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

Karenhopeful said:

Thanks Jerry!
I will be sending for your book and cd. When I was finally able to get out ot the black depression I first had, I started imagining the prayers of my friends as bombs that were destroying cancer cells. I have no idea if any cancer has declined, but I know my left side is almost pain free now, compared to before I imagined this. My right side still is hurting, but I am confident God is with me, will give me strength for each day. I hope with your instruction on guided imagery, I will start bombing out the cancer on my right side too. I do believe with God all things are possible - I just need the belief. It is so easy for the negative thoughts to intrude. I start chemo this coming week. I will use your positive imagery to help guide the drugs to do their job along with my thoughts for healing.

Tresia23 said:

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.

Karenhopeful said:

First chemo on Feb. 9, 2012 went great!
I was terrified of how I would feel. Praise God, it was great! They gave me nausea meds, and benedryl first. The only indication of when the actual chemo started was a slight cool feeling. The benedryl let me relax and nap. It was a 5 hour session. No nausea, no pain, no uncomfortable anything that day. The next day, I had a bright red, hot, itchy face. They had said to expect that on my cheeks, but it was my whole face. Gone on Saturday. Saturday I was very constipated, took Senecot, and was eventually able to have a BM. Today I was fine but will continue with the senecot. I am still worried about getting the joint pains with taxol. Last night I did have a minute of tingling in my toes and ankles - not sure if that is the taxol. But it was brief. I am getting carboplatin/taxol for 6 treatments, 5 hours each once a month. I have uterine cancer that has gone into my lungs. Too large for surgery, I am uncomfortable and out of breath most of the time. I'm retired, but too tired for even housework, I have to sit and rest in the middle of making my breakfast or after taking a shower. I'm not so worried about my hair -though I may be when it actually happens - I am worried about the chemo shrinking my tumors. I just reread most of the posts, and one of the early ones was so encouraging that the chemo really shrunk her tumors. I sure hope it does the same to mine!!!

Mdotsie47 said:

Wishing you the best
I've been off the posts for a while dealing with lots of issues. I'm glad your chemo started well and hope it continues to go well and is very effective.

I am a little concerned that most people with lung mets are on chemo and I am not but I guess I have to trust my doctor. He says the chemo drugs he would use could cause their own set of problems and it's better to try radiation and hormone therapy first.

I have been going to the Stanford cancer center gyn cancer survival group. They provide lots of info I had not heard before on supplementing medical therapy with lifestyle and nutritional therapy. What I have learned there: even if you're really tired (and I am) do at least 20 minutes a day of exercise with the goal of working up to an hour a day. Many patients and doctors have found this an important therapy for extending life. I bought an Air Climber and do a twenty minute routine daily. It is exhausting but studies by doctors in Germany have found that patients who give in to their tiredness and don't exercise don't live as long as those who get even 15 minutes a day of whatever level of activity they can handle. Of course, everyone probably ought to check with her own doc to make sure this is OK. My onco say he doesn't think it helps, but my radiation onco says he definitely thinks it does help.

Another thing I learned about is broccoli sprouts. Studies at Johns Hopkins have have shown that eating one ounce of sprouts a day helps slow or stop tumor growth in many cases. The key is to grow them yourself from organic seeds and eat them when they are three days old. You can get the seeds and sprouter on Amazon, cheap.

The group is reading a book called Defeat Cancer, which has some good information.

I have been feeling very stressed about being too tired to work .i am self employed and have a big backlog of finished work that draws income, but it's so frustrating to not feel like working. I know stress is not good for my goal of life extension, but it's so hard to let it go. How do others handle this problem?

barbakamom said:

A second recurrence in my left lung
I just learned today I have a second recurrence in my left lung - the one that I had surgery on last year which was reduced in size by 1/2. My doctor recommends a second surgery, if the thoracic surgeon feels it's operable. The good news is that the metastasized cancer is confined to this one lung, my CA125s are still low, and the doctor said I do not have cancer anywhere else in my body, including the primary site in the uterus/pelvic area. So guess that makes me a candidate for surgery. From what I've been reading over the past few months, if your primary site is cancer-free or controlled, and the metastasis is confied to just one other organ, then surgery is a good option, assuming other variables are also positive, such as the operable location, size, number of lesions, etc. My doctor said probably chemo again, although I did not respond very well to chemo the first time, and we might throw in radiation this time, although that scares me. Is there anyone else who is relying on surgery/chemo treatments for their uterine adenocarcinoma cancer that has metastasized to the lung? I'd love to hear what type of treatment your doctor is recommending...

Karenhopeful said:

No News is Good News? Two questions
Hi all, haven't posted in a few days because I've been having some good days!!! A lot of my little pains have subsided. I still have a major sore pain in my shoulder/back area but it is a low pain level. I'm sure my next chemo will make it feel even better! I haven't had any bad after effect from the chemo. I am starting to lose my hair. Getting lots of strands when I brush. This started on my 11th day after chemo. I am not taking it off till I have to though. I might go wig shopping tomorrow.
I do have one thing going on that concerns me, maybe someone has had a similar experience or has information. I am only sweating on half of my body. My left side which feels good perspires on my face, hands armpits. My right side with the most pain does not perspire on the face, hand or arm pits. I'm trying not to worry, but also want information as I'm concerned that my brain could overheat in the summer if I'm not able to expel extra heat. The nurse at my blood draw didn't seem concerned -but I am. My first blood draw had lower counts in many areas, but they said it was fine so far. Trying to get in protein. Does anyone take extra iron supplements? I was almost lower than normal in my iron even before the chemo started.

No news is good news? Just wondering if some of the posters from 2010/2011 might be doing well now and don't feel the need to come here? I hope that is the case. Everyone else, take it one day at a time, make it through that day, enjoy it as much as possible, and have faith that you will get better!!!

Karenhopeful said:

Question about staging
Before my needle biopsy, I assumed I was stage 4 and very depressed. My oncologist said I was figo 3- which did give me hope. Does anyone know where I can see how figo 3 is described. I just found a description of stage IVb the worst scenario, and I think that is me. I have it in both lungs and a small tumor on my intestines. No possibility of operation on lungs unless it really shrinks as both sides were lemon sized tumors of about 3 inches. On the bright side, I felt really good yesterday, but think I overdid it, cause I was very tired today and achy in my back again. Maybe it is better not to know the truth about my staging. I had no hope and felt horrible thinking it was stage 4, I now have hope and feel like I might live for a few years thinking it is stage 3.

Karenhopeful said:

Checking In/ Questions
Just checking in, Everything is going okay. Had second chemo, no terrible side effects so far. I think some of the pain in my back/shoulder are going- but not totally gone, but I am noticing the uncomfortable,swollen sort of feeling, under my arm and arm pit again that I thought were gone. I am also getting little tiny pains - maybe nerves healing?- right below and around my port area. Anyone else get little pains in that area?

1.How low do your white and red counts have to be before they tell you you need Nupigen?
2.Are there any side effects from taking Nupigen.
3.For those who have finished chemo how long does it take to start feeling healthy?

Karenhopeful said:

Pancoast tumor and Horners Syndrome: Depressing statistics
I've been searching to find out why I'm only sweating on one side. I think I've found the answer: Horners Syndrome. It causes lack of sweating, pain and numbness under the arem, droopy eyelid. I have the first two sypmtoms. It is caused by an apex tumor in the lung which presses on a nerve bundle in the shoulder. I do have shoulder pain.And my tumors are both apex (one side has stopped bothering me thank goodness!) I am confused because the apex tumor is called a Pancoast tumor and it sounds like it is a primary lung tumor rather than a uterine lung tumor. Maybe it is any apex lung tumor no matter which type of cancer caused it. I don't know. It concerns me because perhaps the treatment would be different. Could my needle biopsy be incorrect? In reading the information there was a prognosis - if your mediastinal lymph nodes are involved only 9 months. From what I coudl figure out, mine are involved. 5 along the heart aorta were enlarged on my first ct scan. I guess I can only hope the chemo has shrunk those too. It also said no one with Horners Syndrome, mediastinal lymph nodes and incomplete surgical removal of the tumor has lived 5 years. Quite depressing :-(

I'm also concerned that my PA assisstant that I see at my gyne-oncologist, nor the oncology nurses I asked knew anything about horners syndrome. I do need knowledgible doctors and nurses to help me fight the disease.

One other question. Have any of you coughed blood? My cough comes and goes. Last night I coughed hard and coughed out a quarter inch of white looking skin attached to two quarter inch blood veins (what it looked like to me). This is also scary and not positive. I guess I'm having a down day and need to talk to my doctor for explanations. I will try not to think about the prognosis statistics and hope that I am one of those who will do better and try to enjoy each day that I do have - I had actually been feeling quite good till I read this.

daisy366 said:

Mdotsie and Karen
Mdotsie, I agree about the staging. I think it's only relevant for initial treatment decisions. Once there's recurrence then it's a whole new ballgame. It sounds like you are doing the very best in this situation. You have my admiration, hugs, and prayers that you respond to all the treatment and positive things you are doing.

Karen, I did not experience the issues that you are having and never had those shots. As to the feeling healthy again - I think that the fatigue lingered for awhile. Regular exercise (mostly walking for me) and participating in my hobbies (singing and bowling) helped me feel normal and energized. I enjoy a nice quality of life.

Wishing the same for both of you. Hugs, Mary Ann