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NED at 2-1/2 yrs from treatment

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hi! Ladies!!!
I had my 2-1/2yr from treatment check up yesterday at MD Anderson in Houston. All is ok. They did a routine mammogram, chest x-ray, CA 125 (mine is 42.9 and has been around in the lower 40's for a year, stable). They said to come back in 6 months Whoo Hoo!!!

Down side is I have been steadily gaining a few pounds each check up. I now weigh a whopping 167 lbs. Dr. Levenbach said tactfully I need to exercise more. So treadmill here I come. I have a wonderful husband who makes the best homemade ice cream in the world. Sunday night is our ice cream treat night. I just have to limit myself to one scoop instead of a large bowl full. I confess my eating habits are not the best. I have made some good choices due to the wonderful information on this site. I eat a lot more veggies and try to watch my sugar intake. I pop a 500 mg turmeric together with a multiple vitamin each morning.

I applaud those of you who share about your healthy food and lifestyle choices. Your stories inspire and encourage.

I personally feel great, however I know if I get more excercise I will feel even better if I drop some weight.

Love you gals!!! I read this forum each day. You guys are awsome!!!

jazzy1's picture
jazzy1
Posts: 1387
Joined: Mar 2010

That's wonderful news -- congrats! We're both dancing with NED...keep doing what you're doing as seems to be working.

Exercise -- have to admit this activity has been a part of my life from age of 18 years. Always been a runner, weight lifter, etc, etc. Easy for me to keep this going, but might I suggest starting slowly with walking for 15 minutes and every few days add a few minutes. Most people want to jump on the treadmill and do 30 minutes, and the next day so sore they don't do a thing again. Start slowing and allow your body to build up.

Quote from Dr Otto Warburg, Nobel Prize Winner --

"Normal cells have an absolute requirement for oxygen, but cancer cells can live without oxygen. Deprive a cell 35% of its oxygen for 48 hours and it may become cancerous."

Checkout his link below --

http://www.apaviekangen.ro/docs/drwarburg.pdf

Bottom line move and breathe in deep...keep the oxygen going thru the body.

Hugs,
Jan

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

So glad for the reminder. Years ago I would walk daily for 45 minutes. I will start slowly and build up. Thanks for the link. Isn't it wonderful the information available to us.
Hugs right back at you. Wish we lived closer. Years ago I used to walk each evening with a group of gals. It was a lot of fun. Norma

sunflash's picture
sunflash
Posts: 158
Joined: Aug 2011

Congratulations Norma! Ned is a wonderful partner......may you dance with him forever!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Dancing and dancing...

LizGrrr's picture
LizGrrr
Posts: 124
Joined: Nov 2011

Congrats !!!

Liz in Dallas

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Appreciate the encouragement. Hope all is well for you.

Pat51
Posts: 111
Joined: Feb 2011

What great news!! I hope that you will be dancing with NED for a life time!!

I know what you mean about the exercise. I just don't take the time to do as much as I should. By the time that I get home from work and catch up on housework I am exhausted! Therefore, my weight is also increasing. Ugh!! After being so sick when I was on treatment, I am just happy to be here and able to eat. However, I know that I should watch my calorie intake closer.....just easier said than done!

Pat

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I know what you mean about work. Get to work at 7am and leave at 5. By the time I get home and we eat dinner I am famished. I could eat everything in the kitchen.
Easier said than done is right!!!

chachacha
Posts: 25
Joined: Jul 2012

I have recently been diagnosed with serous papillary carcinoma in the wall of my uterus. I am scheduled for surgery on Aug. 2 for a complete hysterectomy. We will then find out the extent of the cancer. Dr. said he is looking for spread. I was diagnosed through a slightly abnormal PAP followed by a biopsy of the endometrium. Can anyone share with me information about early detection? All the doctors seem to think it is early because I have absolutely no symptoms. Am I still facing Chemo? I am frankly a bit worried. I am 62. Thanks

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

I was 63 in 2009 with a PAP showing suspicion of adenocarcinoma. A uterine biopsy confirmed the cancer. I had a TAHBSO (total abdominal hysterectomy with both ovaries and tubes removed – omentum NOT removed). My first pathology report showed adenocarcinoma stage 1B Grade 2, and my gyn-oncologist indicated no further treatment would be needed. Only 9 lymph nodes were removed. None of them contained cancer cells. My pelvic wash was clean, too.

When I returned for my one-month check-up, a new pathology report was waiting. This one showed an additional cancer had been detected – UPSC (uterine papillary serous carcinoma) at stage 1A Grade 3. The gyn-onc VERY STRONGLY recommended that I start chemo within the next 3 weeks.

I went to another state for a second opinion. The gyn-onc there (actively researching UPSC and engaged in ongoing clinical trials for women with UPSC) recommended adding brachytherapy (radiation) of the upper vaginal vault to the chemo. I asked opinions of several other doctors I knew who conferred with still other gyn-oncs both in the U.S. and in Europe. All felt that since I was in such good health with absolutely no cancer symptoms, I should follow the recommendation for both chemo and internal radiation treatment. UPSC is an extremely aggressive and highly recurrent type of uterine cancer.

I completed 6 rounds of Carboplatin/Taxol chemo with 3 rounds of brachytherapy following the first 3 rounds of chemo. Aside from fatigue, some minor peripheral neuropathy, bone pain, and fairly debilitating chemo brain, the chemo and radiation were not too bad. The chemo brain really prevented me from returning to work until a couple months following treatment. The neuropathy peaked 2 or 3 months AFTER my treatment ended. That was a surprise.

I just had another check-up and I remain in remission.

Definitely I hope your UPSC has been caught at an early stage. I am sending you a big hug as you wait for surgery and then wait for the pathology report. Please keep us posted.

Sally

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

I just kept hitting the "post comment" button thinking it hadn't gone through!!

kansasgal's picture
kansasgal
Posts: 117
Joined: Aug 2009

I have copied and pasted this information from the American Cancer Society's website. There is more information about it there. I had never heard of this before I started chemo, and I think most women undergoing chemo for UPSC do not experience it. I noticed it within a week of starting chemo. I felt like Alice falling down the rabbit hole. I had no explanation and thought I was just "very tired" even though I was sleeping well. When I went in for my second round of chemo, I mentioned my mental problems to the nurse. She said, "Oh, that's chemo brain". When I asked her what she meant she just said it was what I had described to her. I could no longer cook unless I stayed right at the range. If I walked away, I would forget that I was cooking until I smelled something burning. Even the smell of something burning did not make me think that I was the one who had left something to burn in the kitchen! I would just go to check on the smell and be surprised! I could not even do laundry unless I sat in a chair in front of the dryer to wait for it to stop. If I went off to do something else, I would walk by hours later and spot a mass of wrinkled clothes sitting there. I experienced all of the problems listed below. Thank goodness I was much better within a couple months of finishing chemo!

From ACS website -

--------------

Here are just a few examples of what patients call chemo brain:

Forgetting things that they usually have no trouble recalling (memory lapses)
Trouble concentrating (they can’t focus on what they’re doing, have a short attention span, may “space out”)
Trouble remembering details like names, dates, and sometimes larger events
Trouble multi-tasking, like answering the phone while cooking, without losing track of one task (they are less able to do more than one thing at a time)
Taking longer to finish things (disorganized, slower thinking and processing)
Trouble remembering common words (unable to find the right words to finish a sentence)

-------------

I surely hope if you decide to pursue chemotherapy that you will NOT experience this!

Sally

chachacha
Posts: 25
Joined: Jul 2012

How awful for you Sally! Thank you for your thorough explanation of "Chemo Brain". I too hope that I don't experience that! I guess I have to take one step at a time. surgery on Thursday. I will keep you posted. It is a relief for me to have you on my corner. Thank you.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

Hello Sally,
I could not have found all the information you gave me anywhere else. I thank you so so much for giving me a road map of what I can expect. My prayers are, of course, that it is early. I will know in just one week. I am not afraid of Chemo . DId your neuropathy go away? I don't understand when you say, "Chemo brain". What is that? I too am in good health and am hoping for the best. Hugs back to you for your comfort and information.

chachacha
Posts: 25
Joined: Jul 2012

I just checked my notes and my doctor has decided to remove my omentum. What are the implications of that? Also, I wanted to tell you how happy I was to read that you are in remission. That is such wonderful news. I also wanted to know what types of tests do they do after the surgery to see if a person is still cancer free? Do you get scanned, or is it just a blood test? I actually thought my doctor would have done a PET scan before surgery, but he said no.

nempark
Posts: 596
Joined: Apr 2010

So sorry that you have to go through this. Early detection is the key to an early stage of cancer, but whatever the case is, medicine is great. In some situation docs do not recommend chemo, but if they do, it is totally doable. Off course you are worried this is all normal. I was dx with Stage 1a grade 3 and my gyn told me no chemo. Second opinion said to be on the safe side chemo. So I did chemo. I did not have much side effects. Chemo is doable.
I am sure surgery is going to be okay, hysterectomy these days are very common and the Docs are really well advanced with the treatments. So hang in there and try not to read too much on the internet. Take someone with you for you Appointments because you will not remember anything. Please keep in touch and may you have a speedy recovery. I pray that our Great God grant you the wisdom and courage to fight this dx courageously and be positive in fighting this battle. Your are not alone. I am also 62. Best wishes -- hoping to hear from you when surgery is over. You can do it be BRAVE.

chachacha
Posts: 25
Joined: Jul 2012

Thank you for your words of support and encouragement. I found your message to be comforting. I am very happy to be hearing from brave women who have gone through what I am about to go through. I am not afraid of Chemo. Surviving is all I am think of. Thank you.

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am not a good one to share about early detection. I waited a long time, even after I had symptoms for years. By the grace of God, I finally went for treatment. By them I was Stage IIIC. I am also 62 yrs young and was not ready to throw in the towel. Went through surgery, chemo, radiation treatment. It was not a walk in the park but, is survivable. What made it livable was a faith that I had God and the best medical treatment avaiable.

Will be thinking of you. Please let us know how you are doing. Norma

nempark
Posts: 596
Joined: Apr 2010

My friend: we are in the same boat. Today, I weighed at the Doc's office and I am exactly like you 167. I am 2-1/2 years ned although I still have pains in my lower belly. I had a ct in March of this year and it was clear. Today, my regular doc told me that I am in danger of becoming a diabetic if I don't watch my weight. So I really do have to get motivated to do something. I was doing fine until my lovely daughter (46) was dx with ALL Leukemia. I was so afraid of her losing her appetite that I ate everything with her and some. She is still undergoing serious intensive Chemo for the last 8 months and I am totally devastated. I am the sole care giver and this is not an easy journey watching your child go through all the chemo she has been having. At the end of July she had a life threatening infection which all the Docs thought that she would not make it. HORROR OF HORRORS. Fortunately, by the Grace of God she pulled through it. I think I did mention this before that we are Jehovah's witnesses and we do not have blood transfusions, we use the alternatives which are available at the hospital where she is being treated. She still have 4 more regimen of multiple chemo because the first set put her in remission and then she had a relapse shortly after. I am praying to God that I keep healthy in order to see my daughter through this. She is also worried about my health. So this is my story. I always keep all of you in my prayers. Love to all and Norma continue being healthy and let us lose some weight together. Your friend June

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

We are twins!!! HAHA!!! I have to make myself exercise more often. My goal is to lose 25-30 lbs for my next visit in 6 months. Have to get with the program. Exercise for me is the key.
I am praying for your daughter. I know God will provide all you need. God is like that.
I like the saying I read the other day. "No need to worry about tomorrow, God is already there."
When I was diagnosed my son had some very serious health problems and my daughter was deployed to Iraq. Those were tough times, very tough. All through it God was there. While I had surgery, radiation (6 weeks in Houston by myself), chemo. I never felt alone. God held my hand and gave me comfort and strength. I know that God will be there for you and your daughter.
Praying for you and trusting in God to see you through.
Hugs, Norma

HellieC's picture
HellieC
Posts: 459
Joined: Nov 2010

So pleased for you, Norma. Long may you continue to be NED. It's the news we all love to hear and share.
Kindest wishes
Helen

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

You are sweet to reply!!! Hugs to you!!! Norma

debrajo's picture
debrajo
Posts: 795
Joined: Sep 2011

Way to go Norma! I'm right behind you(26 months) and "right down the road" in Vidor. Hope your summer has been great! You (all of us) deserve some wonderful time! Best, debrajo

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

You have a great summer too!!!

cheerful
Posts: 127
Joined: Apr 2011

Hi Norma:

Congratulations on remaining cancer free. I know you obviously are thrilled. I hope you remain in remission forever! Glad to hear that you are feeling great.

I saw my oncologist in June for a 4 month check-up and he just did a pelvic exam. Everything was fine.

I go back in October and will need to have blood work and a 6 month cat scan as well after I see my oncologist. I had a cat scan in April and it showed No evidence of disease so I was very happy. MY CA 125 was an 8.

Next month the end of August will be a year since I ended chemo. I started radiation in Sept and was finished in October with everything.

Regarding, the vitamins that's interesting that you take tumeric. I take a multi vitamin, Vitamin C, and Vitamin E along with several medications that I am on for other medical issues.

Good luck with your exercise program. I know I need to do some kind of exercise. I have done some walking the past few weeks. I did lose about 35 lbs over the past couple of years which is great. I still want to lose more weight.

My son lost over 100 lbs. by bike riding in about a year and half's worth of time, and he still bike rides and now it is over three years. He looks great and he just turned 18. He also watches what he eats. He weighs about 150 lbs and is 6 feet tall.

Yes, the women on this support group are awesome and do give wonderful support. I also read the support group posts nearly every day.

Cheerful

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Your son is amazing!!! good for him.
Congrats on the NED....that is wonderful. I always feel so apprehensive before my check ups. When it is done and the doctor says all is ok I feel like I have had pardon til next time. Each visit gets a little easier.

marieinlv
Posts: 40
Joined: Aug 2011

Deciding is most of the battle. I went through the icky, not dealing with stress approtiately phase, still taking it on one decision at a time. I try to excercise more than not. When I do, I feel like a kid again. I love the awesome feeling of going fast on a bike, or walking very fast, whatever we enjoy, thats what we should do. I agree that the oxyogen is free medicine for our body and spirits. Joining with a group of like minded folks who want to get/stay in shape helps me. Weight gain has been an issue with me too, but the muscle loss is alot worse. I went out this morning for a fabulous bike ride, fast, fast, fast. I don't like dissappointing myself when i give in to the excuses, justification... I will "Keep on Truckin".
Go Norma, it really is more fun than not going. =) Marie

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

Hi Marie,

I am watching the Olympics right now and they are showing the bike riding competition. I feel inspired. My husband laughed when I just told him I wanted to get a bike. Maybe a stationary one and I could pop in a tape of scenes of mountains or some really nice places. I am afraid trying to ride a bike on the side of the road here in Texas may be more life threatening than the good it would do. I have a treadmill. Will have to just stop making excuses like you said and start doing. KEEP ON TRUCKING.....

laura25's picture
laura25
Posts: 160
Joined: Mar 2011

So happy 4 you... when I wz first dx your story was my beacon of light. I am 1 year since stopping treatment and feel great. I was stage 3c also, so glad to be back carpooling with the other moms and living life again. Enjoy every minute of this wonderful life!

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I am so glad you are getting back into life. I am happy for you too. ENJOY!!! That is what life is all about. Living it. Each golden moment.

pakb56
Posts: 141
Joined: Jan 2012

For sharing your good news. Hearing it brightens my day these women on this board are awesome and have brought me thru some low times. I will pray for your continued ned.
Take care...pat

norma2's picture
norma2
Posts: 486
Joined: Aug 2009

I appreciate it!! Thinking of you and praying for you.

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