1

(11 replies, posted in In Remembrance)

Amy,

I am so very sorry for your loss.  I am certain that she is in the most wonderful glorious beautiful place that none of us can imagine...peaceful and painfree...earth is a place that prepares us for greater things!  I hope your feeling better and your fever is gone.  Take care....

Karen

Kris..Lainy...Ashley...

Thanks for the comments and support!  Appt. yesturday went well...lets say I'm not impressed with the Dr. as I felt he is the professional and should informing us of everything...instead of letting me pull it out of him!  He offered direct radiation...and stated "this is not a curitive disease" too many times during our session...I kept reminding him that we are fully aware of this...GEEZ!  Oh well I won't go on and on about my issues with this particular Dr.  In the end...he stated he would do whatever the oncologist would allow him to do...I had to pull the cyberknife procedure out of him...lol!  I asked him if I should call the oncologist to let him know what was discussed during our visit...he says "yes".  This pissed me off so when I got home I called the oncologist and the interventional radiologist offices...lol...I got a call back immediately from both!  Actually the interventional radiologist called me three times to talk about a plan...and inform me of his discussion with the Dr. we had seen yesturday.  I'll spare you all of the little detailed conversations.  So the plan is as of yesturday at 6pm....Monday morning the two radiologist are going to meet early to plan asap to start Cyberknife since my husband's first appointment for Theraspheres isn't until August 11th.  So...Cyberknife for extahepatic tumors etc. first...then immediately following or asap will be the Therasphere Therapy.  I will be getting a call on Monday...per the interventional radiologist.  The oncologist is going to schedule a CT of the spine (due to pain my husband is experiencing) and a complete CT of everything else...Chest and Abdomin area's.  I told him the Dr. we had seen yesturday made a comment during the exam that he felt a lymph node under my husband's right arm pit.  I don't know what that means but he said it out loud and he said he wasn't concerned...he should know better than to make a comment out loud like that if he had no concerns in front of a cancer patient and his wife...it caused a bit of a new panic as does each new area that is found.  I do have to admit though I probably focused more on the first part of the comment and let the "I've no concerns" part go by the wayside.  My husband reminded me that although we seem to have a plan now for treatments...the plan could change.  He is right...it's hard finding the right mindset to be in to keep some sort of sanity at all times....

Your all in our thoughts and prayers....Karen & Russ 

PS...Please pray for my nephew, Cliff who was in a terrible work related accident yesturday....

Elaine and Gary,

You might check Cleveland Clinic, though they wouldn't accept results etc. from our previous hospital...had to have their own.  The interventional radiologist that my husband is seeing is Dr. Levintin.  He is wonderful and such a blessing...and is ON THE BALL!  The RN that works with him is just as wonderful.  Her name is Teri Miller.  I would call her and ask your questions.  There is another RN working with her and she is also wonderful!  The RN's number is 1-216-444-8708.  The voice mail will tell you for general questions call another number...don't...leave a message on the first number.  I would think she would be able to ask Dr. Levintin the question and get back to you.  Cleveland does do Theraspheres and is doing their first Sir-Spheres this week.  Good Luck!

Karen

4

(14 replies, posted in General Discussion)

Stan,

Echoing all of the above sentiments.  Please know that you and your family are in my thoughts and prayers as you tread through this difficult time in your life.

Blessings for you and your family...Karen

OK...so today my husband and I marched our fanny's into his appt. with the surgeions to have his staples removed with a list of questions.  All went well...questions answered to clarify/confirm understanding of the resection that was not to be.  The tumor encasing the three "things" outside of the liver were the bile duct, the hepatic artery, and the portal vein.  Could not pursue the resection because they could not get at the bile duct to complete the work needed outside of the liver for the resection to be successful.  Intrahepatic and extrahepatic cancer.  Surgery team relinquished us back to the on-cologist but said if we felt we needed to talk to them about anything in person or over the phone to just call. 

Next the oncologist came in (love the guys attitude)...we had three pages of questions for him and he answered each and every one!  Found out that there are actually two tumors in the right lobe, 1 = 5"x7" and the other is 4"x4".  He thought that direct radiation would be the plan until I brought up the other treatments...to include SIR-SPHERES & theraspheres (which Cleveland Clinic does do).  He also wants to pursue chemotherapy for 6 months after radiation.  He mentioned Gemzar as the drug he would choose best for my husband.  I then informed him of the study regarding using Gemzar and Cisplatin to which he smiled and stated he was aware of that was in agreement with this if my husband felt he wanted this more agressive treatment (2 vs 1 drug).  He walks out and discusses what we discussed with the internventional radiologist and his team. 

Interventional radiologist and team walks in stating there was a minor disagreement and discussed using therashperes to treat the tumors in the right lobe and schedule an appointment with another radiologist to treat the tumors outside of the liver in other ways.  He also discussed SIR-Spheres as well and noted they would be completing their first procedure using SIR-Spheres next week and if that is what we wanted...he would listen.  He did point out the differences and the increased risk of SIR-Spheres for my husbands case.  Also informed about the Clinic's needed Board Approval & then FDA approval but has not ran into too much difficulty in getting the procedure/drug approved by both.  Found out today that my husband now has a lesion on the left lower rib!  So the thought is that the oncology radiologist will treat the tumor encasing the bile cut/portal vein/hepatic artery along with the two lymph nodes, if possible, and the lesion on the rib.

Tomorrow we have an appointment with the radiology oncologist to discuss treatment plans for the extrahepactic tumors/lesions. 

I've read some of the previous postings about theraspheres and some difficulty's with the insurance company's approving the procedure.  One discussion noted Cigna's position with a link but when I clicked on the link in the discussion I got the good old "page not found" signal.  I'll call our case worker at Cigna tomorrow and ask her. 

FYI...after discussing our latest nutritional journey (1 week as vegans) with the oncologist...we've decided to again enjoy, although in moderation, the wonderful American diet!  I did and do enjoy alot of the receipes we had tried and will continue many...but the diet was decreasing my husbands appitite (already lost 20 lbs) and depressing him which wasn't good for his moral.  So...we enjoyed a moderate mid afternoon dinner at Olive Garden!  It's funny...before the diet we could have eaten everything on our plates...today we only ate half of our meals before filling fully satisfied.  After eating...we both began to feel a bit sick to our stomach's.  Probably shocked our systems a bit with the change.  That only lasted 2 hours but it was well worth the taste of that yummy grilled salmon!

Keeping you all in my thoughts & prayers....

Karen

6

(8 replies, posted in Introductions!)

Peanut,

I am so sorry for your loss.  Your mom will always be with you as Jamie & Lainy said...when your sad...look inside your heart and find those forever lasting wonderful moments in which you and she shared.  I bet you could think of a gazillion of them.  She lives on in you and your brothers.  I will keep you, your brothers, and your father in my prayers.  When I'm sad...it helps me to think of those who I've lost over the years as living it up in heaven...free of whatever pain/suffering/disability/illness they had experienced here on earth..living the ultimate life...serving our father in heaven.

Bless you....Karen

7

(6 replies, posted in Hospitals)

Thanks Lainy...going to search Envita now.

8

(6 replies, posted in Hospitals)

Lainy,

Search board shows nothing on Issels.  The web site address is as follows: 

http://www.issels.com/submitted_itc.aspx

They note achievements in complete long-term remission of a great variety of advanced cancers that had failed conventional therapies.  I don't recall seeing anything about specific cancers.  I'll have to go back and check out their testimonials if they have them.  I was just wondering if anyone had experience with immunotherapy treatments here.  I'm cautious as I've not found anyone that has heard of this place. 

Karen

Hello Diane,

I'm glad you have found what I know to be the best place for support & help in dealing with cc.  This site and everyone here has educated my husband and myself in dealing with all that comes with cc.  It's like a library full of information only all the information is geared toward cc and you don't have to sift through to find it!  The stories of others has been helpful to my husband as he hears the facts from others who are going through the same thing as he is. 

Karen

10

(6 replies, posted in Hospitals)

Howdy All!

OK...doing a bit more research.  Found Issels Treatment Center.  Two centers...Tijuana, Mexico & Santa Barbera, California.  EXPENSIVE AS ALL GET OUT!  But...what do you do when your in a cc position?  At this point my husband and I are not sure of ourselves and the decisions we are making.  So we just keep gathering information regardless of anything to keep on hand.  It seems the more treatments we read about the harder it is to come up with a decisive plan of action...he looks at me and asks should I...I look at him and say we'll do whatever he decides...seems that both of us are fearful of not pursuing/pursuing what might be the answer for him!  I HATE THIS CRAPPY DISEASE!  Sorry...I had to have one of my moments. 

OK...back to the Issels Medical Center.  Has anyone read up on them or experienced any of the treatments that they offer?  Comprehensive immunobiological treatment protocols specific for each person.  Your thoughts?  Am I stetching for something that might not be there?  I feel like I'm going round and round in a circle and can't stop anywhere!  I HATE THIS SO MUCH!  Sorry again...seems I'm having a few of my moments today.

Logic tells me to take the information we have gathered to my husbands appointment next week and discuss them with his oncologist...but I wanted to inquire here about your experiences & thoughts as I feel I get the most accurate & truthful information from all of you.

Karen

Hello Everyone! 

My husband and I recently joined a 4 week class at our local hospital covering cancer nutrition.  That class is based on the book "The Cancer Survivor's Guide" by Neal D. Barnard, MD * Jennifer K. Reilly, RD and calls for what I call radical changes in what we consume (I am a meat and potatoe all american girl so it's especially overwhelming for me).  Basically, low fat high fiber and calls for cutting out all animal products & by products to include all dairy.  My husband has decided to give it a try so I'm game and along for the ride.  Besides...the receipes are fantastik and I love all foods!  Have any of you tried a diet such as this and if so...how did it go?  I was wondering if anyone has followed such a radical diet and what it has done for them.  I'm hoping if anything this will be one form of attack in slowing  down the progression of the cc for my husband...plus I know it will be healthier for both of us.  Your comments are appreciated.

Feeling like I'm in a crap shoot right now.  Soooo much information...so many treatments/alternatives/medications!

Karen

Hello Everyone!  It seems this wonderful place has brought me back to my senses in that I find great encouragement and support each time I visit.  Why did I stay away for so long...who knows!  All of the postings has led me to find strength and appreciation for all of you for sharing your experiences and wealth of knowledge.  Today I've learned about Sir-Spheres, yesturday I learned about CyberKnife, the previous day I learned more about the latest on Gemzar and Cisplatin!  I'm feeling less stupid each day!  What a blessing this site is and how blessed I feel for knowing & learning through your stories and support.

Karen

Hello Everyone!  It's been a while since I've posted and wanted to get this ordeal off of my mind.  Somehow I feel that if I do this...I can begin some positive thinking!  My husband had his right portal vein embolism May 16th for the large tumor in the right lobe of his liver.  Cat scan on June 16th showed that cc had spread to another lymph node, enlarged the one already involved, and also had spread to a few of the bile ducts outside of his liver.  The left lobe had not reached the size they had wanted but felt they should proceed asap with the resection.  June 26th was the day we thought would give us hope on getting a handle on this horrible disease.  After three hours in surgery the doctors called me in to state that that there was a hard "gravel" like tumor encasing three structures outside of the liver.  The doctors stated he tried for two hours trying to find a way to remove the tumor surrounding the structures but the tumor was so hard and he felt continuing to try would damage the structures and therefor the surgery ceased.  Needless to say I was too upset that I'm not sure that I had asked all the right questions nor am I sure I actually heard what he said.  Both doctors seemed as upset as I was.  My husband is doing better each day, healing, but needless to say we both are scared and upset about the whole thing.  The original plan was to begin radiation with chemo (gemzar) after he had healed from his surgery.  When my sister-in-law asked him if this was still the plan the doctor stated that he wasn't sure at this point the radiation would be beneficial but he wanted us to have hope and pursue this option anyway.  He scheduled us for a follow up appointment to have the staples removed and an appointment with the oncology radiologist (we have had one consult with him already) on the same day.  The doctor stated he had never seen anything like the tumor that has encased the three structures before and has been doing this type of surgery for 25 years.  I've researched the liver to find pictures of outer structures of the liver and have only found the bile duct outside of the liver which branches off.  Excuse me if I seem uninformed, would this happen to be the structures he is speaking about?  I feel absolutely silly not having a good understanding or giip on this!  Our plan is to take all the radiation treatments that we have read about with us to the appointment with the oncologist radiologist and make him go through the list with us explaining why/why not each would be an option for my husband.  I also wanted to ask him about the latest on the two medications gemzar and "something" (can't think of the other) posted here.  I'm having difficulty understanding how radiation works (probably because I need detailed specifics).  On the one hand I understand that radiation can shrink tumors and damage cancer cells.  Chemo can damage cancer cells as well as kill cancer cells (right?).  With all of this said, I just don't get why the *@!! there isn't a more positive outlook on cc!  I'm sure it's because "type" of cancer hasn't responded well to what we have on the market at this time...right?  If cancer cells are killed...why do they spread?  Sorry...I'm a bit confused at this point in wrapping my mind around this entire beast! 

On a better note, anyone going for treatment at Cleveland Clinic should ask their social worker to get them on a list to stay at Hope Lodge (American Cancer Society).  It's a beautiful place...and it's free.  Once your in you can stay for as long as you need/want!  They have everything there!  For me it was my first time socializing with others in person who are experiencing cancer.  I have to say it was a beautiful experience. 

You are all in my prayers....

Karen

14

(19 replies, posted in Introductions!)

Eleanor,

Welcome to what I've found to be the most wonderful, supportive, and informative group of loving individual's EVER!  I'm new at this as my husband was recently diagnosed and find GREAT comfort in this BLESSED  foundation.

Karen

Thank you Marions for the explanation.  I'll visit the site for sure.  Tiffaney,
is your referral to Mayo going?  Keep us posted and your in our thoughts and prayers!

Karen

16

(6 replies, posted in General Discussion)

Thanks everyone for the info!  Thus far my husband has had no treatments of any kind other than tests.  It's been two weeks since blood work has been completed at my husband's last biopsy.  Of all the blood they have taken from him, we have been told no specifics.  I guess we really need to sit down with a doctor and ask ask ask.  Today we officailly begin our attack on this dreaded disease.  It's off to Cleveland Clinic for his right vein portal embolization. 

Karen

Deb,

So sorry I've taken so long to get that receipe for your dad!  I checked with our nurses and here it is:

1 box (3.4oz) of instant pudding
3/4 cup half & half cream
1/2 cup of water
1 cup of carnation evaporated milk (use canned not powdered etc.)

Mix together in a bowl then mix with a mixer for one minute until it begins to thicken.  This receipe makes 4 servings.  We use it to help individual's we serve who are under weight to assist in gaining weight.  As you can see...it is very rich and full of calories etc.  Let us know how your dad is doing!

Karen

18

(6 replies, posted in General Discussion)

Hello Everyone!  My husband has been experiencing two new "symptoms" these past two weeks.  I was wondering if anyone else had experienced these:  a metal taste in his mouth and an odor about himself (I have noticed the odor).  I told him to bath which he does twice a day (trying to be funny), and to follow up with his dentist to insure he didn't have a loose cavity (hoping for reasonable and simple explanations).  I think at this point every new sensation that he experiences weighs heavily on his mind as I'm sure is par for those with cc.  No other "symptoms" at this time except for fatigue, discomfort, and some pain depending on activity.  He has yet to start any treatments. 

Karen

19

(6 replies, posted in Events & Fundraising)

Thanks for sharing such a wonderful story!  Tracey is a wonderful role model for the fight against this dreaded disease.

Karen

20

(5 replies, posted in Insurance)

G,

Thanks for all the helpful information.  I hate that I have to think of these things right now!  Hate It with a passion!

Karen

21

(16 replies, posted in General Discussion)

How wonderful for your father and your family!  It's such a wonderful blessing not only for you but for all of us to hear not just great news but extra ordinary fantastic news in reference to cc for a change!  I will keep your father in my prayers as he recooperates from his procedure.  WOOHOO!

Karen

Deb,

You might want to look into power pudding.  You can make it at home.  We use it alot in the field I work in for individual's who need to gain weight and strength.  I haven't the receipe on me at this time but will get it tomorrow for you.  Your father is in my prayers...

Karen

Tiffaney,

May I ask what exactly is a erpc?  I do believe second opinions are a MUST!  My husband's first doctor wanted to begin chemo right away and offered no hope with or without the chemo.  We went to the Cleveland Clinic and was given a whole different senerio (much better/hope/options).  He has now been considered a candidate for surgery.  I will keep you in my prayers...

Karen

24

(5 replies, posted in Insurance)

Thanks G & Lisa,

G...will you be collecting LTD through your employer and SSD at the same time?  As of yet, my husband's employer has not asked him to file any FMLA papers. 

Lisa...When will you begin paying Cobra?  While on STD or if/when you move to LTD?

Good point...I'll have to ask my employer if/when I can add my husband as I think your right...there are only certain times throughout the year we can do this. 

Karen

25

(5 replies, posted in Insurance)

Hello Everyone!  Hoping some can share their experiences with LTD.  My husband, Russ, has LTD through his employer.  He has been on what I'm thinking they are calling "sick leave" since his final diagnosis April 6th, 2009.  He will continue with this for six months.  Then I am assuming he will need to apply for the LTD with his employer.  I know he will remain on his current health insurance through the initial six months.  If/when he apply's for LTD through his employer, will his health insurance continue?  I"m wondering if he should apply for FMLA after the initial 6 months to secure his health insurance remains in affect for as long as possible.  I'm also wondering if I should go ahead and place him on my insurance at this time through my employer.  I know I should be asking his employer these questions but have little time as I work full time myself.  I would appreciate any experiences that you may have had with LTD.  I've read most of your insurance notations on the board.  Seems like at least our social security system alleviates some of the pitfalls of this horrible disease/experience by processing claims in a timely manner.  These are not questions I thought I would ever be asking.  I feel uneasy having to think about these things.  It's all so unreal. 

Wishing all of you wonderful mommies a beautiful and most glorious Mother's Day! 

Karen