treatment and hadn't linked it to Herceptin, but maybe that's it, otherwise, I don't notice SEs from Herceptin alone. Interesting discussion about beta blockers, too. Something else for me to ask about. I take an ACE inhibitor and diuretic for hypertension and also take CoQ10. So, far my scans have been good with no decrease in function. I have another echo June 24 and assume I'll have at least one more in September.

  • txmom
    txmom Member Posts: 221

    Me too.  I started out HER2- and had my tissue sample retested at a MD Anderson and it came back HER2+.  Totally changed my course of treatment which I had already been on for a month.  My MO said some labs do not have advanced technology.

  • Almosthere
    Almosthere Member Posts: 177

    Bjsmiller I would question your MO because Herceptin is stopped after about 17-18 treatments for stage 1-3 but for stage 4 HER2+ it's given for life (often with Perjeta now) or until it stops working. Not sure where your mets are but I hope to be on HP for 30+ years or until they invent something else!

  • momallthetime
    momallthetime Member Posts: 1,375

    Hey pillwimarth Gosh did I miss you!!! I was truly overwhelmed by the news. And I have been trying to do a lot of learning. Mom had liver mets, but when it was discovered the whole damn thing was lit up like a Christmas tree. She was a wonderful lady, a true Heroine, fought a good fight, she suffered but did not give into this monster till a few hrs before she died. And yes, I know this here is much different.

    Love what you wrote, I'm gonna read and reread. All true, BUT just quickly, they do need to know if the tx is working. And yes, I am very scared. Too many ppl as of all you know get taken by this beast. I do always try to see if we could minimize the damage and act before it catches us. All these things in the skul, we are trying to avoid it should not enter the brain base. Bcs it gets so much harder to fight it. The same with the liver, yes, you are right, they are small, in the scheme of things but they do proliferate like yeast gone wrong, so I am trying to hold off!

    How could a doctor know if the tumor has stopped? Her TM's are not true to whatever is going on in her body. BTW, she already was on the combo THP, last year. Did her NO good at all. She showed twice in diff biopsies that she is HER2+ now BUT none of these wonderful new tx for HER2+ has worked with her.

    She feels fine, and wants to live and be around specially for her 2 little kids. Her whole life revolves around them. Most of the day believe it or not, we find laughter in the stupidest things, she helps people that need carpool with the kids(bcs they are sick), she really tries to live a normal life. She def has plenty of spunk to kick this monster's butt. You know, no one aside from her sibs and close doc friend, know about her status, she does not want pity party, actually tomorrow we are planning a fun day with the kids, BUT I do worry. Really it's my nature. But no one knows looking at us, I don't wear my fear on the outside. Thank you so much for your caring.

    Andrea thx so much, yes the path is very similar. Can I ask you why did you not radiate these 2 spots? We are seriously considering it. And you see, she hasn't had a clean scan in yrs, there is something going on all the time, we don't even know what "normal" is anymore. It's good to know that you are on Herc only. Hope you continue stable!!

    JHarris thx for the info, yep we did have it rechecked.

    Bstein 30+ !!!

    We sent out all documentation to different doctors for a 2nd and 3rd opinion and now waiting back. Onco called today, still unsure about doing biopsy or not on the liver, Dani had a blood biopsy done with Guardant360 back in January and NOW he says he looked it over and sees that "the tumor" has a BRCA2 mutation. Hmmm what does that mean? I know she is BRACA1/2 negative, he said it has nothing to do with that, it's the TUMOR that has the mutation NOT her. Ever heard of such a thing?? What is he talking about?? Not her, but the tumor has it. English, please!

    And b/c of that he feels the Lynparza would work.(an ovarian cancer drug) with immunotherapy and keep Ibrance and Letrozole and Herceptin. The Letrozole he wanted to change, but when I asked why he did not really know and it seems he will keep it for now. He does not look overly concerned about TWO spots in the liver, but we are, she did not have this 8 wks ago, and after a few years with bone mets, a new beast appears and she hasmets to a major organ. I don't get his "not so worry" tune. These things have a tendency to multiply, that's for sure! He thinks tx will take care of it.

    You see what I am talking about, it's one craziness after another, you can't make this stuff up. But Would love to hear if someone knows of such a thing about what he said, gonna try different threads also, hope someone makes sense of this. We did not even do liver biopsy yet or finalized the decision. I did tell him, first she is going for the Herc infusion this week, and then we'll decide about the rest, the thing about the tumor's mutation(that he just discovered now, after I pressured him to ask a colleague what he thinks about this picture) is making me dizzy. (anyway HOW COME he did not see this 6 mos ago!) I am not happy!

    Warm hugs to the best ppl!!

    P.S. I asked him how about checking AR? Yeah, he said, it's a consideration. Now what??

  • pwilmarth
    pwilmarth Member Posts: 138

    MomAllTheTime

    One of my hobbies is cooking. I love to watch cooking shows and cooking competition shows. I don't consider myself a serious cook, but I'm always fascinated by the creative minds of chefs. How do they know to do what they do? There's a show on PBS called The Mind Of A Chef. When a chef creates a dish, it's the culmination of years of experience working with different ingredients and figuring out how to put them together to create a successful dish.

    From time to time I watch some of the discussions on OncLive. Not that I'm that interested in becoming an expert in oncology, just that I try to understand how oncologists think. You will see them have detailed discussions about some of their more complex cases. You might call these discussions The Mind Of An Oncologist. What I've learned from watching their discussions is that sometimes the treatment we get is like opening a cookbook and reading a recipe. There are always new recipes being added to the cookbook.

    For example, in 2014, the recipe that was added to their cookbook was Taxotere, Herceptin, and Perjeta for the first line treatment of metatstatic HER2+ breast cancer. For someone who's never been treated for breast cancer, that's an easy recipe to pull out of the cookbook.

    They still have access to the old recipes. And many of the oncologists know from experience what works and what doesn't work after someone progresses on a specific treatment. If you tried that before, you have try something in a different class of drugs. Or you can go back and use it again if there was something else in between. For an outsider who isn't used to their jargon, the discussions can get quite complex. But they understand each other.

    There was a discussion on OncLive about triple positive breast cancer. When there's progression, the recipes get complex. And they are constantly being given new ingredients to add to their cookbook. Amongst themselves, the discussions are about the experiences they have had with different treatments. We don't have their years of experience and what they've seen before. No two oncologists are going to have the same clinical experiences. But they will formulate ideas about what to do based on past experiences. So it's always good when two or three of them get together and discuss what they think will work. It's the teaching hospital philosophy.

    So there's terms they use like Progression-Free Survival, Overall Survival, Objective Response Rate, Complete Response, Partial Response, Treatment Failure and our favorite: No Evidence of Disease.

    Next time, ask your oncologist which one he thinks your daughter is at. If they aren't stopping the treatment, then she' s not at treatment failure.

    As far as the spots on the liver, no they shouldn't be there but that doesn't mean they aren't stable. It just means the oncologist needs to monitor and take another snapshot of them in a few weeks to see what they are doing. Then he'll pull out his toolbox and decide which tool should be applied. Maybe it's a trip to the radiation oncologist and maybe it's just letting it sit there.

    OH, and the comment regarding mutations was hilarious. Remember, you are speaking to a doctor. Doctor's always speak from the medical model framework. The medical model says that your body is a machine with parts that can or can't be fixed. So he's always talking about the parts he's been trained to fix. He's never speaking about your daughter as a total person. So from that viewpoint, yes it's the tumor that has mutated, not your daughter, even though the tumor was created by her own cells.

  • momallthetime
    momallthetime Member Posts: 1,375

    Hey you sure made me hungry. I need a good Chef! In need of the right recipe!

    http://www.forbes.com/sites/elaineschattner/2015/0...

    this is one of the links that was sent to me bu the wonderul ladies in BC.org. It actually seems interesting, but Onco's delivery is screwed up. I have to read yours and their input, and then try to keep it in my head. Still waiting for 2nd/3rd opinion doc to tell us when we could come, they are reviewing the file!''

    Thank you so much for your help,


  • pwilmarth
    pwilmarth Member Posts: 138

    And on OncLive, they have a discussion on PARP inhibitors and BRCA mutations:

    PARP inhibitors

    They are talking about Triple negative breast cancers, but the key is the BRCA mutation.

  • pwilmarth
    pwilmarth Member Posts: 138

    bjsmiller - There was a study published in 2015 that indicates that an ACE inhibitor also offers protection from LVEF declines. So you're on the right treatment

  • Andi67
    Andi67 Member Posts: 314

    Momallthetime - I might sound naïve, or maybe you will understand because of your experience with doctors, but I have no idea at this point why they didn't radiate the spots on my liver. I don't even remember them talking about it. I was in such crisis mode when they discovered my Stage IV; I literally had compressions up and down my spine and was close to never walking again. ( I just ran a half marathon in May!) I do remember that my oncologist (this was a different oncologist than I have now. I was at Cancer Treatment Center of America for a while) said he might be able to surgically excise/remove the spots on my liver, but then he decided that my Bone Mets were so bad that it wouldnt' be worth it. And then the treatment shrunk them, and they havent' budged since, so current oncologist hasn't brought it up again.  I'm sorry I am not more helpful!

    XOXO

    Andrea

  • Bliss58
    Bliss58 Member Posts: 938

    Thanks bstein and pwilmarth for your replies and filling me in. I'm NED as of my last scan in March and I hope that'll be the case for a long while, but I'm making a list of questions for the MO next week.

  • pwilmarth
    pwilmarth Member Posts: 138

    Andi67 -

    The choice to radiate isn't always about eradicating the tumors. Sometimes it's for symptom management. Yes, you may have tumors on your liver, but they may not be causing you any problems. If you are symptom free, then they can work at controlling the tumors with drugs. With all of the new drugs they are using, sometimes the goal is stop progression and sometimes it's a pathological complete response. If you see shrinking tumors, then you know that progression has stopped and we're on the road to recovery. When I first started reading this thread, I remember reading the story of one woman who had many spots. H&P caused those spots to shrink, and over the course of 22 or 23 months, they eventually disappeared.

    The use of drugs isn't going to produce the rapid response you see from surgery or radiation therapy, but over the course of time, the outcome can be just as good.

  • Almosthere
    Almosthere Member Posts: 177

    Thank you pwilmarth! Your post gave me comfort! Thanks for putting things in perspective. Having cancer seems like a test of patience. Waiting for hair to be "long enough," eyelashes to grow in, breast reconstruction to feel normal, scan to show no disease... All the while trying to live a happy "normal life.

  • josalive
    josalive Member Posts: 53

    Well ladies... my insurance finally approved a PET scan and I got the results today. I am officially NED. It's been about 18 months since my de novo stage IV diagnosis when my doctor told me I had 14 months to live. Chemo, radiation, lumpectomy, and liver RFA later and there is no sign of cancer. Thank God for H&P... the miracle drugs.

  • Bluefrog76
    Bluefrog76 Member Posts: 250

    Josalive: what amazing news. So happy for what's possible.

  • shutterbug73
    shutterbug73 Member Posts: 284

    That's wonderful news Josalive!

  • scrunchthecat
    scrunchthecat Member Posts: 138

    Congrats, Josalive! We were diagnosed about the same time with about the same diagnoses. I did not have RFA or surgery, but I am NEAD (No Evidence of Active Disease), and my tumor markers just came back normal again.

  • dghoff
    dghoff Member Posts: 238

    Josalive! I am so happy to hear your NED news! That is wonderful!!

    I just got CT and bone scan results a week ago, and while I still show numerous spots in lungs and liver and a couple of bones, a few have disappeared completely and everything continues to shrink or is stable. I had hopes there wouldn't be any sign since my tumor markers have fallen into normal territory (22 for the CA27.29 marker), but I guess bstein, you are right that it is a game of patience. We want things to happen right away! I'm on just the Hercpetin/Perjeta now and trying to live life as normally as I can and taking heart from all of your posts that it may take awhile, but I could still, maybe have that dance with NED. I guess I just need to be happy that I feel good and strong. In the end that's really all that matters, right?

  • josalive
    josalive Member Posts: 53

    DG - I think your results are good. I did not have an immediate complete response to treatment and after 12 weeks of chemo I still had evidence of disease. But it sounds like things are getting better for you so hang in there and stay positive. It can happen and stable and improving is a great place to be.

    Scrunch - glad to hear your great results as well!

    Living from scan to scan is really not fun but my onc is giving me a 6 month break this time so I'm looking forward to having a break and just focusing on living life for a while.

    Best wishes to everyone!!!!!!