mets to lung
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Lnf, adding my voice of welcome, although this isn't a chorus any of us wants to be in. What you're experiencing is absolutely normal, very much a mourning period as you adjust to this new chapter. You're doing great, already on cycle 3, wow! You may have heard it, but know that Ibrance tends to work slowly. It took until my 3rd set of scans to see serious results. As to soft-tissue mets being better/worse than bone mets, there was a rip-roaring discussion on another thread about it. Bottom line, they are all bad and each has its own set of issues. Getting on a drug combo that is effective is key, and there are promising new drugs being developed all the time. Chime in and keep us updated. XO,
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singlemom1, thank you for responding to me. I was having a bit of a meltdown today and needed some reassurance. Glad to hear you are doing well. This is all so new and unbelievable for me. I keep telling myself that I feel good and not to let this get me down. Hopefully I will have a good response to the ibrance.
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Jylea, you're right I am mourning my old life. I hope that eventually I will adjust because right now I feel like I'm going crazy. It's a bit distressing to think that I'm going to have to take a lower dose of the ibrance but I've been assured that it will still be as effective. Thank you for telling me that it took three sets of scans before you saw results. I'm just hoping that I will see stable results on this first scan. At times I can forget about the lung nodes because I can't feel them and they aren't causing any breathing issues. The breast tumor is a constant reminder and there's been no change there. Thank you
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hi Lnf big huggs
it sure is scary when you have this crazy diagnosis..many good stories out there lots of good years left my dear
Dont change what you are doing enjoy the kids and family continue to plan the vacations
What we are aiming for is to be stable for as long as possible on the first therapy that we start
My oncologist said these days it is like a chronic disease such a oesto porosis wont go away BUT can be managed for
10 to 15 years as low tumour lode and only in lungs..maybe il make this time im 63
2 years later now only on letrozole ..lung mets reduced by a third scans ct every 6 months bone scans every 8 mths.
Dont know how long the leterzole wil last mayybe 2+ years but as hormone positve will be on another AI
im in In good health with excellent bone densityafter starting letrozole two years ago
letrozole has affects... my ankle which has a previious injury..changes in temp too cold too humid are the only side effects i have
Be active..all is good dont stop working see how you go
Hints
Reduce weight if needed..a must if on AI
Increase exercise walking swim yoga
Add Calcium Vit D
Watch cholesterol im on low dose already so no change
Low dose blood pressure tab...no change for me
Add magnesuim for leg cramps...for me mainly in hot humid weather
Follow Good diet and add Probiotics
All the best
Bright in hope
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Ashlyn, thank you for the positive thoughts. I hope in 6 months I can mentally be feeling better.
Bright55, thank you for the good tips. No ibrance for you?
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In 3 weeks I will celebrate my 7 yrs of mbc with bone and lung mets. The first 2 years were tough as I was treated aggressively with chemo. The last 5 I have been on anti hormonals and until 6 months ago lived a mostly normal life. I now fight osteonecrosis of the jaw and eye orbit, watch that zometa. Lung mets can be controlled, hang in there.
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Mirryp, congrats on a good long run. It's what we all hope for, all the while knowing things can change at any moment. Good reminder about the Zometa, thanks. I'm on monthly shots but believe I will go to every 3 months after 12 months of shots. Take care honey.
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mirryp thank you for sharing this with us! these are the stories that we hold onto. hope your pain is manageable with the bone issues
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mirryp, 7 years. That definitely gives me hope for a future. Thank you for sharing. Good luck with your bone issues
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Just had my first 3 month scan. I have numerous new and enlarging pulmonary nodules through out both lungs now. Newly enlarged left and right hilar lymph nodes. Also possible L4 vertebrate metastases. I was hoping for at least stable. If ibrance is not working for me, what's next chemo. So scared.
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Hi Lnf,
I'm sorry to hear that you did not receive the best news. I know this is a scary time. I am almost a year into my diagnosis, and it will get a little less scary, as times goes on.
I too have multiple bilateral lung nodules, and I had progression with my first line treatment of Tamoxifen. My oncologist switched me to Xeloda in August, and I have had 3 scans since. My first scan showed mixed results, but we stayed the course, and the last two scans were positive with overall regression. My oncologist called it a "slow but impressive response to treatment". I would ask your doctor if Xeloda is an option for you. I am finding it quite tolerable from a side effect perspective, and it seems to be doing the trick, for now anyway. I check the Xeloda thread often, and there are many members who have had success for several years, after other treatments failed. Just remember, there are a lot of treatment options available, and more and more getting approved.
All the best,
Anna
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MissMonty, may I ask how bad your progression was on your first treatment? Mine is a little good with some bad. My breast tumor is stable and unchanged and the under arm lymph nodes have shrunk. But the rest sounds like a lot of progression. So I wonder if she will want to try to stay the course. I did call the office, but she's out until the 29. They are supposed to have another doctor give me a call. I guess I just want them to give me some reassurance that this can be treated. I feel like all this waotong is just letting the cancer grow. Ive never been so scared.
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Hi Lfn,
I had a look back at my results, and my results were mixed as well. Breast tumour was unchanged, and the 2 lymph nodes had decreased slightly, but my lung nodules had increased in size and number. Described in the report, as "significant interval progression". I had only been on Tamoxifen for 2 months at this time. I have not tried Ibrance yet, as I am still pre-menopausal, so I'm not sure how long it takes to start seeing a response. You may want to pose the question on the Ibrance thread. I'm sure there will be some members who will have some feedback for you. The waiting is the hardest part, but rest assured that there are many treatment options available, and even if it ends up being chemo, it will come with side effects, but your doctors will help you manage those side effects. Your team will work with you to make the right decision based on your disease characteristics, and how you are feeling. I was given the option of Xeloda or Taxol, and after discussion with my MO, we decided that Xeloda was a good second line treatment option for me. I have continued to work full time, travel, and live my life, relatively unchanged.
I have also discussed what my next treatment option will be with my MO, as I like to maintain at least some sort of control. I've been told that Kisqali will likely be the treatment option.
I would try to get some answers prior to the 29th if you can, if only for some piece of mind. I always feel a bit better, when I know what the plan is.
Hope all goes well.
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MissMonty, I received a call back from one of the doctors I seen on two other occasions. He said there is some concern about what's going on with my lungs but not to worry because they would figure it out. I'm now waiting for a call back from the office on a appointment for another lung biopsy. Before I guess the node was only 9 mm and so there was difficulty getting a good sample. So this doctor wants to have them biopsy the same node which is now at one centimeter. He said that they would be able determine the hormone receptors on this sample and decide as to whether it's really breast cancer or possibly lung cancer.
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MissMonty, when I reread your message it about your first scan it sounds quite a bit like mine reads. No change in breast tumor underarm lymph nodes smaller but lung nodes increased in size and number. Thanks for that, it does make me feel a little better. This doctor also said that there's a possibility that I just have not been on the medication long enough for it just really start working on the lung nodes. So for the time being I'm staying on the ibrance and letrozole and just waiting for my appointment for the second lung biopsy.
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Lnf, thinking of you and hoping you get answers soon. I forgot the origins of your disease but am sure, armed with the results of a new biopsy, you will develop a good plan in place. I know of 2 instances where her2 changed from negative to positive. So now it's just a matter of defining where you are and matching the treatment to it. BTW, I had mixed results at my first scans, too, and now, after 10 cycles of Ibrance/Femara, have seen improvements across the board.
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Kaylee, by mixed results on your first scan, do you mean you had some progression and some stable? I originally had 10 to 20 nodes in my left lung. Now according this CT I have numerous new nodes in both lungs. With increase in existing nodes. Increase in hilar lymph nodes. It seems like a lot of progression. I'm hoping when I see my oncologist that she's not as concerned by the results of the CT.
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Today i got my pet/ct report please read and explain:-Follow up of numerous bilateral lung nodules found in jan 2018
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Sidd,
From what I can tell, as a complete layperson, the breast lesion has significant less uptake, so that's a good finding.
As for the lung lesions, though there is mention of a new lesion, none of the the lesions appear to be active. I don't understand the language about the partially active lesion in the posterobasal segment of the LLL.
On the whole, it looks to be a good scan with decreased activity in most areas.
What has your RO said about it?
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I am getting anxious because i got my reoprts on thursday,but the appointment is on tuesday.
i will meet with onco on tuesday and discuss.
Thanks for taking time to read and reply.
Sid-
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Hi Justagirl,
How did all this end up working? Now 5 years later from the date of you post. I too have been diagnoised with similiar grade ER/PR + Herts(neg)- have been startd on Taxol every week for 6 months. Alot of symptoms from lungs, shortness of breath upon exertion, cougjing fit now for 2 months. treatments don´t help it´s cancer in lungs. Liver and spine T11
feeling over whemled need to find someone who has made it through this.
Love, Raven
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Raven, so sorry you're going through this. It sounds like your MO has you on an aggressive plan. Obviously he/she wants to knock back your tumors in a decisive way. I had the same lung symptoms as you, SOB and constant cough, but symptoms have very much subsided with treatment. Things are very raw for you right now, and it's a process to work though emotions, life plans, and treatment plans. Things will settle down over time and you'll feel better physically as your treatment does its good work. Stay with us and we'll try to help with any questions. And of course offer unconditional support. Take care, dear.
Sid and LMF, thinking of you and hope your results are positive.
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I have a question about what symptoms everyone had prior to lung mets diagnosis. I started having extreme fatigue and shortness of breath about 3 months ago along with intermittent pain in the middle of my chest that travels to under my right shoulder blade with pain that sometimes feels like someone punched me in the ribs. The right side of my chest feels heavier than the left. EKG was normal and we tried 30 days off of tamoxifen with no improvement so am scheduled for chest CT Monday. I’m 2 1/2 years post stage 1 diagnosis. I would appreciate any input
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Hi Lousiana.Lung mets causes symptoms in some cases but in some caSes it doesnt cause symptoms.These symtoms may be of lung mets but before ct or pet it is very difficult to say.
There is only one test that is biopsy which can tell that it is mets or not.So remain possitive it could be nothing.
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Hi Loving, Sid is right, lung mets can present in many different ways. I experienced fatigue, shortness of breath, a persistent barking cough and pressure in my chest that was originally treated as allergies or asthma. When I lost 10 pounds in a month I kicked up a fuss and finally got a CT scan that showed mets in lung, bones, and lymph nodes. I am praying your symptoms lead you elsewhere. Sending you waves of support.
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Thanks all!!! Got my CT results today and all clear!!!! Still have to figure out what’s causing the chest pain and SOB for the past 3 months. Read up on costochondritis that can happen up to 3 years after finishing radiation, so may try routine anti inflammatory For a while to see if it improves? Thanks all for your support. My prayers are with you all!!
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Loving, best news of the day! Go live your life and put this worry behind you. All the best, Jaylea
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I'm off work for a week because neutrophils are at .4. So I'm unable to start cycle 5 of my 100 mg ibrance. I will continue to be off of it because on the 27th of June I'm going to go into the hospital for 2 days. I will be having a lung resection where they will remove at least two nodes. To test for the type of cancer. If it's breast cancer, to check for hormone status change. They decided that if they try to use a bronchial scope procedure on the enlarged hilar lymph nodes that they could end up with inconclusive results. I've been told that once they remove the drainage tubes from the procedure they will send me home and I will be suffering extreme fatigue for a few weeks and unable to lift more than 10 lbs for 6 weeks. Not real happy about that but at least I'll have some answers. I have a feeling my oncologist is going to take me off the ibrance and put me on a chemo.
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Aw, Lnf, sending prayers up for a successful procedure that results in a clear treatment plan. You've got a little time to prepare to lay low for a while. Fill up that freezer with healthy food to help you heal and line up your support team. Then you can rest and recover for whatever comes next. Best wishes to you, dear.
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I'm not on this thread to often but I do read it. My lung mets at DX were about 6.5 uptake at DX 18months ago, now most are between 2 and 3. Ibrance is really working for me. My MO has told me that Ibrance is the key player. I had F1 testing and have ESR1 alteration, she says that means femara is not really helpful but I still take it.
She even said I might live five or ten years if my liver mets don't come back, I had y90 for those and have had no uptake for one year. I didn't believe her at first. But, I'm beginning to understand it might be possible for me to get to NEAD. If I show as much response on my next scan, I will be close.
I don't have much trouble with my lung mets now. Except for walking up stairs and sometimes just walking, especially if it's uphill.
There is hope and I'm totally amazed. When I was first DX I thought two years would be it for me. Glad to be wrong.💞
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