Thank you Kris for the response. I am fairly certain Mayo clinic Rochester Minnesota has my resected liver. My lymph node on my last PET is scored less than 4, which means no gemox for now. I responded well to the first course, so hopefully i would respond to a second course. The biopsy could be tricky. The lymph is a mediastinal and is close to my heart and esophagus so my cardio thoracic surgeon thinks it would be a difficult one to biopsy. I have a very small nodual on my right side that is sub pleural and probably would be easier to biopsy. Kind of playing the waiting game for now and making a game plan.

Hi all,

It has been a long time since I have posted. I finished 6 months of gemox and erbitux and I have been on maintenance erbitux since  February 2014. My latest PET scan shows an increase in uptake on a previous lymph mode which had not been lighting up at all since stopping chemo. I am going to have a repeat PET scan on July 30th. If my next PET is worse the plan is to restart the gemox and continue with the erbitux or find a clinical trial. I live in North Dakota USA. There is so many clinical trials out there can anybody point me into the right direction to look for a clinical trial that would fit me?

Initial diagnosis was September 2010 with a liver resection and "clean" margins, followed by 6 months of gem-cis. Metastasis to right lung in October 2011 with a thoracotomy and wedge resection and 4 months of oral Xeloda. Metastasis to left lung with SBRT in November 2012. Metastasis to mediastinal lymph node with 6 months or gemox and erbitux in later 2013 to 2014. Continuation of the erbitux every other week. 4 or so months of clear PET scans.   

Thanks in advance for the help/advice,

Shari

Hi everybody,

It has been a long time since I have posted anything. I have finished all of my latest chemo course. The last few were tough, but I made it through. I am starting maintenance of just the Erbitux. I had a PET scan and it was awesome. Nothing lite up at all and my oncologist used the word "remission". 
I have been down this road a few times, but praying for the best. He also mentioned looking into clinical trials to keep me in remission, so that is my new path to investigate.

I will update more as I research,
Shari

I promise didn't fall off the map! I have finished 8 cycles of gemzar, oxaliplatin, and erbitux. Other than fatigue things have been tolerable. I had a PET scan and I am continuing to respond to the chemo. Things have been a bit complicated with me coming down with influenza A. So I have taken a couple weeks off of chemo. I am set to start chemo again on Monday. I have 2 months left and am hoping to be done with chemo for a while after that. Wishing all a merry christmas!

Shari

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(26 replies, posted in Introductions!)

Judy,

I'm glad that Arizona is agreeing with you! My PET scans are continuing to improve. Weather here in ND has been cold. I ended up with influenza A a week ago or so, and man did that throw me. I'm feeling much better now. I have been keeping you in my thoughts and prayers. Merry Christmas!

Shari

Hello all,

It's my off week from chemo, but got my erbitux today along with my premeds. So I'm back to the steroid rush and not sleeping. At least it's just one day. It gives me time to read up on the boards and give people my two cents. Third round has been the best yet. Not bad on side effects, just wicked tired by Thursday and over the weekend. Looking forward to my off week. Take care and I will check in with round 4.

Shari

7

(9 replies, posted in General Discussion)

Danna,

I have been on Prozac for 2 years now. It helps me take it all in. If you want to avoid medication it would be best to at minimum talk to a professional. Find someone who will respect your not wanting to take meds. It might take a few tries to find the right person, but keep with it. Don't let cancer define you, it's something you have not who you are! It's okay to have bad days, but if they turn into weeks or months it's time to take control.  You can do it!

Shari

Nat,

Awesome news on a year cancer free! I was 29 when diagnosed and now am 32. I started chemo with gemzar and cisplatin and before starting my oncologist asked about freezing eggs as chemo can cause fertility issues. I'm not sure about what type of chemo you had, but have you asked your onc if you might have problems? My husband and I have made the choice to not have children except for my 2 furry loves of my life. I am now on my third go round with chemo. I hope this helps. Thinking and praying for you.

Shari

Hi all.

I have started round 3 of gemzar, oxaliplatin, and erbitux. The decrease in dosage from round 1 proved to be the trick. Just tired, no bad diarrhea. The erbitux rash is the craziest thing ever. I think I finally found the right combo of topical cream and I started doxycycline today. The itching is under control. Labs are looking good. One more round then a PET to see response. Keep fingers crossed!

Shari

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(6 replies, posted in Chemotherapy)

Hi,

Has anyone ever been on erbitux? Any suggestions for the rash? I have it bad on my legs and under my arm. It is very itchy and can be painful. Trying to use cortisone cream and Benadryl. Thanks.

Shari

My rash has gotten much better. It's starting to dry out and I don't have any new white heads. I am thankful I found an awesome face product to help my skin heal quickly. Keeping my fingers crossed!

12

(3 replies, posted in General Discussion)

In my personal experience my tumor grew fast. I was able to have a resection but my tumor was large (11 x 14) and I have had metastasis 3 times.    If I was in our shoes I would push for resection sooner than later. The smaller the tumor the more likely hood of clean margins and no lymph involvement. Wishing you nothing but the best.

Shari

This week I was able to do round 2 of my treatment. Monday was gemzar and erbitux. Tuesday was oxaliplatin. My onc decreased my doses by 20% and changed my erbitux from every two weeks to weekly to decrease the dose. He was a little baffled that I got such bad diarrhea from the chemo, but we all react differently. He was also a little mad at me that I didn't call him before I ended up in the ER needing fluids. I'm hoping that I can prevent getting so sick this round since now I know how it affects me. I got the lovely "acne-like" rash from the erbitux. I think other people have probably gotten it worse, but at 32 it was the worst breakout I have EVER had. I was blessed with a nice, freckley complextion. I also used Nerium on my face and I think that it really helped keep the rash at bay. The nurses said that the rash gets better. No major hair loss yet, maybe a little thinning. I finally sent my hair I cut off before I started chemo into Pantene beautiful lengths. 9 1/2 inches! I figured if my hair was going to thin I didn't want to wash long strands down the drain. Making the most out of a crappy situation. Hopefully it helps someone who has to lose all their hair. This post is a little rambly, I thank the dexamethasone for that.

All in all doing better and hoping for a good end to my week.

Shari

I'm taking it as a day by day thing with work. They are really understanding. I want to do anything to put cancer behind me, but I want to function too. My plan is to talk to my onc before my next round. Thanks Lainy.

Hi all,

Thanks for all the suggestions. I have had some of the cold sensitivity, but its not to bad. The worst has been the shits, literally, and the nausea. I have the worst cramps and just feel drained. With my last chemos I could at least work, this time I am so tired all I want to do is sleep. I have been taking my zofran and trying to stay hydrated. I hope by next week I will have some spunk back. Laying around isn't my strong suit.

Shari

Lainy . . . I do know about Timex and that is exactly how I feel!

Hi everyone. Here I go again with chemo! I have a mediastinal lymph node and a retro peritoneal lymph node that lite up on my last PET scan. I started gemzar, oxaliplatin, and cetaximab today. Day 1 is gemzar and cetaximab Day 2 is oxaliplatin. A week off and start over. We are going to do 4 cycles (2 months) then another PET scan to see how the lymphs are responding. If I am responding the plan is a total of 12 cycles and oral maintenance.

It has been 3 years since diagnosis. I have had 60 percent of my liver removed, 6 months of IV chemo, part of my right lung removed, 4 months of oral chemo, SBRT of my left upper lung, and now my third time with chemo.

With chemo before I have never lost all of my hair, it just thinned. This time I might lose my hair. I had just grown it out, but was able to cut off 9 inches to donate to Pantene for wigs for cancer patients.

I am having a harder time this go round. I have never felt 'sick' through all of this. I have continued to work full-time and refuse to let cancer define me. I just want to live to see my nieces and nephews and great nieces and nephews grow up. I made the choice not to have children, I just have two little furry puppies that melt my heart. I just want to live! Ok pity party is over! Just needed to say it out loud and get it off my chest in a safe place to people who understand.

I am so lucky to have a great support system of family and friends to help me. Any suggestions on this go round send them my way.

Thanks,
Shari

Hello all,
It has been a long time since I have posted anything on the site I wanted to share my good news. I completed my coarse of Xeloda in march and have had 2 clear scans since then. I am now in the monitoring only phase. It feels so good that for the first time in 2 years I can say that. I want to thank all of those who have helped me get to this point.
Thinking of all of you often,
Shari

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(17 replies, posted in Chemotherapy)

Hi all,

I am just starting to have some of the hand/foot syndrome. I try to remind myself all day long to put lotion on my hands. It can be hard for me because I am a nurse and I wash my hands alot! Its not so bad yet and hopefully it doesn't get worse. I know I will be able to handle all that comes my way. Thanks all.

Shari

Pets have an uncanny sense about things. Odd things can happen when people are close to death. My personal thoughts are spend as much time with him as possible, keep him calm and comfortable and tell time you love him and if he is tired it is okay and you will be okay. I lost my dad in march and that was the hardest thing to do but it gave me closure. My thoughts are with you and your family.
Shari

21

(17 replies, posted in Chemotherapy)

So I am just starting my 2 of 6 cycles of oral xeloda. I take 1650mg twice a day for 14 days with a week off. I haven't had much in the way of nausea, not needing to take any meds. I haven't had any severe diarrhea, which is also good. I noticed that towards the end of my first cycle I got painful hand and feet. Not the red and cracking hands that some people get. I also have a lot of fatigue, much more with this than the gem/cis IV. Wondering if  anybody has any tips to help with side effects. Thanks.
Shari

22

(13 replies, posted in Chemotherapy)

Susie,
I had gem/cis last year with dex, emend and zofran. I only took the nausea cocktail of drugs on my chemo days. The other days post chemo I took oral zofran and that was it, along with iv fluids for 2 days. I did drop my counts with chemo so I was given Neulasta after my 2nd dose in a cycle. It would bring my white counts up, but not as high as yours have gotten. I also tolerated the chemo will with minimal side effects. I was able to work just about full time. I too am a nurse and didn't want to take too much dex cause of the side effects. Good luck with your chemo and thoughts to you.
Shari

23

(13 replies, posted in Chemotherapy)

Lost soul,
I did an 8 cycle course of gem/cis from november 2010 to april 2011. I did have hair thinning, but not complete hair loss. I have heard that nioxin shampoo can help. I did find that the gem/cis was ok to handle. I didn't have much in the way with nausea, but the meds for that are awesome. For me attitude is a key in keeping myself feeling good and I try to keep as normal a routine/life as possible. I am currently doing an oral course of Xeloda and the side effects are effecting me more. Good luck to you and I will keep you in my thoughts.
Shari

24

(14 replies, posted in General Discussion)

Hi all,
It has been almost 7 weeks since my lung surgery. I have been back to work for a few weeks and I am feeling good, but sore by the end of the day.
I did have my CT scan which looked good, nothing big, bad and scary. I had my tissue sent to Mayo where I had my original surgery, and they compared it to my original liver tumor and as expected it is the same. So officially I have mets to the lung. After researching and discussion with my oncologist, I have started a 6 cycle course of Oral Xeloda. I finished the first cycle, and am amazed how tired I get. This seems harder on me than the gem/cis was. But as with that this too will pass and life will go on. My life really is going on as usual, and hopefully this will go fast.
Until next time,
Shari

25

(14 replies, posted in General Discussion)

Hello all,

I have been feeling fairly well since surgery. I have some soreness, especially depending on how much I do, but not too much pain. I ventured out and had supper at the Olive Garden with my brother and his wife. It was nice to get some fresh air.

I have been thinking about what this means for me and this spot removed from my lung. I have a feeling that it might have been there for a while. I first had something show up on my CT scans in February. Unfortunately I did not have a previous chest CT to compare it to as all of my prior scans were of my abdomen and pelvis only. The spot at that time was 4mm and didn't lite up on my PET scan. So I continued with my chemo treatments which I finished up the last week in April. I then had a CT scan in June and things looked status quo with my chest, abdomen and pelvis. I had a really good summer and had my 3 month check up in September. My oncologist is the one that noticed that the spot had doubled in size, still only making the spot 9mm in size. I then had a PET in which this spot lite up, so down the surgery path I went. I am grateful that I was able to have my surgery in Bismarck and didn't have to do any traveling. It is still kinda hard to wrap my head around the spot being cancer. I am glad that it is the same cancer because I don't know how I would handle the idea of it being another primary cancer. And I still think the news is good, they were able to resect it out and get clean margins, and there are no other signs of active tumors in my body right now.
Also of good news, prior to my very first surgery my CA 19-9 was elevated, and after surgery it was normal and it has remained that way even with this latest development.
Thanks to all of you on this website to offer words of encouragement, prayers and good feedback. It is nice to have a sounding board to bounce thoughts and ideas off of, especially those of you who know where I am coming from.

Till next time,
Shari