Uterine cancer metastasized to lung - looking for others to talk to with similar condition

nancygt said:

join in
My cancer also is in my lungs-this third recuurence and others involved lymph nodes so I am conerned. I had carboplatin/taxol first year (2009)and CA 125 went way down but 5 months later I had recurrence. This time my doc consulted Moffitt and MD Anderson and they recommended Cisplatin and Doxirubicin-I did 6 treatments. CA 125 came way down and tumors shrunk 30% which my doc thought was great-all I could think of was that they counted 20 tumors and 70% of those were still there. Now again 5 months out from chemo and they are growing again and are in all 4 lobes, not just bottom of lungs, although no symptoms.We did PET scan last week, he put me on Tamoxifen hoping to **** growth and we will disucss game plan in a few weeks with PET in hand. He said there with several other drugs to try-Ifosfamide(probably with Paclitaxel), Topotecan and Avastin.
Does this mean that cancer has spread through bloodstream as opposed to lymphatic system and that recurrence is considered distant metastasis as opposed to local ? I must admit I am depressed and panicked and even though I like and trust my doctor, I wonder if is time to get consultation at MD Anderson again.I know this cancer for me is not curable, only treatable and he told me the tumors would not be completely gone after last chemo (NED twice before was not meaningful anyway) and I am scared this is the beginning of the end and wonder if he will tell me that. Linda P and I were on almost exactly parallel schedules and it has shaken me that I found about the new growth on the day she died-I am not usually this panicky but I am having hard time emotionally this go round.
Sorry to go on so long but some times it just helps to vnt or exp0ress our fears.
I wonder if it is worthwhile to do carbo/Taxol again as it came back so quickly before-has anyone had that rteatment for recurrence in lungs that has been lonlasting.

nancygt said:

UPSC/Lungs
Yes it is USPC. After my post, I got up nerve to call my onc's nurse and cajole her into sliding me in next week rather than Dec.20 - that wait felt like agony. I know they have PET scan results and I can ask him more questions and perhaps discuss the second opinion. I went to MD Anderson just under 2 years ago for that purpose and if you see them every 2 years, thy will keep active patient file.Also I intend to ask him about the info G.D.Pawel posted recently on the doctor in calif. that is about to patent a more powerful assay test that includes Avastin.
I am not PR + but my doc cited the same studies Linda P had mentioned that they were seeing 20%+ effectiveness with non PR +-(as good as most 2nd and 3rd line chemos), Maybe if we see it is not growing fast, I can give it 90 days even if it is only "holding pattern" expectation.It is so hard to decide how long to wait (or should I say gamble) between jumping back on chemo or giving both your body and psyche a few more months of respite.
I appreciate your responses - beautiful sunny day and I took a bunch of winter clothes to a charity looking for them, signed up to drive another patient in American Cancer Road to recovery program, and then treated myself to a new smartphone(like a grown up Xmas toy) and enjoyed a big Greek lunch.Amazing what a good day and the ladies on this website can do to keep you going. Still some fear and trepidation but at least they are not ovewhelming everything else right now.

nancygt said:

mets to lung
Good to know the tamoxifen is keeping it stable for you as Iam also ER and PR negative.
I wondered if it made sense not to jump back into chemo but stay on tamoxifen and your success combined with earlier postings from Linda P. is encouraging. Good luck on upcoming check up amd keep us posted.

HellieC said:

So sorry for recurrence in lungs
I was so sorry to read that you have a third recurrence and it is in your lungs. It does sound as if it may be a good time to get a second opinion. Not because there is anything wrong with the treatment options suggested by your medical team but more to get another perspective on it. I am in the UK, so I don't know the "form" in the US but I am sure that other ladies on this board could recommend or help you find the best place for the second opinion.
I'm not sure what type of cancer you have (adeno, UPSC, MMMT etc), but my oncologist seems to go by the "6 month rule" with the carbo/taxol combo. She reckons if you get 6 months or more response with it then you can be classed as "platinum sensitive" and have it again, but anything less than 6 months and it's not a good idea.
I understand that if the tumours are ER+/PR+ then hormone therapy e.g. Megace may be a way forward. My oncologist mentioned it to me a month or so back, when we thought I might be facing another recurrence (my scan turned out to be clear, thank goodness). She said that she knows of ladies who have stayed on it for many years and it has controlled things for them. I believe that it can be particularly useful for recurrences in the lung. Perhaps worth investigating?
I hope things become clearer for you.
Helen

carolenk said:

Thinking about Linda P.
For any of you who are comparing your situation to Linda's, please keep in mind that Linda chose to fight aggressively against the metastatic cancer in her liver.

She was so hopeful that the radioembolism procedure (done twice) would buy her more time. However, the procedure proved to be too damaging to her liver & she died of liver failure which of course was secondary to USPC. No one knows how long Linda would have remained alive had she not elected to have the radioembolism done.

mhilda said:

Mets to Lung
I have Endometrial cancer that has mets to my right lung. I am on Tamoxifen since July. When I went to the Oncologist in September the tumors had not grown. I go back the week after next to see what the tumors are doing. I am estrogen positive and progesterone negative. I am trying to stay positive.

nancygt said:

mets to lung
Good to know the tamoxifen is keeping it stable for you as Iam also ER and PR negative.
I wondered if it made sense not to jump back into chemo but stay on tamoxifen and your success combined with earlier postings from Linda P. is encouraging. Good luck on upcoming check up amd keep us posted.

HellieC said:

Chemo is do-able
Just wanted to let you know that I had chemo after surgery for my second recurrence (pelvic recurrence) - I am now 11 months NED (no evidence of disease). I won't lie to you - the chemo can be quite hard (it varies enormously, depending on the drugs used - some ladies sail through, others find it harder) but it IS do-able. You WILL get through this and we will be here with you every step of the way.
Thinking of you
Helen xx

CindyGSD said:

Well....
I can recommend something for pain relief but it isn't legal in most states. I've seen it talked about on other cancer threads but never in uterine. Try checking out the bone cancer site. They might have recommendations for pain.

Take care,
Cindy

CindyGSD said:

Yes...
..it works as a pain reliever too without the side effects (namely constipation) that you get from narcotics. I considered taking it when I was having the bone pain from the taxol after chemo, but it is not legal where I'm from and I didn't want to explain to my doctor why my blood tests suddenly turned up funky assuming it could even be seen in bloodwork if they weren't looking for it to begin with. I wouldn't have mentioned it given that you have lung mets, but apparently it doesn't effect the lungs short term. My friend's sister, diagnosed with lung cancer resorted to using it when other pain meds either failed or caused too many issues for her.

That said, if its deep bone pain, it may not work. I think the effects are similar to taking something like ibuprofen, more of a muscle relaxer then anything else. I've had good luck with Vicodin, but it puts me in lala land, and I can only take it when i'm lying flat on my back, otherwise it makes me sick and dizzy and I certainly can't function on it.

I hope you find something that works for you.

Take care,
Cindy