? Lung Mets

[koolmom]

I could really use some encouragment from you girls. Just found out that I may have 2 lung mets. 1 6 mm and 1 7 mm. Want to know what you girls have been through, what you have tried and what worked for you. Feel desperate.

Thanks.

Koolmom (Pam)

[Mary Anne in TX]

It must be scary and a disappointment to hear this news, but you will hear from some real "masters" about lung mets. they will help to guide you through your choices and decisions. I can only send my love and prayers and most of all my belief that all will be well and that treatment will kick those crumby mets out of there! Lots of love, ma

[Believe51]

Add me to the list of prayers that you are in need of. Also, try to stay well through the winter months and away from sick people. Staying healthy while combatting these nasty lung mets helps in conquering them. This is really important Pam.

I am praying that you have no complications because I have no questions you can handle the rest. Wish I could take away that desperate feeling you have. All I can do is pray for your well-being and lack of complications, I have faith the rest will work out.

If you search this site for lung mets here you will hear from some of our Warriors and I am hoping to add you in the future. Please keep us updated Pam.

Prayers, love and cyberhugs>>Believe51

[Sherryg683]

I was diagnosed 3 years ago with 2 small lung mets, much like yours. I was stage IV from the get go. I was put on taxotere, xeloda and Herceptin..scans were done 6 weeks into treatment and there was no sign of the mets. I have been NED ever since, I did Herceptin every week for the first 2 years and switched to every 3 weeks indefinately. I am now doing scans every 6 months, in fact I go in for my scans tomorrow.I always get panicky before my scans. I know how frightened you are, when I got my results, I figured I was pretty much a goner and soon. But here I am 3 years later, feeling great. Please keep me posted in how you are doing, you are in my prayers..sherryg683

[Faith in Him]

I am sorry that you are dealing with this. Please know that I am covering you in prayer. I think I remember a few of our warriors have had success against lung mets with Navelbine.

Things will look better once you have a plan in place.

Tonya

[madubois63]

Pam - The medical field is starting to look at bc as a chronic disease (along the lines of diabetes). You do treatments until you are NED (no evidence of disease) or until the treatment stops working. Then you go on to the next treatment. That is what many of us have been doing. After 3 months of treatment, the mets to the lung were gone (took the liver a little longer). 2 years later, the mets came back to my lung, but they are small. I am being treated with Herceptin and responding very well. Almost gone!! Believe me, I do know how you feel (as do many others). Try to pick yourself up as soon as possible and don't dwell. Do what you have to do to fight this so that you can be NED again. Do not put your life on hold just because of this setback. Try to laugh as much as possible and spoil yourself too. Smell the flowers in the grocery store, play in the snow, get a manicure, eat chocolate chip cookies...what ever it takes.

[vickie h]

Pam. I know how you feel. I am praying for you and sending you much love and (I hope) encouragement. I went to a chemo appt today and have mets in my lymph nodes, large ones under my left arm and across my twice radiated chest. I go for a PET/CT next week and then on to a new treatment. The good news is, I have been doing this for 5 years (4 years longer than they thought I would be alive) and there are still many options available. Breast cancer is being treated as a chronic disease, much like rheumatoid arthritis, diabetes, and other auto-immune diseases. Please hang in there and try not to be frightened too much, cry as much as you need to, and know that all of us here love you and support you. There is treatment out there for those mets, many have been right where you are, and they are here to tell their stories. We love you very much and thousands of prayers are being said in your name. Let us know how you are.....we're not leaving you. Much love, Vickie

[SoCalGal]

Hi Pam-
I like the word "may" have. When do you find out? I also had mets to lungs - sprinkled throughout - like fairy dust but not. Anyhow - not visible and no activity on my last pet/ct!

Hope that bit of info helps and keep us updated.
xo Flori

[Yorkiegirl]

Pam sending many prayers out for you.

[koolmom]

Couldn't wait to get home to see if I had had any encouraging messages and of course I did. Thanks you guys.
'
I have an appointment Thursday to go over results. I'll know more then. Currently on Navelbine and Herceptin. I see people had a good result with Herceptin, but every time I take it my ejection fraction drops low. I was on it 2 months and they took me off for 1 month then another Muga.

It is just getting the initial news and not knowing the plan. Hopefully when I get a plan I will feel better. Thank you girls!

[SoCalGal]

What about some co-Q 10? It aids in heart health and protection. And the omega's. Just a thought. Hang in there. Flori

[ElaineM]

Keep on fighting and putting one foot in front of the other. You can do it !!

[Believe51]

It is Thursday Baby Girl. Sending prayers and positive healing thoughts your way. All day and every day. Cannot wait to get the news update. Sending you gynormous huggies too!! Talk to you when you find out the news.>>Believe51

[Mary Anne in TX]

Take the CO-Q 10! I don't know, of course, but I do believe that is why mine stayed high! ma

[koolmom]

Mary Anne
Where do I get CO-Q 10?

[koolmom]

Okay - Saw the doctor yesterday. She still did not say 100% these were lung mets (however, the report did say suspicious for metastatic disease). They are too tiny to even be seen on a PET. She is keeping me on the Navelbine and hopefully adding back the Herceptin after my MUGA next week. My tumor markers have dropped from 35 to 23 (not sure whether to have much faith in tumor markers). I know they are tiny, but in my heart and mind I feel like they weigh as much as a softball.

If I can continue on the Herceptin, I am supposed to start a trial study at UNC Chapel Hill for the bc injections. It some sort of stem cell research and it takes your own white blood cells, boosts them up to super fighting white blood cells and then gives them back to you. You have to be on Navelbine and Herceptin, however, for this study.

You women are such an inspiration.

Off the subject of cancer, how can I get my picture under my name and how can I get my bio under my signature?

[schoolteacher]

I hope you can continue on the Herceptin. This sounds like an interesting study.

Amelia

[Midwest Alice]

Hi Koolmom, I would like to know more about the study you are looking at at UNC Chapel Hill. Where can I go to find that information? Also wondering if you have to have a normal range MUGA report?

I can't remember how I got my picture on there, my daughter helped me. To put your bio on go to "user CP" on the left look for "edit signature", then at the bottom there will be a boxthat looks like this quick reply box. Type in your bio then go below that and hit "save changes".

[Mary Anne in TX]

Co-Q 10 is a supplement at all drugstores or health food store. I think you can get it at walmart also. Keep believin'....... ma

[Midwest Alice]

My MUGA has dropped from treatment also. I looked at the Co-Q at Sams. They have different grams. 100,200? I thought I would get the highest Co-Q they had. What strength do some of you take?

Thanks,

[Sherryg683]

Koolmom, if your nodules didn't show up on the PET, I wouldn't worry too much about them, I would definately follow up on them but don't jump to conclusions yet. I have had lung nodules come and go on my scans in the last few years that were not and have never amounted to anything. I have learned that it is normal to have such nodules, they can be due to environmental factors, respiratory infections, etc...not all are cancer. I think mine were work related, from breathing paint fumes for years. I have had 3 that have been there all along and have never changed. My normal radiologist that reads my scans knows this and doesn't make a big deal of it. Today I got my scans back and it was a different guy who read my scans, he noted the nodules and stated that "although they were not PET avid, they may be too small and could be metastatic, watch closely". When I questioned my oncologist about this, he told me that theses were the same nodules that I've had for 3 years that were nothing and that this was just the report of a radiologist making sure he was covering his butt from a lawsuit. If there is any doubt or any suspicions, they have to note that it may be metastatic...that's a big MAY. The two nodules that I had that did light up for cancer when I was diagnosed were very very small, they weren't much if any bigger than yours. PETS are very sensitive and can detect very small cancers. They also have a very high false positive rate and can light up for other reasons. I am still hoping that that is what happened on my original diagnosis. My mets were too small to biopsy, so we just treated them as cancer. So there is always that doubt in my mind about whether, they were actually cancer or not. Since my original diagosis, I have had 3 incidences of the PET lighting up and it being false positive, ..twice in my breast and once in my ovary. It's very scary but I have come to the conclusion that before I get back on any form of chemotherapy, I will make sure I have a biopsy, that's the only way to be absolutely sure. If you could post your history that would help, are you just beginning chemo or do you have a history of other mets....sherryg683

[DonnaD]

Koolmom,
Wishing you well with Herceptin. I have not taken CoQ10 but heard it works. Also exerise, but don't exercise a day before your muga.

I had a similar experience last year at this time. I had a CT done because of a fractured rib. It showed to small spots like yours in the lungs. After reviewing all results my onc, and rad. onc felt it was from radiation since they were in the radiated area. The CT was repeated 3 month later with nothing new. 9 months later and all is the same. I am now relaxing and feel it is from radiaiton.

Keep us informed of your progress and news about the trial you are beginning. Do you know if it is being offered anywhere else.

Donna