Topic: Hello Everyone, New Diagnosis

Good Morning to all from Satellite Beach, Florida

Thank God for this website, I have learned so much in the past few days about this diagnosis.  My husband Greg, 58 years old, was diagnosed on June7th 2011. It was such a horrifying shock!  But I guess it is for everyone, Greg has been in a hospital once in his life, when he was born, and that's it.. Never been sick, and never took a prescription drug for anything..

We are deeply saddened, but not at all going to give up  until the fight is over.. He is refusing chemo right now,  and have chosen to use some radical alternative methods, I know its controversial, but those were his wishes.  it's a bummer but a year ago his best friend was diagnosed with pancreatic cancer, started chemo and was expired within 6 weeks, soooo he's a little hesitant..he wants to be around for at least a little while.. He is becoming progressively weak, using a walker to ambulate, and has more weight than I care to mention.. he is not a surgical candidate, as the cancer is in all lobes of liver.  the lower extremities are swelling up like balloons and he is wearing ted hose to help.. and his abdomen is starting to become hard, he says he is full all the time and can only eat really small portions.  My nursing degree of 20 years never came in so handy.. however is blood work seems to be stable (other than the elevated liver enzymes)  How high can they go???? and vitals signs are perfect..

I am scared that he is declining so quickly, I am 44 years old, we have been married for 17 years and I am not ready to lose him yet..This website has made  me feel so much better knowing all the people who are going through the same events..

Well thank you all  for listening and look forward to getting in on some discussions.

Re: Hello Everyone, New Diagnosis

Hi Jillybean,
I completely understand what you're going through as my mom who has always been extremely healthy, just got diagnosed at age 57.  Her CC also has spread to both lobes of the liver.  We are currently in the process of chemo embolization (strong chemo pushed directly onto the liver and tumor blood supply reduced) with Johns Hopkins Hospital.  What hospital is your husband going to?  Which "radical alternative methods" is he participating in? 

The best things that I learned from this site are to go to a doctor that sees this rare cancer often, do research and come up with a plan that best suites your family, and to get mulitple opinions and never lose hope!  I'm sure the other, more knowledgeable members will chime in soon, but I just wanted to let you know that you are by no means alone in this fight.  Hang in there.

~Katie

Re: Hello Everyone, New Diagnosis

Hey Katielinn,

We started out at md anderson orlando, we had a consult at um sylvester this past week to see if he was a surgical candidate, they said no, and the only thing that md anderson offered was chemo.. I would love to explore the option of chemo immobilization.. please email dr info if possible..

How is your mom doing??   I know its so hard for my children to see their dad in this condition.. I appreciate your kind words and thank you so much for the reply.. talk to you soon!

jill

Re: Hello Everyone, New Diagnosis

MD Anderson only offered chemo?!  That's surprising as that is supposed to be a great hospital.  We go to Dr. Geschwind and his team and absolutely love them.  I really like their approach at Hopkins...you go on a clinic day and talk to numerous members of their team, and each of them takes a lot of time explaining things, answering questions, and giving their treatment recommendation.  Dr. Pawlik (surgeon) also said that my mom is not a surgical candidate (I believe it's due to the metastasis to the other lobe) but they recommended we do this treatment before resorting to the GEM / CIS systemic chemo approach. 

Let me know if you need any other info!  So far, my mom had one round of Chemo Embolization and we go for an MRI in 2 weeks to see how it worked.

Re: Hello Everyone, New Diagnosis

Hello Jillybean, I am very sorry to hear about your husband. He needs to see his Oncologist for his swollen stomach as it could be Aceties which can be drained and he would feel so much better. Not all same name Hospitals are created equal. For instance the top MD Anderson is in Houston and one is opening up in Phoenix next month.  The top Mayo Clinic for CC is in Rochester, MN although the one in Phoenix has come to the top rather quickly now with transplants. For some reason we have not had that much in great reports from some  Florida hospitals. I would gather all his records and send them to somewhere like Mayo in Rochester or Barnes in St. Louis and get a second opinion. Best of luck, remember the main thing is for the Oncologist to get him comfortable!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello Everyone, New Diagnosis

Hello Jilly...welcome to our site.  Jilly, I am also wondering about the "radical treatment" your husband has chosen to fight this cancer with.  Does it consist of a particular diet? 
Regarding the fluid:   I am wondering whether diurectics have been ordered. If your husband is suffering from ascities then yes, nausea and sometimes pain can make things very uncomfortable for him.  He may experience a loss of appetite; sitting, standing, and walking can become restricted and he could become fatigued and lethargic. 
As Lainy has mentioned you would want to make sure that your husband is being treated for comfort control. I would contact his physician.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello Everyone, New Diagnosis

Hi Jillybean!
I also have tumors in all lobes, therefore no surgery. I was diagnosed 16 months ago and still working (nurse in ambulance), running etc. I

No matter whether you think that you can, or that you can´t, you´re right
//Henry Ford

Re: Hello Everyone, New Diagnosis

Hi Jill,

Welcome to the site. Sorry that you had to find us all and I am sorry also to hear about your husband. But I am glad that you have joined us all as you have come to the right place, and you will get a ton of support and help from all of us here. I can't really add anything to what the others have said to you but I wanted to stop by and say hi to you. I agree with what the others have said to you re comfort and getting your husband seen by a doctor here. My dad had many of the symptoms that that your husband has now and there are things that can be done for this to help with his comfort. Keep coming back here, we know what you are going through right now and we care.

My best wishes to you and your husband,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello Everyone, New Diagnosis

Thanks for the responses everyone, I made an appt with oncologist today regarding the fluid..thanks lainy for the hospital advice, you all are a world of resources..

Re: Hello Everyone, New Diagnosis

Hi,Jillybean,
I am a CC patient for the past 2 years.
If you can,please let your husband know that alternative therapies such as massage,spiritual healing,relaxation techniques,Yoga and meditation,guided imagery and hydrotherapy,vitamins and supplements ,nutrition and diet will work up to a limited extent;and at this stage of the game for your husband,(my guest is stage 3 if no metastasis to other parts of the body ),it will take time to separate and choose the ones that fit your husband the best.
He is only 58 years old;even though he is weak and may have ascites;Chemo therapy will offer the best hope for him.Nowadays,chemo medications and much better than just 5 years ago  in terms of outcome and control of side effects.
The responses to chemo therapy for each patient are different;your husband has CC and his friend had pancreatic cancer;the treatment plans are different. In terms of treatment,for example Pancreatic Ca requires  weekly Gemzar for 7 weeks in a row as mono therapy but  for CC ,it only requires weekly Gemzar weekly for 3 weeks in a row and rest for 1 week;much easier to take.;and the side effects are very little if any.I took Gemzar for 14 months and I should know.
I will encourage him to take chemo as soon as possible as suggested by your doctor while you and your husband search for alternative .
The oncologist will prescribe Lasix or Aldactone for your husband's ascites which is  needed to take care of as soon as possible.
God bless.

Please know that my personal opinion is not intended nor implied to be a substitute for professional medical advice. If  provided, information are for educational purposes.Consult doctor is a MUST for changing of treatment plans.

Re: Hello Everyone, New Diagnosis

hey all-star,

Thanks for your response, I am so happy to hear that the chemo is working for you with little side effects.. we have not completely ruled it out.. but of course greg is so hesitant. I just read him your blog.  Tomorrow we are going to the hospital because the ascites is becoming painful for him. He is 9 months pregnant looking and having a hard time moving around and eating.. He has become soooo weak..  walking and getting of the toilet requires assitance..I am frightened seeing him in this state, I hope that this is only temporary, as he is laying in bed alll day.  This cancer sucks!

Re: Hello Everyone, New Diagnosis

Jill......At this point I don't believe that any physician will offer chemotherapy for Greg.  He must be made more comfortable and the upcoming paracentesis will help him get there.  Please, keep us posted.
All my best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Hello Everyone, New Diagnosis

hey everyone,

Finally home from hospital, Greg, my husband had 7.7 liters of fluid drained from his abdomen.. they also told me that his cancer has spread in his liver as well as a left lower pnuemonia in his lung.  He is sooo weak.. I am hoping to see maybe some energy come back.. they talked to us about hospice.. this is all too much to take in.

Re: Hello Everyone, New Diagnosis

Jillybean, I am sorry to hear your husband's report. Plese know that calling on Hospice for help does not mean the end. They start with some patients as far out as a year. If at any time you want to discontinue with Hospice, if you see him getting stronger, you can always start again. In the meantime they can help make him so much more comfortable which will help you as well. I hope he starts regaining some strength back and the best I can do for you is to tell you to be strong! Big hugs coming your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Hello Everyone, New Diagnosis

Hi Jillybean, I understand the total shock. My husband was 59 (now 60) last October when he was found to have cancer throughout his liver and bones. It was his back that was causing him grief when he was biking and skiing (avid biker and skier). Needless to say to find out he had stage 4 cancer was shocking and heartbreaking. It took 2 months to figure out it was cc. He had radiation to the worst bone mets and did six months of palliative chemo. I wanted to tell you our story because Doug did respond to chemo. His ascites cleared up and the cancer has been stable since February. Doug took naturopathic support through his chemo and continues today.  It is a personal, tough choice to do chemo with late stage cancer but the anti nausea drugs they have today really help a lot more than in the past. Doug is now enjoying a chemo free and pain free summer. He is not "well" but he is a lot better and enjoying life more.
Greg will probably feel better once they get the pneomonia cleared up. It can really zap your strength. Let your husband know there are a lot of people out here fighting with him and rooting for him.  Best wishes to both of you. Nancy

Loving my husband from afar.

Re: Hello Everyone, New Diagnosis

Hi Jillybean,

I am sorry to hear your news about Greg. And like the others I can so relate to what you feel right now as I felt the same when my dad was given news like this. As Lainy says, calling on hospicxe does not mean the end and I know that hospice will be of great help to you both. My dad was also under hospice care and they did so much good for him with managing his symptoms and keeping him comfortable.

I hope that now that Greg has had this fluid drained from his abdomen that he will start to feel better and also stronger. What did the doctors say about the pneumonia in the lung and did they give Greg anything for this? My mum had a bad bout of pneumonia earlier this year and it took her some time to recover from it. I hope that today Greg will be feeling a bit better and remember that we are all here for you.

My best wishes to you both,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Hello Everyone, New Diagnosis

hello jillybean,

sending many hugs and love your way to you and your brave husband.

my mother also did not want to do chemotherapy. it is 1 year later and she is very tiny but here! she is fiesty and a tough lady.

this is a wonderful website with the most genuine caring people. if you need anything just let us know.

Hugs,
Roni