CSN Login
Members Online: 11

40 year old with stage 4 adenocarcinoma - signet ring cell

TR
Posts: 12
Joined: Mar 2013

I am starting a new forum with hopes for some advice and some stories of strength!  My husband has been battling stage four colon cancer since July 2012.  He was only 39 at the time - collapsed due to abdominal pain.  They did an emergenct hemicolectomy - and found that the cancer has spread thru the colon wall and into the abdomen and small intestine area.  There was evidence on the perineal lining as well.  The prognosis was bleak - nothing they could do but try to extend his life with chemotherapy.  He did eight months - with avaston....every two weeks.  He is suffering from severe neuropathy...so bad that he cringes with pain.  He sufferes thru it because his CEA levels went from 37 to under 4 over the eight months.  On jan 18th they stopped chemo in order to prep him for HIPEC surgery in Buffalo NY.  We felt blessed, and thrilled, to have this opportunity.  They told him he needed to be off chemo for 6-8 weeks and do a laperoscopy first.  The laperoscopy was done on Feb 19th - and it looked good.  They confirmed HIPEC for March 21st.  We went to Buffalo for a pre-op on March 12th and they cancelled the surgery.  The past scan showed that the cancer had spread - and in a two week time frame CEA was back up to 13.  Devstated - we left and went home.  They told us to go back on chemo immediately - try another 4 or five rounds and see if the cancer stops growing...and if the tumors shrink.  Perhaps they will re-visit the idea of the HIPEC then???  I dont know how to help him get through this ....his hope is gone.  I need something to spark him again.  We have four children...13,11, 7, and 6 years of age.  I am so scared for them and for what comes next.

TR

jen2012
Posts: 1204
Joined: Aug 2012

Im sorry they couldnt do hipec. I can understand his disappointment and your fear. Other folks will come along with advice...i just wanted to offer support.

abrub's picture
abrub
Posts: 1531
Joined: Mar 2010

I assume you go to Roswell Park.  They are among the best, and know these cancers well.  I say "these" because mine is a rare appendix cancer, and while I wasn't treated at Roswell (I went to Memorial Sloan Kettering) I do know that they are among the very few places in the country with excellent experience with HIPEC, which is a standard of care for appendix cancer.

Hang in there, work with your drs.  I know it is terrifying, but hopefully, you can get this beaten.

By the way, other centers for this type of treatment (or related - MSK doesn't do HIPEC, they do a series of IP treatments) would be MSK (Dr. Nash, Dr. Paty, Dr. Guillem), UPMC - Dr. Bartlett, in Worcester, Mass - Dr. Laura Lambert.

Wishing a healthy outcome for your husband and family,

Alice

TR
Posts: 12
Joined: Mar 2013

Thanks for your post Alice.  Please tell me how the operation was for you?  How r u feeling now?  I have yet to connect with someone who has been through HIPEC....I hope it was successful for you.

TR

Chelsea71
Posts: 1170
Joined: Sep 2012

I don't know what to say. My husband has stage four, as well. Had HIPEC one year ago in Montreal. I understand your disappointment and desperation. Unfortunately, I don't have much advise to offer. I would visit other hospitals that specialize in HIPEC. I wouldn't rule it out. Good luck.

Chelsea

TR
Posts: 12
Joined: Mar 2013

Thanks for your post.  I had heard that HIPEC was being offered in Montreal.  Please tell me how your husband is doing....I am hoping that the surgery was positive for him?

TR

Chelsea71
Posts: 1170
Joined: Sep 2012

The surgery went well. Ten hours. Able to achieve a complete cytoreduction. Pathology report indicated no lymph node involvement. Surgeon was positive. Scan four month later. Liver metastasis. Otherwise, peritoneal cavity is still good (as far as we know). Hopefully he will have a liver resection in a couple months. The surgeon was Dr. Lucas Sideris. Loved him. Big recovery. Didn't develop any complications. Would do it again if we had to. Four weeks passed between last chemo and surgery. They wanted to do it two weeks after chemo but the surgery got bumped by a higher priority situation. PM me if you have any specific questions.

Chelsea

TR
Posts: 12
Joined: Mar 2013

Thanks for sharing.  I am thinking that they just left him waiting too long for that HIPEC.....eight weeks with this kind of cancer is too much.  Just found out his CEA went to 81.  It was 13 two weeks ago.  I pray that the chemo can get it down again.  I hope that your husbands journey continues on an up-swing.  The liver resection will work!

TR

thxmiker's picture
thxmiker
Posts: 1223
Joined: Oct 2010

Welcome to the forum.  We are sending our thoughts and prayers for a positive outome.

 

Nutrition and Hydration are going to help a lot!  Keep eating no matter how he feels. Bananas, atmeal cookis, Ginger snaps got me through a lot of tough times. I added Juicing to get the added nutrition that I was missing. We eat Med Diet, Juice, and add supplements. Then I was able to icrease my exercise.  I am in better shape thant when I started my cancer journey. Mine was caught a week before my 43rd bithday.  Now, rolling up on 50 and waiting for HIPEC in San Diego.  

 

Keep fighting the good fight!

 

Best Always,  mike

TR
Posts: 12
Joined: Mar 2013

I hope that you get that HIPEC!!  Please keep us posted - you have been through a lot.....thanks for the advice.  We are in agreement with all the dietary things you mentioned. 

TR

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I also have signet ring...I was 45 when dx in June of 2012.  My husband and i have 2 children...ages 10 & 12.  I had a rt heicolectomy and the appendix removed...clear margin ... It was within 1mm or 2 of going outside the colon.  I also had 4 of 18 nodes involved.  I was staged at a 3b. I started chemo in July...did 6 months of FOLFOX6. i have issues with the neuropathy...they put me on Neurontin...I wound up with elevated liver levels.  I am not taking anything for the neuropathy right now...except for at night I slather on Ben Gay on my feet and hands and it calms the pain so that I can sleep.  I don't smell particularly sexy with that stuff on but it does help.  I have been having back pain for the last month...had X-rays done and they didn't really find anything.  I had my onc appt yesterday and the dr is concerned about the combination of the back pain and my rising CEA.  I am waiting right now for the hospital scheduling dept to call me to set up a CT scan for probably tomorrow or Monday.  Depending upon what they find I might also need an MRI.  My dr still thinks that they got all of the active growth in the surgery but the rising CEA is concerning.   It is now higher than just after my surgery.  I am in Northern Virginia and have been in contact with Dr Sugarbaker's office...he is the HIPEC expert and is in Washington DC...but because of medical insurance I may not be able to see him.  I have other options...there are 3 doctors with extensive HIPEC surgery experience in Baltimore And there is 1 at Wakeforest which is also doable.

i will keep your husband in my thoughts and prayers.

alex

TR
Posts: 12
Joined: Mar 2013

Alex - your situation sounds very similar to my husbands.  Thanks for the "Ben Gay" idea - I will try that for him.  Please let us know how your scans go.....I am hoping that all goes in the right direction for you.  The doctor that we were referred to is in Buffalo - at Roswell - his name is Dr. Kane.

Stay strong for your children - they need you!

 

TR

Maxiecat's picture
Maxiecat
Posts: 524
Joined: Jul 2012

I am now in the waiting game with the CT scan...I had it done yesterday afternoon ... So hopefully I will hear something today or tomorrow.  I spoke to my nurse case mgr ... She recommends going to one of the cancer centers of excellence ... Specifically MD Anderson.  She has had several patients that have had very good outcomes with HIPEC and treatment from Dr Mansfield's team.  We had been thinking about Johns Hopkins or the University of MD...just because of location...both are a little over an hours drive....we are in Virginia.  I am looking into all 3 institutions ...I still need to find out if my local oncologiswikis willing to follow another treatment facility's protocol...I don't have a good feeling about him being receptive to it...but you never know until you ask.  From what I have read...there is some chemo after the HIPEC procedure.  The travel is not covered by my insurance...so multiple trips to Houston might be a little difficult for us.

 

I feel so bad for my kids sometimes...like they are being robbed of part of their childhood.  We had Spring Break last week...we didn't go anywhere or do much because I was not feeling well and we could not go away because of the Drs appointment and CT scan.  They are back to school today and I already miss them.

alex

TR
Posts: 12
Joined: Mar 2013

Alex  - I feel so bad for my kids too.  We did nothing on our March Break but take them to Buffalo with us - when we got the bad news that their dad couldn'thave the surgery.  All they see is him sitting and sleeping - and my patience is so low.  sometimes they see me cry and they come to hug me....they try to comfort me which is unbelievable.  I lost it today - I yelled at everyone - including my husband.....soem days are just harder than others.  When you feel like you can - just hug them tight and tell them that you dont want to be sick - and that you love them.

 

TR

marbleotis's picture
marbleotis
Posts: 491
Joined: Mar 2012

TR,

I too am signet cell.  Was dx'ed Jan 13, 2012 with colon cancer 3 B with 3 nodes out of 19, and had rt hemicolon surgery 1/31/12.  Followed by 6 months of Oxpl and 5FU.  I was dinconnected August 24, 2012.  I have had 2 clear ct scans since then, small polyp removed this past Jan (non cancer) and my CEA is great.  In addition, and since I had the polyp situation, I had the genetic tests for Lynch.  Was done initially with tumor at surgery but with the polyp, my Onc suggested.  It came back negative for Lynch, again.

I was 49 at Dx.

I have neuropathy.  It was in hands, feet, face, lips, teeth and tongue.  Yikes!  But now 6 months later it is only slightly in hands/feet.  I have tried to stay very active.  What really helped with the neurpoathy was embroidery, since I also love to sew.  I would bring to the chemo treatments.  I do not know if your husband would like, but it really helped.

I eat better then ever before with a mediterrian(spelling??) diet and organic.

I have been told "signet" = rare.  My Onc says less common, yet they are seeing alot more often now.  I see it as aggressive.  But remember all cancer is aggressive, because of what it does to us.

I would get a 2nd and 3rd opinion.

I never stop asking questions!

Best of luck and keep us posted.

 

TR
Posts: 12
Joined: Mar 2013

your story is the best I have heard so far!  I am so happy to hear you are doing so well.  I wish you continued good health and all the happiness that life can bring.  I think my husbands cancer was detected too late....it is spreading very quickly.  I will try to keep strong and hopeful.

 

TR

marbleotis's picture
marbleotis
Posts: 491
Joined: Mar 2012

I know it is hard, I mean I really know it is hard.  Get more opinions.  My cancer buddy was stage 4 with mets to liver.  She had rt hemicol, 65% liver recet and 6 months of chemo.  TR - that was 12 years ago.  Her kids were very small.  She gave me strenth!!  Do not let your husband give up.  There are alot of options.  Get all of them and decide what makes sense for your family.  Please let us know how he is doing.  This forum will be a good source for you.

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I don't have any experience with hipec but wanted to give my support. I was diagnosed stage IV in Nov.2011 and have 5 children. The spark will come from your precious children and from knowing you and the children need him. Just do everything the doctors suggest, and that may mean a second opinion, and fight. When things seemed bleak to me I would look into the eyes of my children and it would give me strength. He is at a hard place right now and I am sure you feel totally overwhelmed ....take baby steps. For his neorapathy my doctor gave me Lyrica, helps a little but mine is bad also. I know you are scared because it is scary....especially with 4 young children, but iit is a time when you have to be strong, and hopefully somewhere down the road he will be strong and hopeful again. Last spring I missed all my son"s baseball games...last fall I went to all of his football games and so far all his baseball games this spring. I know I am rambling, sorry but I want you to have hope and know it can get better. I am still in treatment, chemo and radiation, but happily functioning. Thinking of you and sending positive thoughts your way....~ Ann

TR
Posts: 12
Joined: Mar 2013

thanks for telling me that you are a mom of five.  God love u....I am happy that you are functioning well.  Please keep me posted - my husband has not recieved any radiation - just chemo.  Its the stage four that scares me.....today he was offered Lyrica....but I dont think he will take it.  He is afriad of side effects and because they told him it is used as an anti-depression as well.  As soon as he heard that - I knew he would avoid it.  He is so stubborn and proud.  I want him to take it - it is so hard to see someone you love in pain.

TR

AnnLouise's picture
AnnLouise
Posts: 276
Joined: Mar 2013

I am not a doctor but I don't think Lyrica is used as an antidepressant, The doctors wanted me to also go on an antidepressant because they can help neuropathy, in addition to the Lyrica. I don't do well on antidepressants so that was not an option for me. Look up Lyrica on the internet and then have him make an educated decision, because it really may help him. Another option is physical therapy. It doesn't make the neorapathy go away but helps with muscle tone. You guys are at a hard place right now...try and take one day at a time, then maybe it will be one week at a time, then months and of course what we would all like is years' This is my first radiation....been on chemos, liver resection, SIRT, and now chemo and radiation. Today I left radiation and went straight to my sons baseball game......the sparkle in his eyes when he saw me there, gives me hope. I am also stage IV, mets to liver(gone for now!), mets to lung (working on that) and to abdominal wall(working on that too). Hope things get better for you and it is hard to watch someone you love go through this. Any questions, anytime, please post or email me.....~Ann

annalexandria's picture
annalexandria
Posts: 2252
Joined: Oct 2011

It's devastating to find out you have cancer in the first place, and then to get your hopes up for a procedure, only to be told it can't happen just yet...that is very, very hard.  But the key here, I think, that there is still hope.  If your DH can get through more chemo, it sounds like his docs will try to get him back to a place where he can have HIPEC.  And that procedure has helped many patients.

It might be a good time to get a 2nd opinion. Sounds like you've got good docs, but it never hurts to have a second set of eyes on things, especially when it's a more complicated case.  

Pls. keep us posted on how things are going.  And try to take care of yourself as best you can.  I have three kids myself, and I know it was pretty overwhelming for my husband as my caregiver, trying to juggle everything.  Sending hugs and strength your way~Ann Alexandria

Tre R
Posts: 1
Joined: May 2014

My wife is 32 has signet ring cell stage 4. Havnt seen any recent updates on the forum?

Trubrit's picture
Trubrit
Posts: 1474
Joined: Jan 2013

I am sorry to hear about your wife, and so very young. You have arrived at the right place, but may I suggest you start a new thread, introduce yourself and tell us a bit about your wifes diagnosis and any treatments she may have had. That way, people will be able to reply to you directly and not through someone elses thread. 

You will find so much information and support for yourself and your wife as you work your way through this journey. 

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