Husband dx last yr-now?shadow CT/small spot near liver-help

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Husband dx last yr-now?shadow CT/small spot near liver-help

by axa2008 on Tue Sep 15, 2009 12:00 AM

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I have followed this board for just about a year now since my world was turned upside down.  Long story short, husband had rectal bleeding off/on for several years.  His dr. told him it was hemorrhoids.  I never questioned it as men are very private about their rears.  We got married in June 2008 and I told him since he was now my husband (age 42) he would get a colonosopy done, which he did.  I was not surprised when they told me because I had a gut feeling something was wrong.  They found a mass, a large polyp w/ severe dysplasia and a non-cancerous polyp.  He had 1/3 of his colon (transverse colectomy) removed in October during which the dr. removed his appendix while he was in there.  He said he didn't need it and could perhaps save him from having it removed in the future.  Turns out the appendix had a 3-4mm carinoid tumor present in the tip of it. With this first biopsy from his surgery they could only find 3 lymph  nodes which were negative and further exploration they found a total of 9 negative.  Due to the small number of lymph nodes found they couldn't safely say stage IIa, but could be a stage IIb. The tumor went thru the muscular wall, but not to surrounding fat. The dr. gave him the option of doing nothing other than close monitoring or chemo which at stage 2 really showed no difference  w or w/out chemo.  I begged him to do the chemo along w/ the recommendation of many others incl. our primary care dr.-a breast cancer pt. herself.  After recovering from surgery in late December he started 6 mos. of chemo w/ 5 -FU and Oxyplatin (sp?).  Once every two weeks, but due to low platelets and white blood counts he was bumped up several times.  He was given injections of Neulasta and Neupogen.  Other than neuropothy which still bothers him, he handled the chemo very well.  He developed a rather large hernia due to the surgery which they were unable to do laproscopically.  He had a repeat colonoscopy late Aug-they found 4 very small polyps-dr. said not worried as they were very small-he biopsied-haven't asked for results (not on my list of priorities at moment).  He also did a CT scan two days later-results showed a spot on the liver and a shadowing which the surgeon said is in the area of the momentum.  So hernia surgery is on hold.  Did a pet-scan last week and were schedule for liver biopsy.  Turns out the small spot that was on liver isn't on liver ?on top, perhaps omentum and it is so small they cannot biopsy it. However, he is going for biopsy of omentum tomorrow morning.  I haven't asked for the result of the Pet-scan yet, as we see oncologist on Monday and the surgeon on Wed of next week.  I can only handle so much bad news.  I figure we will get the whole scoop then.  The surgeon ordered the Pet-scan so that when he operates on my husband he will be prepared as much as possible by what  the tests show and said this will help w/ any surprises.  He said there could still be a surprise going in to operate on him, but he would be better prepared for the action to take. He plans on operating to fix hernia and remove any cancer.  My husband is ticked that 6 months of chemo and they find this.  The surgeon said he did the right thing w/o the chemo he could have larger tumors everywhere.  Thiough we don't know what the whole story yet-I am wondering from anyone with some professional experience, what should I be doing next.  Should I hold off on this surgery and go somewhere else for a second opinion.  I have heard of surgery where they flood the abdominal cavity w/ chemo drugs.  I want to give him the best option of beating this if possible or at least prolonging his life. We have a 15 year old daughter who is unaware of the latest findings.  She handled everything well before because he never looked sick or got ill.  He has had many family members die of cancer and I am worried sick about my daughter getting this someday.  When I look back at what could have caused this in my husband I can see some of the risks-sedentary life-style, he had put on 30 lbs., loved his red meat, no fruits/vegs, likes beer w/ his buddies.  Funny, in December of 2008 he started the P90X workout program w/ Tony Horton after years of my nagging him.  He was in the best shape of his life-lost 30 lbs, had abs for the first time since I had known him (17 years now) and I think that helped him w/ the chemo.  His first two months of chemo he was exercising like mad and the dr. couldn't believe he felt no side effects.  After two months, the exercising stopped and now he can't due to the hernia.  I appreciate any feedback as I am lost and there is so much information out there.

My thoughts and prayers go out to all of you who are battling this or have someone close to you that is.

RE: Husband dx last yr-now?shadow CT/small spot near liver-help

by barbrob on Tue Sep 15, 2009 12:00 AM

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 HI,

  So sorry to hear your news and what you are all going through, It is so hard,  but at this present time you have to have clear head and follow what the  Drs are saying, Its a very hard road and You are not alone and thousands are on it with you.

  Make sure you ask as many questions as you can, also you can get reports of all the work that has being done, I.E Blood reports and scan reports... What is his  CEA  count??

 Be Positive ...and Pray and always think the best and live each day one day at a time ...

 Praying  for you  all......

RE: Husband dx last yr-now?shadow CT/small spot near liver-help

by robertpa on Thu Sep 17, 2009 12:00 AM

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This sound a little similar to my case.  I started in 2007 the body for life program for approximately 2 years and would say in the best shape in my life.  I was running three miles a day and benching over 350lbs during my weight lifting workouts.  I was eating healthly (greens, beans and fish). 

Although, prior to this new healthy change in my life I was eating lots of red meats and sugar products.  I had my first colonoscopy at the age of 37 and several polyps were removed and I was instructed to have a follow up colonoscopy every year.  I did follow the instructions and had my yearly colonoscopy.  Well,  after the third colonoscopy a mass was observed in the colon and a resection was preformed two weeks after the colonoscopy at the local county hospital.  Everything went well and half my colon was resected and they staged me at stage I at the age of 40.  My oncolgist stated I would not have to undergo any chemo treatment because of my low stage level.  What a mistake on their part do to the fact it spread to my liver four years later.  Now I am dealing with stage IV colon mastic liver cancer. 

 I began folfox/avastin treatments in Jan 2009 and after 9 treatments I was informed that the two cancer spots on each side of my liver may now be resected.  Although,  I have no feeling in my hands or in both legs from the knees down as a result of the oxiplatinum side effect. 

The liver was resected and 25% was removed from both sides.  This is a very complexed procedure and was conducted at one of the top hospitals in the county.  It is very important in your hospital decission when dealing with cancer operations.  Just think while the surgeon is removing the cancer if one little cell breaks away its going to mastitis somewhere else(blood, lymph nodes, organs).  One month after the surgery, I began chemo again but I'm not getting the oxplatium do to the neuropathy side effects.   The new treatment is folfiri instead of folfox.  Three treatments completed and hopefully only three more to go.

 Please select the right surgeon and the right hospital for the procedure it may impact if the cancer is contained and cured.

RE: Husband dx last yr-now?shadow CT/small spot near liver-help

by axa2008k on Sat Sep 19, 2009 12:00 AM

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Thank you Robert for taking the time to respond.  This forum is giving me trouble, so I had to set up a new screen name for some reason my old wouldn't register.  Your case is so frightening that you did do yearly colonoscopies and they found a mass a year later after a colonoscopy was done.  My husband didn't want the chemo and the dr. said he'd monitor him and didn't need to do it.  Everyone we spoke to said to do the chemo-cancer was so unpredictable.  I mentioned to my husband the other day about your suggestion to go to a better hospital-he was not happy that I sprung this on him.  He is comfortable w/ his surgeon and likes him. I told him I wondered if we had gone to a different hospital/surgeon someone more experienced on a daily basis if we may have been able to avoid what we may be facing.  I told him I would like to go to Johns Hopkins as that is about 2 hours away and doable as we have a 15 year old at home and in school and we both work.  After a bit of disagreement, I walked away in tears.  I tried to explain to him that I want the best for him.  I asked him what he would do if the shoe were on the other foot, he said he would let me decide and do what I wanted.  I feel I should step back and let him make the choices, but I am more agressive and not laid back like he is.  I am not ready to lose him anytime soon and I can't get him to understand that that the best treatment may not be here at home.  He has now agreed that after our two appts. this week w/ the oncologist and the surgeon that depending on what they have found out with his biopsy he will agree on a second opinion.  For him, I guess the fear of new drs., not close to home and he's worried he wouldn't like the drs.  He is very quiet and keeps things to himself, always has.  In fact, after Patrick Swayze's death he said his obituary will not say that he lost his battle w/ cancer.  He said I am not battling anything.  I am trying like mad to get him to eat totally healthy and stay away from the beer, which is occasional w/ the buddies on the weekend during golf.  He says everything in moderation.  If it were me who were diagnosed, you can bet your butt I would stay away from all of the no-nos-which I pretty much do anyhow. He got on the exercise bike for the first time in many months today.  Other than playing golf on weekends and mowing the lawn there is no physical activity-desk job.  I know that exercise is so important, but with his hernia exercise is difficult.  I know he is tired of me being a nag, but I am only doing it to stay on top of things-it is the only thing I have control of.  It has been a pretty stress free weekend not thinking about what the beginning of the week will bring. 

Thanks again,

Kris

RE: Husband dx last yr-now?shadow CT/small spot near liver-help

by axa2008k on Sat Sep 19, 2009 12:00 AM

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Robert-Another note-regarding the neuropathy.  My husband still cannot feel with his finger tips. He can't sense hot or cold and has burnt his fingertips due to this.  His doses of the oxiplatin were reduced a number of times because of this. I know he will refuse any further meds. that will cause neuropathy and from reading all of the stories where people cannot feel anything and it hasn't gone away I can see why he would refuse.

RE: Husband dx last yr-now?shadow CT/small spot near liver-help

by ShaddAnn on Thu Sep 24, 2009 12:00 AM

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We went for a 2nd opinion, thank goodness.  And, we liked the Dr. here but after surgery and a 6 month round of FOLFOX, metastases developed.  His plan was to start FOLFIRI but we decided a second opinion was appropriate because of the apprent growth of metastases during/after chemotherapy.  We chose M.D. Anderson in Houston.  They confirmed our doctor's recommendation to start FOLFIRI and do it ASAP, but they also asked for a tissue sample from the original surgery in case there was a drug trial that he might be a candidate for.  

FOLFIRI proved to cause significant side effects and the Dr. took him off it.  About that time M.D. Anderson called his Dr. about the possibility of putting my husband in a new drug trial.  His cancer has a mutated BRAF gene which is very resistant to most chemo, that is why it had continued to grow.

The drug trial is Plexxikon PLX4032 which has completed a successful trial on melanoma and is now being tested on other cancers with the BRAF mutation. 

We learned that his type of cancer was extremely aggressive and there were not any really good treatments.  Without this specialized testing, we would've continued down a chemo path that would likely not have worked.  Instead, he is on a drug trial that holds real hope for his type of cancer.

So, I would say that if you are concerned, a 2nd opinion at a leading colon cancer hospital is appropriate.  They know some things that are not yet in general oncological practice.  It could save his life.

 

 

 

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