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

TiggersDoBounce

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.

Nancy
Sending hugs and prayers..I can sense how scared and lost you are feeling

I agree with Miss Hellie, I think it is time for a second opinion or at least a collaborative meeting with some options explained....

Can you share whether you have UPSC or not?

Keep in touch...

Laurie

Kaleena

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.

Nancy:
I am sorry about your
Nancy:

I am sorry about your recurrence and agree with the others that a second opinion may be beneficial to you or at least you will have a better look at this.

Sending comforting thoughs your way.

Kathy

nancygt

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.

mhilda

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.

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

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.

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.

daisy366

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.

Nancy
So sorry about the progression of the UPSC. I'm also on same time schedule as you and Linda P. with one recurrence under my belt. I got scared when Linda was failing and talked to me doctor. He explained that not all UPSCs will act the same - depending on the way they divide some will be more aggressive - Linda's obviously was. He was trying to help calm me. So I encourage you not to think you are a definite goner at this point. I'm happy you got in earlier to your doc. It really helps to have all the information.

Are you near Moffitt? I live in Fort Myers area. Keep us posted.

Praying for you!! Mary Ann

carolenk

daisy366 said:

Nancy
So sorry about the progression of the UPSC. I'm also on same time schedule as you and Linda P. with one recurrence under my belt. I got scared when Linda was failing and talked to me doctor. He explained that not all UPSCs will act the same - depending on the way they divide some will be more aggressive - Linda's obviously was. He was trying to help calm me. So I encourage you not to think you are a definite goner at this point. I'm happy you got in earlier to your doc. It really helps to have all the information.

Are you near Moffitt? I live in Fort Myers area. Keep us posted.

Praying for you!! Mary Ann

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.

RoseyR

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

Hellie, Can You Fill Me In?

Hellie, can't remember whether your tumor was UPSC or MMMT: could you clarify? Am interested in the recommendatin for Megace should you have a recurrence.

Thanks,

Rosey

HellieC

RoseyR said:

Hellie, Can You Fill Me In?

Hellie, can't remember whether your tumor was UPSC or MMMT: could you clarify? Am interested in the recommendatin for Megace should you have a recurrence.

Thanks,

Rosey

Rosey - not MMMT or UPSC
My cancer is the more common adenocarcinoma - not one of the more aggressive varieties. However, although it isn't aggressive, it is classed as "persistent", as it has survived a hysterectomy and then, for first recurrence, pelvic radiotherapy. So far, it is 10 months NED following treatment with carbo/taxol for second recurrence. It is ER+/PR+, so Megace is an option if it comes back again. But there are also chemo options - I guess we will cross each bridge if/when we get to it!
Helen

TiggersDoBounce

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.

Wow..
I guess I never thought that Linda's Radio Embolism treatment accelerated her Liver Failure...now I am even sadder to think that

Did she state that her physicians believed she may have lived longer had she not opted for the treatment?

Laurie

carolenk

TiggersDoBounce said:

Wow..
I guess I never thought that Linda's Radio Embolism treatment accelerated her Liver Failure...now I am even sadder to think that

Did she state that her physicians believed she may have lived longer had she not opted for the treatment?

Laurie

No one knows...
Dear Laurie

I am saying "no one knows" about Linda--it is certainly not something she posted that her doctors had said about her prognosis. There was only one Linda--not two (one who had the radioembolism procedure & another identical Linda who did not opt for the radioembolism procedure).

Sure, maybe the procedure extended her life a bit--or not. No one knows anything for sure. But somehow, when you read her explanation of her liver failure, it sounds like it was caused by the procedure more than directly from the cancer.

The radioembolism procedure seems to have been successful for others with mets to the liver. Linda's situation was unique to her as each of our own situations is unique to each of us. I guess that's all I was really trying to say--it is just human nature to make comparisions.

None of us has a doppleganger who is taking an alternate path that we didn't choose. We are all just making the best decisions we can with the current technology & information available.

Tresia23

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.

Breathless
Hi, I have been reading the posts about lung mets. I am looking for reassurance I guess. I am reasonably fit and not overweight. Meditating daily. Yoga sometimes when I am not too stiff! I had my one year follow up recently. Had pap done which was clear, but was having problems with breathlessness and palpitations. Have lost appetite which is how I have been since surgery and also have problems with bloating and indigestion also affecting my breathing.

My onc gynaecologist gave me a referral for chest xray which was clear. My primary care physician sent me for echocardiogram and have had Holter monitor on for 24hrs. Again good result.

First experienced breathlessness before surgery for endometrial cancer. My doctor put it down to anaemia at that time but it has continued and become more frequent. When I bend to pick up things or when I walk upstairs, even just looking out the window. No problem with walking on the flat. Have asked for a referral to respiratory specialist who I will see early January. Should I do anything else? Since I had cancer diagnosis I do not trust my judgment as much as I used to.

Mdotsie47

My cancer has also gone to the lung
I have just been diagnosed with my third recurrence of uterine cancer since 2008. I have had radiation and brachytherapy but not chemo. This time chemo is planned because the mass is in my lung and has already eaten into my ribs. I have been told surgery to remove the tumor will not work. It is very encouraging to read about chemo successes with this, but I am still really scared and glad to have a place to go to share thoughts .

mhilda

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.

Mets to Lung
I saw to Gyn/Oncologist this past Wednesday and the cancer has remained the same and has not grown. He said I was doing well and would see me again in 4 months. I am to have a CT scan a little over a week before I see him. He is keeping me on Tamoxifen.

HellieC

Mdotsie47 said:

My cancer has also gone to the lung
I have just been diagnosed with my third recurrence of uterine cancer since 2008. I have had radiation and brachytherapy but not chemo. This time chemo is planned because the mass is in my lung and has already eaten into my ribs. I have been told surgery to remove the tumor will not work. It is very encouraging to read about chemo successes with this, but I am still really scared and glad to have a place to go to share thoughts .

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

Mdotsie47

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

Thanks
Thanks for your encouragement! I am still in the stage of absorbing the information and my emotions are jumping all over the place, so it's wonderful to get hope for my future. I am in a lot of pain because the cancer has eaten into my rib bones. I need to get pain meds but don't want to be blotto all the time. Any experience with pain relief that allows you to still have a clear head would be most welcome.

I am nervous about chemo but I am more nervous about having a shorter life than I had hoped for, so if chemo is what it takes, bring it on!

CindyGSD

Mdotsie47 said:

Thanks
Thanks for your encouragement! I am still in the stage of absorbing the information and my emotions are jumping all over the place, so it's wonderful to get hope for my future. I am in a lot of pain because the cancer has eaten into my rib bones. I need to get pain meds but don't want to be blotto all the time. Any experience with pain relief that allows you to still have a clear head would be most welcome.

I am nervous about chemo but I am more nervous about having a shorter life than I had hoped for, so if chemo is what it takes, bring it on!

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

Mdotsie47

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

Legal pain relief
Are you referring to medical marijuana? I live in California where it is sort of legal. You have to get a card for it. But I thought that was for nausea. I will check the bone site. Thanks for the info.

I am picking up some Vicodin today. My experience with it is that it's not great for serious pain, but maybe it will get me through for now.

It is so nice to share this with a community of women who know this experience. I was feeling kind of hopeless but after reading the posts on this site I don't feel despair, but have hope.

CindyGSD

Mdotsie47 said:

Legal pain relief
Are you referring to medical marijuana? I live in California where it is sort of legal. You have to get a card for it. But I thought that was for nausea. I will check the bone site. Thanks for the info.

I am picking up some Vicodin today. My experience with it is that it's not great for serious pain, but maybe it will get me through for now.

It is so nice to share this with a community of women who know this experience. I was feeling kind of hopeless but after reading the posts on this site I don't feel despair, but have hope.

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

Mdotsie47

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

Vicodin
I agree with you about Vicodin. I take it in the early evening when I can put my feet up and zone out. It does take the edge off. It is very constipating, too. I've been taking miralax for that but it's not completely doing the job.

My rib is causing a knife stab pain in my side that is nearly unbearable sometimes. I have been told they won't treat it with surgery so I wonder if it's going to hurt for the rest of my life. I would like to know if anyone else has had lung mets that invaded the bone and how you were treated.