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My first 3 month scan

Mcap profile image
Mcap
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I just had my first three months scan, after 3 cycles of ibrance and letrozole. The scan report says that there are numerous new and enlarging pulmonary nodes throughout the lungs. Newly enlarged right and left hilar lymph nodes. Also some concern for possible metastasis on The L4 vertebrae. It appears that things are progressing fast. I am so scared. If the ibrance and letrozole don't work what's next, chemo?

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Mcap
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Jerseygirl45 profile image
Jerseygirl45

I know how you feel. Next month will be 3 months on faslodex and Ibrance. I will have pet scan and hope there is improvement from last scan. But my doctor said not to worry, it may take more than 3 months to show. So maybe it will just take a little longer on the meds to work. Try to think positive. She said we wait a few mints if tumor markers going up. And it may take more than a few months to go down. I will say a prayer for you. Just talk to your doctor. Let us know. We care!!!!!!

Mcap profile image
Mcap in reply to Jerseygirl45

Thank you. The only thing positive that I could see on the report is that my breast tumor has not changed and the lymph nodes were a little smaller. So maybe like your doctor told you I might need a little more time on the ibrance for things to start working.

Clair19 profile image
Clair19 in reply to Mcap

Hey, how did your appointment go on the 6th? Maybe I missed your post. Did you schedule a biopsy yet? Just been thinking about you! Hope your feeling better today.

Mcap profile image
Mcap in reply to Clair19

Hi Clair, I'm still on ibrance and letrozole. Dr said we will wait to see what the biopsy shows. I'm on my 7 day break from my 4th cycle. My neutrophils were at .6, not good. Hoping they come up. I will have the biopsy on the 27th. Two day hospital stay. Lung resection where they take a wedge of my lung with a few nodes. I've been told I will have extreme fatigue for a few weeks and lifting restrictions of ten pounds for 6 weeks. Not what I was expecting. I won't be able to work. But looking forward to getting some answers. How are you doing on the Verzenio?

Snowcone16 profile image
Snowcone16

I’m not sure. I am in a similar boat with a 3 month scan in July. So I don’t know if it’s worked for me yet. I’ve heard others mention Venezia. Or maybe something other than letrozole.

When is your follow up with oncologist?

Mcap profile image
Mcap in reply to Snowcone16

I see my oncologist on the 6th of June. But I think I'm going to give her a call tomorrow and see if she'll talk to me. I also am going to be in the office next Wednesday for another blood draw to make sure that I'm tolerating 100mg ibrance.

nstonerocks profile image
nstonerocks

Did you ever have IV chemo? Before the ibrance and letrozole, I had about 12 rounds of abraxane, which worked really well for me. I asked my oncologist what would happen when the ibrance and letrozole stopped working. She said there were a lot of other drugs. I know this isn't specific information, but it's what I'm hanging on to. It doesn't sound like you've had the chance to sit down with your doctor to discuss this. I hope you get to do this very soon. Having a game plan will restore your hope. I know of several women who have gone thru ups and downs and are still here 12-14 years in. I'm praying for you and the next round of meds that will give you good results.

Mcap profile image
Mcap in reply to nstonerocks

Thanks, no I was just diagnosed in early February. De novo stage 4. First treatment is ibrance and letrozole. 125mg for first 3 cycles. This fourth is 100mg because of low neutrophils. It's hard not to worry.

nstonerocks profile image
nstonerocks in reply to Mcap

It’s impossible not to worry! I was also a new stage 4 diagnosis. July 2014. I had the lump removed then did the IV chemo. It cleared up a lot of my lungs. Then letrozole and Ibrance added a year later. When is your doctor appt? There are other drugs out there. I asked my doctor why I couldn’t just stay on the Abraxane until I was clear but there are side effects. The abraxane wasn’t hard to take. Got diarrhea after treatment then was ok. This is a roller coaster ride. Hang in there. Worry but try not to panic. Let me know what’s your next step.

Mcap profile image
Mcap in reply to nstonerocks

I see my doctor on the 6th. I in the office for a blood draw to see if my neutrophils dropped like they did the last two cycles, but I am on a lower dose starting the cycle,100 mg. Trying not to panic but before this I thought I would be stable. Now I feel like nothing's for sure. I thought maybe I could get lucky and have another good 10 years but now I'm wondering if I'll be here next year.

Mcap profile image
Mcap in reply to Mcap

I think that I'm going to call my doctor today and see if she'll speak to me for a few minutes. I don't know what I'm really looking for. I guess just some reassurance and that we're going to stay on the same path or that maybe we'll try something different.

Mcap profile image
Mcap in reply to Mcap

My first visit for discussion of treatment I was asked if I wanted to do chemo then go on to hormone suppression or whether I wanted to try this new drug ibrance. The doctor sounded really up about this new drug saying they'd seen some good results. Now I'm wondering if I made the wrong choice.

nstonerocks profile image
nstonerocks in reply to Mcap

Who’s to say you still don’t have the other option? Let me know how it goes on the 6th.

Clair19 profile image
Clair19 in reply to Mcap

Hey, I did Doxil for 6 months, IV Chemo. All my lesions have been stable since last July. Don’t panic easily said I know. Right around the corner there are new drugs. In fact look up LOXO! Its company has a new pill coming out for solid tumors.Can be used for different types, solid tumors, blood cancer, breast cancer.My husband noticed it on the stock market, the company was way up, so he looked into it. They have had such good trials they are putting a rush on it. So look at there’s something right around the corner, hang in there. Doxil was not bad, in fact its a month off and did not bother my wbc or Neutrophils. I had to get a port and it was an hr to infuse. I also have Mets to rt lung so that is why I decided on IV Chemo instead of pills right off. Keep me posted, I’m on Faslodex right now and Verzenio when I get approved for Verzenio. I know you are freaking as I would too, but there is that new drug right around the corner, I feel it.

Juliandrea profile image
Juliandrea in reply to nstonerocks

Hi . Good to hear you know women who are living 12-14 years. Do you have details about their diagnosis and treatment? This will give us encouragement. Let us know thank you

nstonerocks profile image
nstonerocks in reply to Juliandrea

I do not know except that they both have at least Mets to lungs. One had a wedge resection of one lung but they found some spots elsewhere after that. Both diagnosed before Ibrance. After almost4 years I am getting to a place where I ask for more clinical detail. Honestly I have had all I could do to hold it together and go on with my life so I do not research the net or ask detailed questions. I have trusted my oncologist to do what is best for me. That might be naive but so far so good. I felt I was in good hands when she had the surgeon excuse the tumor and gave me a course of abraxane. Abraxane made a big difference in my lungs. I am a nurse, too but thankfully not an onc nurse. So sorry I cannot give details regarding these other women.

Juliandrea profile image
Juliandrea in reply to nstonerocks

So happy to hear from you . It’s ok I just thought the more good news of these success stories the better. Sounds like you are doing well and I am pleased to hear. I am newly diagnosed stage 4 on ibrance and Letrozole on second round so still learning. The internet can be depressing but this site is fantastic. I don’t ask my dr much either. It’s scary espcecially after you do all that you are suppose to with physicals and mammograms and find out you are stage 4 and no one found it. Have a great day

Julie

Jerseygirl45 profile image
Jerseygirl45

I know it stinks when you have a scan and don’t see doctor right away to explain. I said this to my doctor and she said there are no emergency’s with cancer. They read it and try to make a plan before they see the patient. But she told me I can always call her if I read a bad result in my electronic chart. So give your doctor a call so she can help you thru this. It will make you feel better. She also said I need to give new meds a chance to change things. I will be thinking of you.

nstonerocks profile image
nstonerocks in reply to Jerseygirl45

I don’t get scan results over the phone. Once the nurse practitioner told me ( on the phone) that my scan didn’t look good. I crashed and burned. When I went to see my doctor she told me the scans were basically stable. 3 spots had grown 1 mm. That’s when she added Ibrance. She said other doctors said I was stable why add Ibrance but she is very cautious and conservative. I asked her why the np and she seemed to be on different pages. The np wasn’t there the next time I went. Maybe not because of this incident but sure was a coincidence.

Mcap profile image
Mcap in reply to nstonerocks

I couldn't help myself I had to go on to my patient portal online and read my results.

Jerseygirl45 profile image
Jerseygirl45

When I was first diagnosed and started meds it took longer than three months to show improvement. I just went back and checked all of my test results. So hope for the best and give it time. This is a slow moving cancer.

Staceyness profile image
Staceyness

My doctor told me to expect a flare up the first scan. He said that cancer doesn't like being messed with so will fight back hard right away. He said the second scan should show where we really stand and that I was not to get too worried with the first one. Hard to do I know but I trust my doctor. Hang in there. 🙏🏻🙏🏻🙏🏻

Mcap profile image
Mcap in reply to Staceyness

He also said that it could be like you were saying the flare up and it's just going to take longer for the medication to start attacking the cancer. I feel like I know nothing. I feel lost and depressed. And I know I'm sounding overly dramatic right now but I feel like I'm just waiting to die. Think I'm going to go pick up that antidepressant that I've left at the pharmacy for the last 3 or 4 days. Been dragging my feet about going on antidepressant but my therapist keeps urging me to start it. I think I just need to try to accept whatever is going to happen.

Staceyness profile image
Staceyness in reply to Mcap

I get it. Totally. I now try to take it one day at a time. Hard to do and takes practice. I still work at it every single day. My prayer every morning is simple. Please Jesus...I just need Your strength for today and bright hope for tomorrow🙏🏻❤️🙏🏻❤️

Mcap profile image
Mcap in reply to Staceyness

I got a call from the oncologists office. Radiologist who did my first lung biopsy refuse to do a second on me because I had partial lung collapse. So I see my doctor's associate next Wednesday because my doctor is out of town for a couple weeks. He's going to give me a referral for someone who's going to do a different type of lung biopsy. This is what the nurse told me so I'm not really sure what the different biopsy is. I've been thinking about it and I'm willing to hang in there with the ibrance and letrozole until it's time for my next scan in the hopes that it'll start working. By the time I get the lung biopsy in the results back it'll probably be 6 weeks out from the last scan anyway.

Staceyness profile image
Staceyness in reply to Mcap

I’ve heard that you need to give these meds time to work. Hope it all goes ok. Praying👆🏻⚓️🌊🙏

nstonerocks profile image
nstonerocks in reply to Mcap

Dear Mcap

Read my first post on this board where I did wait to die when first diagnosed. Every day was leading up to the last day. I was immobilized. Keep moving. I am on a low dose antidepressant and it helps. I am no longer waiting to die 4 years later. I am living full tilt. That does not mean I am without fears or that once in a while I don’t cry especially when triggered by cancer ads or stories on tv. I keep moving. Right now I am on a silent retreat with a great Buddhist teacher. One of the ways I reboot. You will find your way to deal with this rollercoaster of a disease. Do not keep second guessing yourself or blame yourself for choices in treatment. You didn’t ask for this it was dumped on you. Sounds like you did make good decisions and will continue to do so with the help of your doctor. Talk nicely to yourself. There is no one way to treat this and there are many options. You will have a plan June 6. Meanwhile treat yourself to whatever helps to calm and center you. A massage? A nice lunch with a good friend? A long weekend somewhere where u can leave the Cancer at home? Take a deep breath and look forward not down.

Mcap profile image
Mcap in reply to nstonerocks

Thanks, I'm going to try to keep moving forward. But the fact that cancer seems to have progressed so fast and so much makes me wonder if they can slow it down and make it recede. And now that the original radiologist refuse to do a biopsy on you makes me wonder if the biopsy that my oncologist wants to do is risky.

Clair19 profile image
Clair19 in reply to Mcap

Why may I ask another lung biopsy? And what kind of breast cancer are you? The reason I ask is different Her2 cancers react differently at first to new treatments. I know you are dealing with this the best you can. Get the pills filled they will help trust me. And it’s great your working. Your stronger than you think!

Mcap profile image
Mcap in reply to nstonerocks

I'm getting up and going to work every day because I'm afraid if I stay home I won't get out of bed. But even going to works not helping a lot. I just want this just stop. I want my mind to just stop thinking about it all the time.

LadyReid profile image
LadyReid in reply to Mcap

Hello MCAP

I was on ibrance and letroloze for one year, and had goeselrin injections each month so I would be on menopause . I had to take anti-depression pills too. I did help my mood swings. At first I was against anti-depression medication. Finally gave I and took it.

After a year and two months medication was not working, now on clinics trial, new meds treatment is better, however I have minor nausea. Otherwise I’m good.

Mcap profile image
Mcap

Thanks, my doctors out of the office till the end of the month so I talked to a different doctor that has seen me in a couple of occasions. He said what's going on in the lungs is concerning but not to worry that they will figure it out. On the original biopsy they didn't get enough to do hormone receptor status. So I'm waiting for the office to call me to schedule another biopsy next week. I think he said that there could be a possibility of a different hormone status or the possibility that it's actually lung cancer.

Selmac profile image
Selmac in reply to Mcap

When I found out I was stage 4 in July 2017 I was put on ibrance, faslodex and xgeva. After 5 months the cancer had spread faster. My Oncologist said he did a gene study on me and the best thing I should be on is Affinitor and Aromasin. Been on it since February. Don't understand the gene thing and don't know if it's working.

Garnet131 profile image
Garnet131 in reply to Selmac

I attended a local MBC Symposium earlier this month. One doctor talked about genomic testing (different from genetic testing) in which your genomes give them information about what medicine(s) will work on your specific type of tumor/cancer. (Wish I could find my notes, but tired and on my way to bed--just did a brief search and didn't come up with them.) He said everyone should have the genomic testing. I saw the PA at my oncologist's office the following week and she said their office does that testing when one med fails so they know which drug to use next. Sounds like that is what your doc did. Hope this explanation helps. (That doctor was my favorite medical speaker at the symposium because I actually understood most of what he said. I'm relatively new with MBC and most of the medical speakers were way over my head.) I'll add more later if there is additional info in my notes when I find them.

Selmac profile image
Selmac in reply to Garnet131

Thank you so much. Very informative. I appreciate that.

Clair19 profile image
Clair19 in reply to Mcap

Oh ok answered my question about why biopsy. That’s very rare that it would be lung cancer. Maybe you just have a different hormone status. Good luck and keep us posted.

Snowcone16 profile image
Snowcone16

Thank you for posting the question and to all those that responded. I learned a lot from this thread as well.

HopeinNJ profile image
HopeinNJ

I think you need longer for the meds to work. Prayers for you❤️

fredmassie profile image
fredmassie

getting your emotions under control, having a positive attitude goes a long way to recovery .praying for yoy.

Mcap profile image
Mcap in reply to fredmassie

I know and I'm trying. It's been hard because from the start I've not I'd one piece of good news. Could really use some good news. I'm not crying constantly like I was before. I think I'm just starting to feel resigned to what will happen. Trying to have faith in the science of Medicine and that they'll find something that works for me.

Bluebird77 profile image
Bluebird77

I'm sorry that you are going through this very difficult time while you wait--the waiting is the worst! And the uncertainty. You are not being overly dramatic! Don't be so hard on yourself, this is a terrible, frightening disease and you are doing all you can to learn your best options and to be strong. This disease is a roller coaster ride, and I don't think we ever get used to the ups and downs. We just try to ride them out as best we can and never lose hope. I'm praying for strength and good results for you.

Mcap profile image
Mcap in reply to Bluebird77

Thank you. Have you ever heard of anyone having this much progression and staying on the same medication. I so wanted the ibrance and letrozole to work. I know some of the women who have written that with their first Scan they didn't see much happening and I was prepared to see just stable but not this much progression.

Bluebird77 profile image
Bluebird77 in reply to Mcap

Hi. I replied to you this morning but it didn't post! I'm not sure about the answer to your question but I do agree with others that three months may not be enough time to give the drugs to work. From my own experience, when I was first diagnosed with mets, I was put on Letrozole only. My oncologist told me that the cat scan after 3 months showed mixed results, some tumors had shrunk and some had grown, which he took to mean that the drug wasn't working. However the interventional radiologist I consulted with for a radioembolization procedure wanted a better look, and had me have an MRI which showed that some of the tumors were dying and the necrotic tissue made it appear as tumor growth on the cat scan. I know it's not the same situation as yours , but what I learned was that things are not always what they seem, and sometimes things aren't as bad as they look. I am fortunate to have a very caring oncologist who manages to reassure me when I'm anxious about results or symptoms. I'm sorry that your doctor is out for a couple of weeks and you have to wait to talk to him. As for the anti-depressants, pick them up if you feel you need them and maybe ask for an anti-anxiety prescription. Those medications can help a lot!

NPmary profile image
NPmary

Mcap, I'm sorry to hear about your report, there are other oral biologic agents and other drugs to suppress hormones if your Dr thinks you have to stop the Ibrance. I know how scary it is l was neutropenia all week and did nothing but sleep, eat and scans. My PET scan showed improvement l don't know about the brain MRI yet. Your doc should talk to you on the phone or and give you a sooner appt since you got this news. Take care of yourself, love and prayers, Mary.

Jan_Schnabel1 profile image
Jan_Schnabel1

Find yourself a Naturopath. Mine has been invaluable to me. I too am on Ibrance and Letrozole, for just over 18 months now, and I'm doing great. But on the days I don't take my supplements and focus on my diet...complete disaster. And go buy the book Radical Remission. You are your greatest advocate. Find anyone and anything it takes to kick your cancer's ass. You can do this...with prayer and the right tools, you can totally do this.

Mcap profile image
Mcap in reply to Jan_Schnabel1

Jan, I did see a naturopath and I am following his advice. Taking supplements such as turkey tail mushroom and astragalus root. Following a Mediterranean diet and growing my own broccoli sprouts. I have eliminated as many xenoestrogens from my life as I can. I will look into finding the book you suggested. Thanks

Clair19 profile image
Clair19 in reply to Mcap

I have been thinking about you all day and night. I’m very impressed you grow your own broccoli 🥦! It seems you are doing everything right. Never heard of turkey tail mushrooms and I watch every cooking show there is..I think when you get the biopsy they can check to see where you are at and things will improve. Remember you just found out like only 3 months. I can tell you the first 3 months are the worst, because it’s new and treatments might change. Once they figure out what kind of treatment will help most I think you will be amazed at how good you are doing. It’s up and down every day and never leaves you. So go forward and everyone’s praying for you. I put you on my Cousins pray list, he’s a preist in Virginia. I hope you feel better soon.

Mcap profile image
Mcap in reply to Clair19

Thank you Clair for your prayers. My CT scan results weren't quite what I was expecting and so I am a bit depressed. Like you said I'm sure there's going to be some ups and downs until they find the right combination of medications for me. When will you know if the verzenio and faslodex are working for you.

Clair19 profile image
Clair19 in reply to Mcap

Not sure, I started the Faslodex but not approved yet for Verzenio. The little bit of Ibrance brought my ca index down 100 points. But I had a scan in late March so I’m due in June. But that’s depends on when I get my Verzenio filled. I hope you get the answers soon and start to heal. This is all new, even to the Dr.s with all these wonderful new drugs coming out. Be as positive as you can, they will work on you. Clair

Mcap profile image
Mcap in reply to Clair19

Clair I want to be positive but right now I'm scared to death. When they do this other lung biopsy if he hormone status is different I'm afraid that my prognosis won't be very good. And doing some reading and that's what it says.

Clair19 profile image
Clair19 in reply to Mcap

I did that too started reading. Became more and more paranoid. The Dr to me would have contacted you if it was that bad. What are you reading? It’s very rare for it to change. What where you originally diagnosed with? Like I’m Her2neg. However the pathologist said she was on the fence with that, so maybe from the beginning it was all along say Her2 positive. Let me know what you are reading, one way or another you will find something that works or keeps it at bay. Let me know.

Clair19 profile image
Clair19 in reply to Mcap

I did a little reading and I think I know what you where reading. It also says a bone biopsy is more accurate than lung. I had lung also. But it says usually treatment remains the same if status changes. Yes it might be a little more aggressive but that was from one source saying that. I think you will be fine. Do you feel different or any big changes? I’m wondering if you could have shedding of tumors which will always look bad on scans. That happened to me on Chemo made markers go crazy up. Then I got pass that and went back to what for me is lower at 425. Do they do index on you? Do you know how wrong these pathologist get it wrong. One pathologist said I did not have Mets in lung... Something about the shape and size. I hope anything I’m saying helps.

Mcap profile image
Mcap in reply to Clair19

Clair, my oncologist has not done tumor markers on me. I think she's one of those that doesn't necessarily believe that they're that useful. And I started out with nodes in the left lung nothing going on in the right or the lymph nodes. Now there's progression in both areas. I'm ER PR positive her2 negative. I'm just hoping that for some reason they might need to change the hormonal treatment. That maybe I'm resistant. But because I've had some shrinkage in the underarm lymph nodes and the breast tumor has stayed the same, that may not be the case. I think that's maybe why the oncologist is wondering if the hormone status might be different in the lung. And that's probably going to mean chemo.

Clair19 profile image
Clair19 in reply to Mcap

I’m Her2 negative also, or what she was on the fence about, the pathologist. So I’m hoping I’m getting treated correctly. But since last June I have had no progression and did not start treatments until October. The reason they took so long is that the Pet scan showed in my breast, but it was scar tissue. I was hoping that was the case in my lung due to radiation on that side with previous breast cancer almost 18 years ago. So mine stayed dormant for that long and so far my liver cleared up and rt lung and spine are stable. The Chemo was not as bad as I thought, didn’t even lose hair, just sore mouth and tired. I had Doxil, so I guess it worked good. Keep me posted please... And when you have your biopsy.

Mcap profile image
Mcap in reply to Clair19

you asked how I'm feeling. Physically I feel great. I was feeling so good that I was sure I was going to have a good report. So I'm hoping they can do whatever treatment they need to do to keep these nodes from getting any larger and I can stay feeling physically good.

Clair19 profile image
Clair19 in reply to Mcap

That’s great you feel so good. With your lungs do you get short of breath? Because I do and don’t have many nodules and they are small My left lung is clear so I don’t know why? My sats stay around 98. Someone said the treatment does or my nerves are bad. So I’m glad you feel good..

Mcap profile image
Mcap in reply to Clair19

No shortness of breath at this time.

Clair19 profile image
Clair19 in reply to Mcap

Do they give you the size of your nodules? They will probably shrink when they get you on track. I just wish next time you would schedule your scan near your next appointment. Well I mean I scheduled my appointment for that reason. Because if it’s bad I don’t want to wait to long to see him. I know some Drs don’t use markers, mine are usually pretty much around what is going on. Keep me posted on your biopsy appointment. Thanks Clair

Mcap profile image
Mcap in reply to Clair19

They gave a couple examples of a couple notes in the left lung that had grown about a millimeter. My oncologist had warned me not to get concerned about that. She said the CT scan is not always exact because the way it's takes picture slices. She said they don't get worried unless the notes get really big. So I wasn't really concerned about that. It was the lymph nodes in the center of my chest being involved now and the right lung. I will see her associate tomorrow and he's going to give me the referral for the lung biopsy. I'm sure it'll be a couple weeks before I have any answers. And I thought the same thing after I made this appointment. I thought next time I'm going to do the scan days before my appointment. How are you doing any word on your approval for the verzenio?

Clair19 profile image
Clair19 in reply to Mcap

I was wondering how you are? I got approved for Verzenio. Have you had the biopsy? Just wanted to touch base with you. Thanks

Mcap profile image
Mcap in reply to Clair19

Clair, I was thinking about you and wondering how you were doing on the Verzenio. No biopsy yet. I have consultation appointment on the 7th. Hopefully it will be done the following week. I see my oncologists on the 6th. So afraid she's going to take me off the Ibrance. Hoping if she changes anything it will be the letrozole for something like the faslodex. My neutrophils are good on the 100 mg ibrance. I'm just waiting and hoping nothing grows too fast. Her associate told me that it's slow-growing and over three months I've only had a millimeter or two of growth. So I'm trying to let that fact calm me.

Clair19 profile image
Clair19 in reply to Mcap

Good to know it’s slow growing. Don’t worry about coming off the Ibrance, if it’s not working there are so many that will. I just found out yesterday I was approved after I saw my oncologist. I told him I had not been approved yet, they called after I left and said they got a email I was approved. That was strange because I had not yet sent in my paper work. I know you don’t see your oncologist till next Week. I’m sorta worried about my EOSINOPHILIA count tripled in 2 weeks. I started my Faslodex 2 weeks ago. Before I started it was 2.2. Just hope my nodules are not increasing. I think of you and pray your biopsy comes back at least the same so maybe Faslodex will work better for you. It has few side effects. Please keep me posted on your oncologist appointment. Clair ❤️

Jan_Schnabel1 profile image
Jan_Schnabel1

Also...look into the various forms of AveMar or AveUltra. It is a fermented wheat germ that has a great deal of really good research behind it and has had a lot of great results. You might also look into the surprising research behind applying Castor Oil with a drop of Vitamin A to the breasts and METS areas where you're experiencing pain. All the best to you and to all of us as we continue our battle.

_fight_ profile image
_fight_

I was on ibrance and letrozole also but had to get emergency eye surgery because of a retina detachment. After the surgery I wasn’t taking it because there was also much bleeding in the back part of my eye.

During this time the cancer mastasis to my oesophagus do I was immediately given chemo and radiation weekly for chemo and every day for radiation until the radiation damage my oesophagus. Made me couldn’t eat or swallow anything. Stopped the radiation permanently and the chemo for a week. Got to have infusion twice and new medicine to help heal the pain. Continue on chemo, now I’m taking verzenio and faslodex but two days ago I had diarrhea and vomiting as this is also side effect from the verzenio.

Eating to see my oncologist tomorrow

Mcap profile image
Mcap in reply to _fight_

Wow, you've had a rough time. Will your esophagus eventually heal from the radiation side effects? And are you saying that you're on chemo and verzenio along with the faslodex? I hope you get good results with these meds.

Tera987 profile image
Tera987

I am so sorry I was worried too; when Ibrance and letrozole stopped working for me 4 separate chemotherapy’s did not work moved into lungs and liver. CA 27/29 skyrocketed to 1115.6. I had all I could do but, deal with my 13 year old and taking many chemotherapy that did not work for me. Side effects changed my energy levels and did not have anything for anyone. Finally the 5th Chemotherapy tried worked. Eribulin/Havalene. My numbers have decreased by leaps and bounds since it works against the cancer now. Don’t give up keep trying!

Tera987 profile image
Tera987 in reply to Tera987

Not all chemotherapy levels work for each one of us. All of our cancers while similar still may be more resilient to some of these therapies. What works great for one of us may not for another. 3 months is more than enough time. I wish it could have been faster that we went through the 5 different cocktails. I really was worried but, numbers creep up while in new organs.. I am just lucky this new one is working and bringing them down and killing the cancer. I hope it works as long as it can before the cancer gets smarter. I just hope that there are many more levels of chemotherapy to keep me for my daughters graduation at 18. This is my Longterm goal. Short term is 3-5 years with Eribulin. I will see!

Mcap profile image
Mcap in reply to Tera987

Tera987, thank you for telling me your story. Sounds like you had a very hard time. How long were you on the letrozole and ibrance before it stopped working for you? I can't imagine having to go through five different chemos before you found one that worked. I would have been beyond stressed. Glad to hear things are working out for you now. I hope to be able to report to everyone in the near future that I'm having the same success.

Tera987 profile image
Tera987

Ibrance/lettozole worked for 2-3 years before cancer got smarter. It’s like penicillin and our bodies adapt and viruses strive to live in those environments. It was pretty nerve racking to start and stop 4 chemos and deal with all friggin side effects. I had no faith in the fifth one; but, it worked and fast. My counts went down more than 3/4 within 3 IVs only. Within 4 cycles it went back down under 153. I was elated, I topped out at 1115.6. I thought no hope! I was looking at everything going bad. But, this 5th one worked. So, don’t discount all the changes- it took 1-year and 6 months to find the one to work.

lashinator profile image
lashinator

Don't give up. Talk to your onc and make sure he/she know where your head is at. Take the anti anxiety drugs. I had been holding on to them and my dr said TAKE THEM. I am scared all the time, but I allow myself some down time to be sad- then I keep moving.

Had some great advice once. Set a timer for 10 min. Cry, scream, shout- whatever you need. When the bell goes off- it's over. If you need this once a day- do it. If you need it once a week- do it. Allow yourself that time.

I always find new things on this post that help and I'm so grateful for it.

Mcap profile image
Mcap in reply to lashinator

Lashinator, thanks. I'm going to start the antidepressant. I'm not crying and upset anymore I'm just kind of low I guess. I don't know how else to describe it. The waiting is the hardest part. And I'm disappointed I see so many other women report that they've had good scans and that the tumors are shrinking and it's hard not to have that.

I have had two cycles of Ibrance and each time I had to wait three weeks to restart as my neutrophils were too low. My oncologist is sending me for a ct scan next week to check my status. If there isn’t any improvement he will be switching me to chemo. He said it would be monthly chemo. We have an appt on June 5th to discuss my scan and what we will do. I have had increased pain so I’m nervous as to what my scan will show. Anti depressants will help you deal with things. Being scared is normal. I hope you have somebody close to talk to.

Mcap profile image
Mcap in reply to

Sarci, why chemo? How about one of the two new targeted therapy. I had two, two week brakes after my secon and third cycles. This fourth cycle I'm on 100mg ibrance. I see my oncologist associate this Wednesday for a referral for another lung biopsy and I'll have a blood draw to check my neutrophil levels. I see my regular oncologist on the 6th of June. After my scan showed the increased spread, I'm not sure what she'll do. I meant I would imagine it'll be determined by what the hormone status shows in my lung. If it's er-positive then maybe a different hormonal drug. If the status is changed to ER negative or her2 positive, then I might be on chemo. But I'm just guessing because I haven't talked. My breast tumor was determined to be ER ,PR positive and her2 negative.

in reply to Mcap

I live in Canada so I may not have access to the same meds as you. I am happy to say that my scan showed no new Mets and that there was some signs of improvement with my existing Mets. At least the Ibrance is working ❤️

Ps103-BTLOMS profile image
Ps103-BTLOMS

In alternative protocols I have read that slow growing cancer responds more slowly to treatment vs. aggressive cancers. This may be true with conventional ... not sure. My TMs dropped dramatically in the first months with Ibrance & Letrozole (CA25.29). Then in April only 50% and last two months about 33%. I suspect the palliative radiation I had in February had a part in the larger drops. My new oncologist says a new scan is not unless my TMs begin to rise. Not yet!!!

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