CSN Login
Members Online: 18

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

missbabsonmars's picture
missbabsonmars
Posts: 29
Joined: Jun 2010

My uterine cancer metastasized to my lungs. I went in for bronchitis; otherwise I would still be walking around with it spreading by the day, as I am in otherwise excellent health. I start chemo. on Friday. Just wanted to enter the forum and be part of the community. I have a fantastic support team with family and friends but would like to connect with other survivors going through this or who have been through this.

Thanks,
Babs in sacramento, Ca

nancygt
Posts: 86
Joined: Jan 2010

I also have mets in lungs and worry about the bones. My best friends just passed away after 5 years of fighting Stage 4 lung cancer. I do not want to sound like a pusher but she used morphine/oxycontin(OC) successfully for over 4 years -tumors had taken away part of her breastbone early and she was never without pain. They used a combination of extended release OC for daily pain with a supply of immediate relief for breakthrough pain.She said it did not make her as "goofy" as the Vicodin, although the constipation was a chronic problem she battled. She did remain concerned about some degree of impairment driving and was very careful about timing dosages when she had to drive. The last year or so, the large dosages combined with weakened state(breathing issues, anemia, post op from brain surgery) made her friends intervene and take up the slack for driving as the medicine did have a greater impact as dosages to control pain had to be upped. We drove her or she used Road to Recovery drivers from American Cancer - that has made me volunteer for that program-I am lucky to still be able to drive myself to most appointment and have my husband to help when that is not advisable (e.g. chemo days). But it takes so much strength and passion to deal with the disease that I hate to see patients worrying abouty how to get to appointments. And I also hate to see anyone coping with pain if it is not necessary-my friend asked her oncologist if she was a junkie and addicted to the pain meds and he replied "Who cares-would you rather be addicted to pain ?" Smart aleck answer but some truth to it. I never took antidepressants or sleeping pills before the cancer diagnosis but now the leveling out effect of lexapro and the good night's sleep I count on with Ambien are very important to me - probably addicted. And I have been lucky with pain but knowing my cancer has now spread through bloodstream (lungs now but bones more likely), I will avail myself of strong effective painkillers when the time comes and try to be prudent about the side effects and being responsible.
As for treatment, tamoxifen to hope to stabilize growth in lungs and probably carboplatin and Taxol again (been several years) after first of year as we hope to get body stronger and fit in a few trips before chemo makes that hard.
You should not have to hurt for the rest of your life- I am in smaller city amd my onc will probably do pain management-but my friend was in big city hospital complex and he used their pain mgmt. clinic who had an understanding of managing severe chronic pain.

Mdotsie47
Posts: 28
Joined: Dec 2011

I have no hesitation asking for stronger pain meds when I need them. Right now two Vicodin helps enough most of the time but it makes me so spaced out that I am pretty useless.

The new wrinkle in my case is my latest CT has found a 2x2 cm mass in a pelvic lymph gland. I have already had extensive radiation in the area and probably can't have more. I' m not sure how effective chemo will be for this. I'm feeling pretty discouraged, but I don't want to give up.

Anyone who knows of any successful treatment in a situation like this could give me hope!

HellieC
Posts: 436
Joined: Nov 2010

I'm so sorry you've had a diagnosis of a pelvic lymph gland mass. You're probably right that you can't have further pelvic radiation - but there are likely to be other options for dealing with the little blighter! Further surgery and/or chemo sound likely routes. If it's an isolated nodule, then they may be able to remove it completely with surgery.
Please don't give up hope. We're all here for you and there will be a way forward.
Kindest wishes
Helen

Mdotsie47
Posts: 28
Joined: Dec 2011

Thank you. You give me hope. I have seen the prognosis statistics and they are so bad I can't bear to think about them . I want to be in that tiny percentage that survives longer than most.

A friend suggested contacting one of the special cancer care centers to see if they have any more options to offer than my doctor does. Has anyone had experience with these? I don't know whether they are covered by insurance but I also don't know why they would know more than a doctor in the heart of silicon valley, where I live.

Double Whammy's picture
Double Whammy
Posts: 2285
Joined: Jun 2010

Hi Neighbor. I'm up by Sacramento.

You're in close proximity to Stanford and UCSF. Both NCI accredited cancer centers and both have some top notch clinicians, researchers and clinical trials. Your insurance should cover a second opinion just about anywhere if you want one. All NCI cancer centers are supposed to have easy access to information and clinical trials amongst the network.

Several women on this board have sought second opinions at MD Anderson or Mayo. Both NCI cancer centers.

Just sayin' . . . second opinions can help resolve uncertainties to treatment choices.

Suzanne

Mdotsie47
Posts: 28
Joined: Dec 2011

So far in this round of cancer (2nd recurrence, with masses in the lung and aortocaval lymph node, and in the third rib, which is almost completely eaten by cancer), I have seen five doctors. Three of them agree on the treatment I should have so I guess I have enough opinions. I hope so, anyway. I start radiation on the rib/lung mass next week and will have chemo after that. My rib is causing a lot of pain, which I am told will get worse before it gets better. No plans for surgery.

If those who have had chemo for uterine cancer can give me an idea of how long your treatment affected your health as far as being tired, or any other symptoms, I would like to know. Was it only during treatment, or did the effects last beyond your final chemo?

My doctor has added two drugs to my pain management regimen. One is elavil and I think the other is called neuronal, though I have the generic form of it. Both take a while to build up in the system, so I am not benefitting yet. They cause drowsiness but that is good when I' m hurting.

JoAnnDK
Posts: 276
Joined: Jun 2011

You might want to re-post your question.....your post ended up waaaay back among posts from a long time ago.

JOANN

Karenhopeful
Posts: 38
Joined: Jan 2012

Mdotsie47, I go for a needle biopsy on Monday January 23. I have masses at the top of each lung and one is into the top bone. My back aches, my breasts hurt - that is what led me to getting my chest scanned. I am not sure at this point whether it is uterine cancer spread to the lungs or lung cancer. I am 4 years out from my original uterine surgery. The prognosis for either one is so discouraging I'm having a really hard time finding a positive outlook, feeling really depressed. This page has been the most positive I've found so far. Oh, he also said there were 5 inflamed lymph nodes in the heart area. And I have a small tumor in the abdomen as well, grape size. Both lungs are lemon sized.

I was wondering how you are doing? Is it showing any halt to the cancer? How much pain are you experiencing? So are you having all your radiation and then the chemo, or both together? Have you been given any prognosis? How long is your treatment supposed to give you over doing nothing? Or maybe the chemo is continuous but with different kinds to keep it from growing again?

I want to be hopeful, I know it helps so much. But nothing I've seen has given me much encouragement.
I hope you are well enough to reply.
Karen Hopeful

Mdotsie47
Posts: 28
Joined: Dec 2011

To try to answer your questions to me....my treatment plan right now is three weeks of radiation (just finished), hormone treatment with Megestrol 4x a day, and zometa infusions to rebuild my rib bone. I was in extreme pain before radiation. Two OxyContin and lots of Vicodin daily, as well as daily gabapentin. I have been able to eliminate the Vicodin and take only one OxyContin daily. I still take three gabapentin daily. The pain is now one or two on a scale of ten. I will have a CT scan in late February to see how much effect the radiation has had on the lung and rib tumors. I also have a small mass on my aorta that may be helped by the Megestrol.

My doctor says he is holding off on chemo to see if these other things work, because he is concerned about bone marrow damage from chemo. He is a respected gynecological oncologist, so I have been trusting his judgement up to now. Some of my friends and family are dissatisfied with my treatment results up to now and want me to get other opinions, but I have not done that yet. I think my doctor is following the protocols for treatment that his experience dictates. Maybe I'm wrong. I feel a little worried about this, but I trusted him completely until other people started questioning my treatment.

I wish you good luck in your treatment. Let me know how it goes.

I did not ask for a prognosis because I am scared to hear it and want to stay positive and hopeful. I know at this point my treatment is just putting out fires. There is no "cure" at this point, but if the docs can keep things from growing or getting too numerous and invasive to treat, maybe that buys me more time. I am operating on the assumption that it's not hopeless, even though I know the statistical prognosis is bad.

Simmons
Posts: 2
Joined: Jun 2006

I had a needle biopsy January 23 verifying uterine cancer spread to lungs. I will be getting chemo carboplatin/taxol for 6 months, once a month, 5 hour treatment. Will have a ct after first two to see if it is helping.Port was put in Jan. 30. I have a constant pain in my chest and upper shoulders of my back almost all the time, it is not terrible but enough to keep me from doing anything. If I am standing for over 5 minutes it really starts hurting. I'd say from 2-4 on a pain scale. So far I've been able to use advil or tylenol, but I do have a narcotic type prescription as well, if it gets too bad. I'm hoping that chemo shrinks those tumors and I feel better and better.

Those who had taxol, what did you do to prevent or aleave leg pains, or did you have any?

Mdotsie47, I really appreciate your posts since it seems we have some similarities. I did ask about prognosis but she was vague. Just as well. She did say she had someone with a similar case that is fine 4 years out.

For any Christian sufferers, I am reading Jesus Lives by Sarah Young and it has pulled me out of the black pit I was in and I feel so much better emotionally and spiritually.

This request is for anyone who has posted in the past. Please post again. Let us know that you are doing great and you've been too busy to post. Or let us know your problems. Saying a prayer for all of my fellow suffering sisters. Let us all experience healing. AMEN

Simmons
Posts: 2
Joined: Jun 2006

Not sure how I got switched to my last name. I think I may have logged onto this site in 2006 when my mother was diagnosed with stomach cancer. She only lived 6 months after her diagnosis. I got my uterine cancer in 2007, was told only a 5% chance of it coming back. DANG! Went 4 years 3 months before noticing anything. Had my scheduled CT scans, but none of my doctors were doing chest xrays. :-( Karen Hopeful Simmons

barbakamom
Posts: 14
Joined: Jan 2012

I also have uterine adenocarcinoma - stage 1c, no lymph node involvement - total hysterectomy in 2008 with 3 brachytherapy sessions. Told I was 99.5% cured. Then three years later, had two spots in my left lung - one 3 cm and one 4cm. By the time I had surgery to remove them, they had grown to 4cm and 5cm. Had a thoracotomy, with left lower lobe removed, and upper part resectioned, losing 1/2 of my left lung. This was followed by 3 sessions of carboplatin chemotherapy. I was allergic to Taxol, stopped breathing and ended up in ICU, so only carboplatin. But after 3 sessions, had to stop, since my platelets fell dangerously low. Am now monitored monthly for CA125 levels, and quarterly with CAT scans. CA 125 currently is a 7, down from a high of 90 pre-surgery. My next dr's appt is in 2 weeks, and each time I get close to my dr's visit, I start getting very anxious. But I am thankful to be working full time since June 2011, since I am single and support myself. But I am concerned about the day I may become too ill to work. Is anyone else working full time, too? I find it helps keep me busy....but I am fatigued, and find stress aggravates my breathing. Please send good thoughts my way for my Feb 15 appt... Thank you.

Karenhopeful
Posts: 38
Joined: Jan 2012

Barbara and all, I have added you to my daily prayers. I know prayers do help.
Barbara, I'm amazed you kept working. I feel like a cry baby. I'm retired and barely move from my chairs, as I start to hurt when I stand. I have two masses one at the top of each lung: 62mm, which I suspect is about 6.2cm, 5 lymph nodes look to be involved already, small tumor in lower abdomen, no surgery unless they really shrink in size. One doctor says nibbling at bones, the other says no. Biopsy said figo 3, but I always thought it was 4 when it was in several places. 3 was a little better sounding than 4. Certainly gave me glimpse of hope, thinking it 4 was like an immediate death sentence.
Stay courageous! Imagine each prayer destroying cancer cells. Praying for good news on the 15th.

barbakamom
Posts: 14
Joined: Jan 2012

Hi Karen,
Thanks for your kind words of encourgement. While going through surgery and chemotherapy and out on FMLA last year, I also lived with my mom and nursed her through lung cancer - she passed away in July. So, overall, I think I'm doing pretty well, but I have my moments. At this point in time, there is NED anywhere else in my body, but of course, that's why I am so apprehensive about my next appointment! Only 8 more days to wait. But on the positive side, I am doing what I can to help myself - eating more fruits and vegetables, have intentionally lost 22 pounds, take regular walks for exercise, and listen to music to manage stress. I do think that being able to work full time is helpful - at least I have insurance! I also hope that hearing about how I'm living a high quality of life with only 1-1/2 lungs gives hope to others - I'll never be able to jog for exercise - but never did that before! LOL
I'm praying for all who are fighting this terrible disease and am glad we are here for each other.

Mdotsie47
Posts: 28
Joined: Dec 2011

I hope all the lung mets people here are doing well. It's a frightening diagnosis. After six months I guess I have gotten used to it, and don't feel as scared any more. I am still having chemo every three weeks, followed by really severe pain in my arms, hands, legs and feet. I understand this is the paclitaxel working. The odd thing to me is that my cancerous rib and lung mass also hurt severely after chemo. I wonder if this the chemo working on these areas because they don't hurt after the second week.

The important thing for me and for all of us is to stay positive and not give up. One of my onco's is less positive than the other about whether we can get rid of the lung mets, but he is attacking them with everything and the CT after chemo will show what effect combined radiation, Megace and chemo have had.

My other onco calls this a treatable chronic condition. I can live with that as long as it stays treatable. Love that word!

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

Babs, your post was very well written and calls for what has sometimes been called the "fourth angel" of cancer cure. The first three being the doctor, nurse and caregiver. To complete the team is the need for a mentor. By mentor I refer to someone who has had the disease to the point of near death and still managed to work one of those "miracle" remissions. This means, unfortunately, that most of the well wishers, counsellors, doctors and even ministers do not qualify.
I am an 80 year old survivor of metatastic kidney cancer that, after multiple killer surgeries and 8 solid months of a failed treatment that was worse than the disease left me with the awful "only three more months at most" death sentence back in 1993. Since then, I have maintained a pro bono website to share my story , and now that of many others, of how I developed my own program of guided imagery to beat the diseasse. You might want to check out this website www.cancerwarsmaarsjourney.com . In particular I wish you would go to the "inspirational stories" page and click on the picture of Peggy Carson. Her story is a lot like yours and she has been willing to share with people such as you. Read some of the other stories and from them take on a dose of "information based hope". None of us can see the future, only God can do that, but He does give us hope along the way. The essence of this hope can be expressed in the simple, true statement that it IS possible, you CAN defeat cancer.

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

Babs, your post was very well written and calls for what has sometimes been called the "fourth angel" of cancer cure. The first three being the doctor, nurse and caregiver. To complete the team is the need for a mentor. By mentor I refer to someone who has had the disease to the point of near death and still managed to work one of those "miracle" remissions. This means, unfortunately, that most of the well wishers, counsellors, doctors and even ministers do not qualify.
I am an 80 year old survivor of metatastic kidney cancer that, after multiple killer surgeries and 8 solid months of a failed treatment that was worse than the disease left me with the awful "only three more months at most" death sentence back in 1993. Since then, I have maintained a pro bono website to share my story , and now that of many others, of how I developed my own program of guided imagery to beat the diseasse. You might want to check out this website www.cancerwarsmaarsjourney.com . In particular I wish you would go to the "inspirational stories" page and click on the picture of Peggy Carson. Her story is a lot like yours and she has been willing to share with people such as you. Read some of the other stories and from them take on a dose of "information based hope". None of us can see the future, only God can do that, but He does give us hope along the way. The essence of this hope can be expressed in the simple, true statement that it IS possible, you CAN defeat cancer.

Karenhopeful
Posts: 38
Joined: Jan 2012

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.

gwhite's picture
gwhite
Posts: 18
Joined: Jan 2012

What a great, positive response, Karen. You are right on with your imagery and it will only get better. For a year after my second surgery, the worst of the two, I was plauged by those lingering pains that would come and go, just enough to scare the hell out of me had I let them. I would just say to them, no, you are not recurring cancer for the cancer never did hurt. Finally one morning I woke up with the strangest feeling that something was different. Then I realized that nothing was hurting! That was 15 years ago and here I still am.
I hope you noticed the bit about the new technology in the manufacture of CDs for guided imagery that we were able to develop last summer. This has enabled us to embed the alpha frequency into the voice and sound tracks of this new CD. At last the CD is transmitting in perfect tuning resonance with the right brain. Last August we put the first 5 of these to be produced into the hands of 5 patients with advanced disease and the results are now in and they are wonderful. A detailed report has just been compiled and can be transmitted by email. Suffice it to say that all five got favorable resoponses; one complete remission, two near complete remissions, and two stable diseases wherein growth stopped in grade 3 and 4 tumors. If you would like, just email me at maars@charter.net and I will email you a copy of this most exciting paper. I am glad for the opportunity to be your friend.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Work is very stressful. Stress is not good for us.

With your history, I'm sure you qualify for Social Security Disability - I did. Your benefit would be equal to your full retirement benefit if you continued to work. I encourage you to do the math and see if you can get by - SS also told me that I could earn up to $1000 month (not a penny more) and still collect benefits.

I encourage you to check this out. I applied online and go approved immediately. Others have gone to the SS office and also received good news about qualifying.

All the best and lots of hugs to you, Mary Ann

Karenhopeful
Posts: 38
Joined: Jan 2012

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
Posts: 28
Joined: Dec 2011

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?

snowbird_11's picture
snowbird_11
Posts: 160
Joined: Oct 2011

Hi Mdotsie, I have not been posting on this thread previously as I did not have lung mets -- last Friday I found out that i have innumerable nodules in my lungs. i also have a lesion in my liver. I just saw my gyn-onc yesterday and have started tamoxifen treatment for similar reasons to your doctor's recommendation. After I had my debulking surgery 4 yrs ago my gyn onc told to get up and walk, walk, walk - it would tell my body that i wanted to live. I keep that thought with me always, particularly on dreary days when I just want to curl up and do nothing. When i told my current gyn-onc that i had been able to walk an 18-hole hilly golf course while pushing a cart and playing and enjoying it, he said 'Keep On Doing That!' Of course that's not my daily activity but I still walk, walk, walk.

Yes we must definitely control our stress - i think that is the major cause of my illnesses and likewise the hardest for me to manage. I'm looking to get back into meditation and guided imagery - because my life does indeed depend on it! Have you read Servan-Schreiber's Anti-cancer A New Way Life? , also Simonton's Getting Well Again? Both are helpful for our mental wellness.
Healing thoughts to you,
Annie

Mdotsie47
Posts: 28
Joined: Dec 2011

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
Posts: 14
Joined: Jan 2012

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...

TiggersDoBounce's picture
TiggersDoBounce
Posts: 413
Joined: Oct 2009

Keep it going ladies! Looking forward to your positive updsates following your treatments...

Laurie

Karenhopeful
Posts: 38
Joined: Jan 2012

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
Posts: 38
Joined: Jan 2012

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.

Mdotsie47
Posts: 28
Joined: Dec 2011

Staging is confusing. I was told I was 1C just after my hysterectomy, but a year later the cancer was back, so was the original staging wrong? Now I have three problems in the chest-a lung mass, destroyed rib and aortal mass, all uterine. I guess this is called recurrence, but I'm not sure it matters what stage they call it when it has spread.

I start carbo/taxol Tuesday because my onco is not satisfied with the radiation results.

My radiation onco calls my present status "chronic treatable illness". I have read the statistics even with chemo and radiation and have decided they are too grim to pay attention to. Instead, I am exercising as much as I have energy for, eating broccoli sprouts and other fruits and vegetables, and trying to keep a positive attitude. This is hard sometimes, but better than feeling sorry for myself.

I hope everyone in this predicament has as much joy in her life as possible. It helps to share with you who are on this site. Thanks for being here!

fearlesshoneybadger's picture
fearlesshoneybadger
Posts: 9
Joined: Feb 2012

The National Cancer Institute (www.cancer.gov) has the FIGO stages (and how they compare to the other system from AJCC (the TNM sytem)). The FIGO stages for endometrial cancer are presented below, copied from NCI's website (http://www.cancer.gov/cancertopics/pdq/treatment/endometrial/HealthProfessional/page3).

FIGO Stages

I b Tumor confined to the corpus uteri.
IA b No or less than half myometrial invasion.
IB b Invasion equal to or more than half of the myometrium.

II b Tumor invades cervical stroma but does not extend beyond the uterus. c

III b Local and/or regional spread of the tumor.
IIIA b Tumor invades the serosa of the corpus uteri and/or adnexae. d
IIIB b Vaginal and/or parametrial involvement. d
IIIC b Metastases to pelvic and/or para-aortic lymph nodes. d
IIIC1 b Positive pelvic nodes.
IIIC2 b Positive para-aortic lymph nodes with or without positive pelvic lymph nodes.

IV b Tumor invades bladder and/or bowel mucosa, and/or distant metastases.
IVA b Tumor invasion of bladder and/or bowel mucosa.
IVB b Distant metastases, including intra-abdominal metastases and/or inguinal lymph nodes.

a Adapted from FIGO Committee on Gynecologic Oncology.
b Either G1, G2, or G3 (G = grade).
c Endocervical glandular involvement only should be considered as stage I and no longer as stage II.
d Positive cytology has to be reported separately without changing the stage.

Pecorelli S: Revised FIGO staging for carcinoma of the vulva, cervix, and endometrium. Int J Gynaecol Obstet 105 (2): 103-4, 2009.

Karenhopeful
Posts: 38
Joined: Jan 2012

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?

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

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

Karenhopeful
Posts: 38
Joined: Jan 2012

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's picture
daisy366
Posts: 1493
Joined: Mar 2009

I hope you can get some answers quickly. Remember second opinion is always there!! If it was me I would bring the coughed up material to doctor - maybe there's something they can check or help with diagnosis.

It sounds like you are dealing with all this well. My prayers are with you that you get some positive news and that you get all the help you need now.

Hugs, Karen. Mary Ann

Mdotsie47
Posts: 28
Joined: Dec 2011

My second chemo was three days ago. Yesterday and today my entire body has been in pain, a deep intense ache. I want to get up and move but really have so little energy that a Percocet, heating pad, and a curl-up under the covers is about all I'm good for today. This happened last month, too, so I know it will pass.

I admire all of you who exercise right through it. I do move around as much as I can, but I've got to do more.
Since I started chemo I've dropped off some of my complementary therapies, but I still do the leafy greens and pomegranate juice.

Has anyone else been advised to take live probiotics? Do you know why this was recommended to me?

After all I've read about what works and what doesn't, my impression is nutrition and lots of exercise are the most effective complements to medical treatments. Yesterday I read that a new study has found that an aspirin a day can help delay tumor growth in uterine and some other cancers.

Anyone know about this?

Mdotsie47
Posts: 28
Joined: Dec 2011

My second chemo was three days ago. Yesterday and today my entire body has been in pain, a deep intense ache. I want to get up and move but really have so little energy that a Percocet, heating pad, and a curl-up under the covers is about all I'm good for today. This happened last month, too, so I know it will pass.

I admire all of you who exercise right through it. I do move around as much as I can, but I've got to do more.
Since I started chemo I've dropped off some of my complementary therapies, but I still do the leafy greens and pomegranate juice.

Has anyone else been advised to take live probiotics? Do you know why this was recommended to me?

After all I've read about what works and what doesn't, my impression is nutrition and lots of exercise are the most effective complements to medical treatments. Yesterday I read that a new study has found that an aspirin a day can help delay tumor growth in uterine and some other cancers.

Anyone know about this?

Karenhopeful
Posts: 38
Joined: Jan 2012

Hi Mdotsie47, I've been wondering how you are doing. I say a prayer for you every day. So sorry to hear that the chemo is really knocking you out like that. At least it sounds as though it will be over in a day or so. Let your body rest if that is what it needs!! I get a very red, hot, itchy face the day after my treatment (carboplatin and taxol). I take Senecot so I don't get constipated. I have heard aspirin can help, I thought it was mainly colon cancer, not sure. Someone sent me an email about asparagus, so I have some morning and evening. I've also heard tumeric kills tumors. I sprinkle some in my oatmeal along with cinamon, blueberries, flax seeds, two egg whites, small bits of apple,pecans or walnuts. Quite a concoction, but doesn't tasete bad. My diet is not as good as it should be cause I don't really have the motivation to cook anything.

I don't know if it is brain fog, or what, but I missed an appointment with my oncologist last week, and one with my regular doctor this week. Thought they were on different days or weeks.

I'm not feeling too bad, however, I now have numbness under my arm pit (been there since the beginning) and it has moved in one day down to my wrist. My thoracic surgeon asked if my little fingers or fingers were numb when I met him back in January, so I guess that must be the progression. It worries me that perhaps the tumor is growing and not shrinking - however I am going to be healed and it will go away eventually.

I have gone to two healing services. If you believe in Jesus this might help you. In the Bible, Jesus never refused to heal anyone who asked Him for healing. Jesus is the same today as yesterday, so He still will heal if we ask. I Peter 2:24 says "by His stripes you have been healed." He has already provided the healing if we have the faith to accept.

I have my third chemo on Thursday if my white blood cell count is good. Last week it was okay, but I had taken 3 neupogen shots in the days before. I'm hoping my counts are good so I can get the chemo. We are planning to go on a 3 week vacation the next week right after my blood work is done. If I have to get chemo, it will delay us at least a day. I'm feeling good enough that we decided to drive instead of taking a plane. Plus, it eliminated any changes in flights and car rentals if my chemo was delayed.

Best Wishes to all on this site. May the precious blood of Jesus shield us from all diseases and evil.

bonniep's picture
bonniep
Posts: 36
Joined: Jun 2010

I've read all the comments pertaing to Mets to the lungs and I also am one of you. My recurrence was in Jan, 2012 (exactly 1 year NED). I went in for pain in neck, shoulder, arm. CT scan showed 4cm x 3.5cm mass in Supraclavicular lymph node and small spots on top left & right lobes & several smaller spots in the remainder of the lungs. I've been on Taxol/Carbo since Jan, 16th. The mass has significantly reduced in size (sight & touch) and my CA125 has fallen from 79 to 35. Through all of this, the main focus has been the mass in my neck. My ONC (whom I trust) has not been the least bit concerned about the lungs. He says the chemo will take care of it. Frankly, I haven't been concerned either, until now - my mind at work! I feel like I'm getting congestion or the typical symptoms I've experienced my whole life when I get bronchitis or an upper respiratory infection when I didn't have any spots on my lungs. Up to this point I have not felt anything pertaining to my lungs with the spots being diagnosed. Is it possible to just get the normal, everyday colds & infections without them being related to cancer? I do have my CT scan scheduled for tomorrow and will know the results on Monday. I'll also have Chemo #5. Just trying to prepare for the worst while expecting the best. How bad does Mets to the lungs have to get before you experience symptoms from the cancer?

Karenhopeful
Posts: 38
Joined: Jan 2012

I found out my shoulder and back pain and very full feeling in the center of my chest was due to two tumors of about 60+mm on each side at the very top. I think this translates to 6cm or about 3 inches. It is also in my aortal lymph nodes, 5 lit up. At first I didn't think it could be cancer in the lung because we were in Florida and I was swimming laps holding my breath and I could hold it just as long as always. However, by the end of January I was getting very short of breath when I stood for just 5-10 minutes. This has improved to about 30-50 minutes since chemo started. If I lift heavy things, or stand, bend, move a lot to do household chores, I still get short of breath. I was babysitting my two granddaughters 1 and 4 yesterday. After 3 hours of picking up the one year old a half dozen times, I was ready for a nap and really tired the rest of the day. When I saw my thoracic surgeon on Jan 16, I had no cough,no blood spitting, or numbness in my arm. All of those symptoms have come. Cough is now seldom, I coughed some type of bloodied flesh only two times. There was numbness under my arm from the very beginning. On Palm Sunday it moved all the way down to my wrist and I do feel tingles in my finger tips. I'm praying my chemo today will end that. My other symptom is that I only sweat on half of my body. I've been told by an online doctor that it is due to the tumor pressing against a bundle of nerves under my right shoulder in the back. I have had a few days where I also felt congested, like a cold might be coming on. I think those days related to sinus draining during the night. My oncologist seemed sure that the carbo/taxol would do the trick. She said they have had great results. She does not do the CA125 blood test. I go for a ct scan in May. My left side quit hurting right away, My right side has gradually gone from a pain of about 4 down to .5 or 1. It has been a little more lately and that is a worry. However, I am believing God has already provided for my healing and has told me it is coming and to be patient. Since your nodules were small, and you have already had 4 treatments, I'd bet they are gone or nearly so and you are feeling a normal cold type of congestions. Stay away from ill people. Eat healthy. Have you had any neupogen shots to improve your white blood cell count. I have once and imagine I will again as my counts do down gradually over the weeks between chemo. My chemo is supposed to be 6 treatments once a month over 6 months. What is yours? Good luck, let us know what the CT says.

Karenhopeful
Posts: 38
Joined: Jan 2012

Wow, almost a month since my last post. I was feeling really good for a while. We were on vacation, well actually a work week at our rental home in Florida. I felt normal and did normal things-compared to doing practically nothing before. By the end of the week, I was tired and my shoulder/back area started hurting again. I've been taking my 800 ibuprofin again which I hadn't used in a month. Also I feel more uncomfortable under my arm and across my chest, even a sharp pain when I cough, which I am doing a little more of again. Tomorrow I go for a CT scan to see what effect the chemo has had. Three weeks ago, I'd have said, the tumors are really disappearing. Today I am worried that it is growing. I'll let you know. I've had 3 carbo/taxol chemo treatments so far, just one a month. 3 more were scheduled. I sure hope it is working and nothing new shows!!!!!! The tumor is pressing a nerve bundle near my shoulder blade area. This has caused me to sweat on only one side of my body, and my whole underarm has a kind of numb feeling, including in the underarm area of my chest. I think I'll hear results on Tuesday.

daisy366's picture
daisy366
Posts: 1493
Joined: Mar 2009

Thanks for the update. I will be thinking of you and praying that you continue to respond well to treatment.

Keep us posted. Hugs, Mary Ann

Karenhopeful
Posts: 38
Joined: Jan 2012

My ct showed all three tumors with mild regression - good news.
However, it showed a small new growth in the area of regression - not so good.
Cancer had invaded a bone near the tumor a half an inch, no other cancer in bones according to bone scan.
I go tomorrow to consult with radiologist. According to my oncologist only 3-10 zaps will be needed, they will be less invasive than after my hysterectomy and have less side effects. I'll also get a bone strengthener added to my chemo concoction. I'll get my 4th chemo this Thursday. We will do #4 and #5 and then a ct scan to see if they have reduced enough for surgery. Thoracic surgeon says they must be under 2cm and are currently about 4.8 (down from 7.8) If not, I suppose we go ahead with #6 as planned and maybe more?? Don't really know.
Unfortunately, I am in a lot more pain. My shoulder back area are aching all the time, I am sore to throbing in my underarm between elbow and shoulder, my arm pit and often one side of my breast in that area are very uncomfortable. My oncologist thinks it might relate to cancer in the bone. She did give me a new medication to quiet the nerves that are poking me with needle like jabs. I thought it was helping, but I was hurting so much I also started taking my ibuprofin along with the nerve medication and don't feel comfortable at all.Near tears sometimes - well that could be the medication cause it can cause depression. I'm trying so hard not to be depressed and think positive. I am almost ready to try the narcodin, with a narcotic. I didn't want to use it, but I hate hurting. I'll try to remember to post what the radiologist says tomorrow.

Karenhopeful
Posts: 38
Joined: Jan 2012

Other good news from the ct scan was that it was not in any new places like kidney, liver, pancreas, neck tissues, and the lymph nodes that had lit up before did not light up this time.

SedonaStardust
Posts: 1
Joined: May 2012

What a great current forum...my thanks to all of you for your honesty and courage! I too had uterine cancer for which I underwent a total hysterectomy late Dec. 2011 (S3G1) Recommendation after healing was a combination of chemo/radiation. I opted for radiation and completed 25 sessions mid April. In the past 3 weeks, a CT scan and lung biopsy have been diagnosed as uterine cancer mets to right lung. Recommendation is chemotherapy--which I am scheduling asap.

My reason for posting tonight is in response to several comments in the last 10 or so posts. Numbness and tingling can be a common side effect of chemotherapy...I've already been warned by my chemo consult that I will more than likely experience this myself. To Mdotsie47--you inquired about pro-biotics. (Lactobacillin/Acidophilus) What they are is a "good" bacteria that would normally exist in our upper and lower intestine that helps digest our food and provides balance. Whenever we ingest antibiotics such as amoxicillin and certainly radiation and chemo--it kills all those "good" guys off, often resulting in diarrhea. I took them continually during my radiation. They are easily found anywhere wherever supplements are sold, and VERY inexpensive. (Another new source I've just found is Vitacost.com (in USA) with free shipping on $25. of their product...their prices are very competitive, and I don't normally recommend anybody) I also suffer from many aches and severe pains in my back and shoulder areas--for me, much of it is brought on my all the stress and anxiety most of us are experiencing, though much can also be due to actual physical reasons. I cannot express how important getting some bodywork done can be--be it massage or acupuncture. If you live in a large city, you might be lucky enough to have a local massage school which can offer double the time for 1/4 to 1/2 the price--plus specials. If not, Google massage therapists in your town and find out who offers what. I don't think that if ever in our lives, it is more important to pamper our bodies then right now going through this...and I am one broke little puppy. Throw in some meditation or guided imagery while you are on the table. Yes, I am having to deal with mainstream medicine, but I am also supplementing it with any alternative healing aspect that intuitively feels right to me. Bless all here and let's take it one day at a time ...Hugs, Sedona

Karenhopeful
Posts: 38
Joined: Jan 2012

She was very straight forward, no sugar coatings as I think I've been getting with my oncologist. Radiation is only palliative: cancer won't be cured but maybe I can feel better living with it. Doubtful that there would ever be any surgery since there are 4 separate places. Yes this is stage 4 grade 3. My oncologist only said figo 3- maybe to make me think I had a chance at a longer survival??. I also saw some reports that said it started at 9.9 cm - I never saw these or heard this information before! The rib cancer probably was caused by the tumor abutting it not through cells in the blood. The rib also has a fracture! She reccommends treating all the soft tissue in the area of the bone cancer at the same time, 15-20 treatments. As compared to my oncologist who said just 3 little zaps on that little spot. She said if she just did 3 small zaps to the bone, she probably could not go in later to do the tumor around it. The tumor is curling toward my top 4 vertebrae and she would like to stop it from getting there as I could become paralyzed if it wraps those nerves too tightly. It is around the nerves of at least one rib and those nerves along with the bundle in my shoulder are probably causeing all my pain. She thinks the small tingles in my fingertips may be neuropathy from the chemo, that the horners syndrome would affect just the little finger and ring finger. She said I definitely have horners syndrome sypmtoms. The radiation will cause a burn on my shoulder and ulcers in my esophagus- oh, it is also pressing against my esophagus. She suggested a mood enhancer drug. I didn't take my 2 pain pills last night or today, and don't feel any worse or any better. Not going to take those anymore. I might start the narcoden. Good suggestion about massage or accupuncture and the probiotics. I think yogurt may be a favorite food in the near future. Easy to swallow and mild. My mind is not in a happy place today. Maybe I need the mood enhancers.

barbakamom
Posts: 14
Joined: Jan 2012

Hello again,
I have not posted for the past three months, so thought I would update you on my situation. I am just recovering from having a "completion pneumonectomy" on my left lung in which the recurrence there necessitated my entire left lung be removed. In my situation, my bone marrow results keep me from being able to tolerate chemotherapy, so that's a big scary disappointment. But, in my favor, my doctors think I may be experiencing "oligometastases" with mets just to the lung, so if we can get it controlled there, the prognosis is a little rosier. Guess I was fortunate to have a healthy right lung that allowed me to get approved for this surgery. If anyone else has experienced a pneumonectomy or an inability to tolerate chemo, I would appreciate hearing from you!

Prayers to all who are fighting this terrible disease,
Barbara

Karenhopeful
Posts: 38
Joined: Jan 2012

Had a brain MRI just as a precaution. It showed a small bb sized shadow.It may or may not be cancer. I have no symptoms. We are going to watch and see what it does. (I am not real worried as my husband has had an abnormal shadow on his lung for 8 years. Maybe my shadow will do the same.) In the meantime, I have had 4 out 6 chemo treatments and 5 out of 15 radiation treatments on my back, shoulder, neck, backbone, rib area on my right side where I have the pains. It has lessened the back pain almost completely, but my underarm and arm pit continue to have hyper active or numb?? nerves. I feel like I have been burned and my skin is just raw- not from radiation - it has been this way for a long time now. Once in a while my muscle will even throb. I tried taking a nerve pill and ibuprofin but it did't seem to help after the first few days. Now I just sit still in a comfortable position so they don't touch my clothes and don't hurt. I have very low energy, especially since starting the radiation. Not doing housework, very little cooking, very little walking to shop.

Barbakamom, I hope the removal of your left lung does solve your problems. My doctor told me my grade 3 cells are going wherever they want, they are not as controlable or predictable as grade one and two. I have tumors at the top of both lungs, I rather doubt it will ever be operable, not to mention a small tumor in abdomen, rib bone, brain?? Still, if it could be reduced and not spread anymore, maybe it will be possible. How is it after lung surgery? I've heard it is a bad surgery.

By the way Mdotsie47 posted on another forum. She has a lot of body pain from her chemo.

Mosie
Posts: 16
Joined: Jun 2012

It has been three months since my last treatment and i have heard it takes up to a year to feel your self again.When you think about having chemo through you,its alot for your body to adjust to.I feel tired,short of breath,cant walk nearly as far as before.Its hard to enjoy some things you use to because you feel tired and its hard to concentrate, at least this is my experience so far.Its not horrible just going to take some getting used to. Has anyone has weight gain instead of weight loss??? Thanks for being here Mosie

Mosie
Posts: 16
Joined: Jun 2012

I think someone put on here to get a massage ,i heard you shouldnt have that done when you have a serious illness.Just incase id check it out first.

Mosie
Posts: 16
Joined: Jun 2012

I think someone put on here to get a massage ,i heard you shouldnt have that done when you have a serious illness.Just incase id check it out first.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network