1

(11 replies, posted in General Discussion)

Lainy; We are not going to the second onc because he was in Cleveland at Cleveland Clinic and we live in the Columbus area which is 2 hours away.  His diagnosis and treatment plan was exactly the same as the onc we are seeing at OSU.  I think the only difference was the attitude of each doctor.  Although our onc here is a young woman and not what I would call "warm and fuzzy' she does seem to know what she's doing.  I am not willing to let my husband just give up and start dying no matter what his doctor has said about the life expectancy of her patients.  One of the things I have learned through this (and some other medical circumstances) is that you have to be your own advocate.  I want to be an involved participant in my husband's care and if something doesn't make sense to me, then I question it until I get the answer I want.

Ken is getting Gemzar and Carboplatin every two weeks.  I know protocol is Gem and Cisplatin but he was already experiencing tinnitus and has some hearing loss so his doctor didn't want to give him the cisplatin because one of the side effects is hearing loss and tinnitus.  So she went to carboplatin which is a step down from cisplatin.  It's working  pretty well and he's not having hardly any side effects (the nasty ones anyway) so for now we are sticking with this combo.  If it stops working and the tumors start to grow, we will reassess and try something else.

Thanks for the encouragement to be strong.  My friends tell me I will be okay because I am so strong.  But they aren't with me when I'm melting down and wondering how I am going to do this.  I will make it through all this because I have to, for my children's sake if nothing else.

2

(11 replies, posted in General Discussion)

Thanks for the information from everyone.  And believe me I do NOT talk to my husband about becoming a widow.  He doesn't follow this discussion site and I choose very carefully what I read to him.  I know he feels guilty about contracting this awful disease.  He's had cancer before, 15 years ago, and so we are not new to the "diagnosis".   But it was very different and surgery to remove the tumor got it all so he did not have to have chemo or radiation at all.  It had not metastasized to any other organ or any lymphs so although the process was extremely stressful, the results were very positive.  And the doctors this time said there was absolutely no connection between what he had 15 years ago and CC. 

I guess you have to at least feel like you've exhausted every avenue that's out there for a possible breakthrough.  I do place a HUGE amount of credibility on this site and all of you.  So many have "been there, done that" and I know we can all learn a lot from those that have gone before us.  But I also know there are breakthroughs all the time and I would sure hate to find out I missed something out there.  Isn't that the purpose of this site?  To share experiences and pass on information?  That's what I love about it.

Ken's scan last Monday was pretty good.  No new growth and some shrinkage especially on one of the tumors.  The bad news is we found out that he has 4 tumors in the liver which we did not know.  We thought he only had one.  The lymphs have shown no change.  We are taking everything as positive news.  He's still doing pretty well, working full time, mowing the  yard.  But he gets tired quickly and takes naps which is to be expected.

We are continuing to stay as positive as possible and, as a friend told me, "keep[ing] on living".

3

(11 replies, posted in General Discussion)

Thanks for the practical advice.  I was at home surfing through channels today and saw an infomercial for Cancer Treatment Centers of America.  I keep wondering about them as they say they have a holistic approach to treating cancer patients which includes diet, acupuncture, etc.  I'm not sure my husband would be open to changing his diet dramatically if there were no proof that it did much good. Of course, if he knew it would cure him, he would eat dirt!

Nevertheless, I thought it would be a good thing to see what others on this site have experienced.  We live in the Columbus, Ohio area and the closest centers are either Chicago or Philadelphia, neither of which are close and I'm with Mary.  I think being close to family and friends is so important (maybe more for me than Ken, actually.)  I will check the posts and see what others have experienced with CTCA.  I guess we are still in denial a little bit since Ken is still not having any symptoms of the cancer and are grabbing at anything we can to find a cure (I know, not possible).

We have a daughter (our youngest) who will graduate from college next May and I want to do everything possible so Ken can attend her commencement.  It's in Indiana which makes it more difficult but we will make it work if possible.  Ken will have been diagnosed for a year in November.  Although the original diagnosis was Lymphoma it then was changed to CC after so many biopsies and tests in December with the diagnosis of CC in January.  I count the date of his diagnosis actually November.  It's stage IV so I know he had had it for quite awhile before November.  In fact, a year before that, he was complaining of his ribs hurting and I think it was the lymph nodes at that point but his doctor just chalked it up to some weird "inflammation" in his rib cage.  An unrelenting cough is what sent him to the doctor last November which resulted in x-rays and an MRI.  That's when they saw the lymph nodes.  His doctor said her patients live between 6 months and a year but the second opinion doctor said some patients live months and others live years (with an "s").  That was encouraging.  I figure the chemo will kill him first as it destroys his liver and other organs.

All I know for sure is this cancer SUCKS!  There's hardly a day that I don't cry about it and am scared to death about my future without him.  We will be married for 37 years in October and I never, in my wildest dreams, thought I would be a widow so early.  But I do have a deep faith and am confident that God is going through this with us and His ways are always a mystery and at the very heart of it all, He wants only good for us both.

Thanks for the input.

Jayne

4

(11 replies, posted in General Discussion)

I am wondering if anyone out there has either gone to or gotten a second opinion from any of the Cancer Centers of America for CC.  My husband, Ken and I went to Cleveland Clinic and basically got the exact same information that we have gotten at Ohio State University, The James Hospital.  The doctor we saw was young but felt he was experienced in CC having had 30-40 patients in the 3 years he's been practicing in Oncology.  That wasn't extremely encouraging, however.  He also said he knew our oncologist at OSU and she was a good doctor.  But I can't help but wonder if the doctor at Cleveland Clinic and our doctor would have supported each other no matter what.  I do not believe they would intentionally harm a patient, but they have obviously been trained similarly.

As an update, Ken is doing well.  Still no symptoms of the cancer, but the chemo is taking its toll.  He has lost a lot of his hair but not all of it.  His blood counts continue to drop but have not gotten so low that chemo was not administered.  His newest side effect is that he constantly grits his teeth.  Like he is chewing something but is not.  Of course, he is tired but is still working full time and even mowing the grass (his baby).  He had scans on Monday (8/5) and we will see the doctor this Friday.  The past two scans have shown minimal improvement but we were at least happy that his cancer was not growing or getting worse.

Any information would be greatly appreciated regarding Cancer Centers of America.  Thanks so much!

Exoaria, I will pray for your Mum as well.  I too, am a Christian and I have a friend who lives in Adelaide but is a police officer somewhere in the country (I think she told me 8 hours from the city).  She grew  up in Adelaide but came to the United States to attend college at Milligan College in Tennessee.  My oldest daughter was attending that college too and they became good friends.  Since she couldn't go home for school breaks or holidays we "adopted" her and she became a wonderful part of our family.  After she graduated she returned to Adelaide and went to the police academy.

As sad as it would be to lose your mum, remember, that "...we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28 God is watching over you and your family, crying with you as you are hurting and will continue to be with you no matter the outcome.  Rely on your faith to uplift you in uncertain and scarey times.  Your mum needs YOU to be strong for her as you go through this together.  Find someone to talk to if you don't have anyone besides your mum, so you can share your feelings and fears.  That helps keep everything in perspective and to know you are not alone.

God bless you!  Stay positive!

Jayne

Hi Dorien!  Welcome to this amazing site.  I am so sorry you had to find us, however.  My husband was diagnosed in January this year.  He went to his family doc with a chronic cough which resulted in an x-ray (nothing) then an MRI to rule out a blood clot (nothing in the lungs) and an enlarged lymph node was found in his abdomen.  That was the week of Thanksgiving and started test after test, biopsy after biopsy.  Finally, in January, we got the devastating diagnosis of CC.  Ken is 58 and all our children are mostly grown (our last is finishing her junion year of college) but it has nevertheless been frightening.  I have never worked full time since the children were born so thinking about medical insurance for myself and a way to simply survive alone has been overwhelming.  Ken has stage IV so he is not a candidate for surgery so we are counting on the chemo (gem and carboplatin) to do everything possible.  After his first scan since starting chemo, the onc said "he is trending in the right direction."  Ken was hoping she would say, "We can't find any evidence of the cancer!"  I'm sure everyone with this awful disease has hoped for that.  But I have decided to do what everyone on this site recommends...live each day to the fullest, stay positive, hope for the best and laugh often.  I still cry almost every day but for the most part I try not to dwell on all the unknowns.  They can literally make me crazy.  What I know is I have 4 amazing kids and 3 amazing in-law kids who are there for both of us which makes this a little easier to  deal with.

My prayer for your husband is that the chemo will work with amazing results and at some point your husband will become a candidate for surgery.  And for you that your family will draw close and celebrate every day you have had as well as wonderful days to come.  God bless you!

Jayne

7

(5 replies, posted in Introductions!)

Hello Ladybug!  I am so glad you found this site but sorry you had to.  My husband also was diagnosed with CC in January, just turned 58 on Monday.  Without these people, I wouldn't know half of what I do now.  They are an encouragement and support in ways you will not believe.  My husband did not have any symptoms before being diagnosed and in fact, went to the doctor for a cough which led to an MRI of his lungs and the finding of an enlarged lymph node.  Several biopsies later, we finally got this diagnosis.  We started with possible lymphoma (would have preferred that!) to pancreas cancer (cried all weekend) to this (not a whole lot better).  He was not eligible for surgery since it had already metastisized to his lymph nodes and his doctor thought it unwise to delay chemo for 3 months so he started chemo of Gemcitibine and Carboplaten.  He has had 4 treatments.  He has tolerated them pretty well although this last one has left him SO tired.  He has been working almost every day but this time he has only worked two days all day and then comes home and crashes, sleeping on the couch or in his chair.  I'm concerned his blood counts have dropped but he goes in Tuesday so they'll know.

This is surely a roller coaster ride.  Some days are good, some not so much.  Hang in there.  You are not alone.

Jayne

Hi all!  Haven't been on site for awhile.  Things have been going pretty well.  Ken has had 4 treatments and up until this last one, really tolerated it very well.  This one, however, he is SO tired.  He comes home from a half day at work and sleeps for another 2-3 hours.  I am guessing the chemo is doing a number on his blood cells. His last treatment the red blood cells were just on the end of the low list but everything else was okay.  He did see the physician's assistant and she didn't even mention the numbers, neither did the nurses, so we assumed even though a couple numbers were low, everything was still okay to go ahead.  Did any of you out there experience similar effects?  He goes again this Tuesday for another treatment and I assume they will take this into consideration.  They warned us that the Carboplaten would affect his blood counts.  Thanks for any information!

9

(22 replies, posted in Introductions!)

I love this conversation about diet.  When my husband was first diagnosed we decided NO MORE SUGAR or DAIRY.  He has a co-worker who is Chinese and gave him teas to drink (especially Green Tea) and told him to eliminate all diary.  THEN, as I was reading through all the "millions" of pages of information from the doctor, the chemo clinic, and whatever else I could find, I kept reading that dairy helps with protein intake especially when meat starts tasting bad, soothes any sores in the mouth and throat and I guess generally is a good thing.  My husband LOVES milk (as I've shared before) so he started drinking it again.  Then I read that basically keeping the patient's weight up is most important so let them eat anything they want. 

I would sure like any/all of you to weigh in as far as diet, food restrictions, etc.  I support anything that helps the liver do its job and certainly want to eliminate any foods that might prevent or hamper the liver for working the way its intended.  And certainly I don't want to feed my husband anything that would/might fuel cancer cells to grow faster.

Thoughts, websites, greatly appreciated!

Jayne

10

(26 replies, posted in Introductions!)

The trial drug that Ken was supposed to get but the study was cancelled was an oral drug AZD2171 that was to be given along with cis and gem.  As I said before, they study was cancelled (it originated from Case Western Reserve and OSU was participating with them) because they ran out of the study drug.

Jayne

11

(26 replies, posted in Introductions!)

First, I want to thank everyone for their comments on clinical trials.  Just the words, clinical trial, is scarey enough but then to feel totally uneducated about them only makes it more terrifying.

Second, Susan, I am so glad you decided to share your story.  I have already found that these people are the best and ready to educate and support. Who better to talk to than people who are there or those who have been or are caregivers.  I realize every person is an individual and may respond to chemo differenctly, but to be able to ask questions and get honest answers is so helpful.

As far as not telling people, I want as many people praying for Ken as possible.  We have great faith in the One great healer along with using what's currently known in the medical community.  Sometimes life is just hard and no fun at all, but it's all life.  Ken has felt the love of people that he works with (he works with a man who is Chinese and committed to healing him with Chinese herbs), family, friends who live out of state, etc., etc.  They have not been "nosey" and asking too many questions, but just making sure that we know we are in their thoughts and prayers.  That alone makes dealing with this a little bit easier.  I have started a Caring Bridge account for Ken which allows me to post entries as I want and anyone can go to that site and check it.  They can then post a response.  It's so easy and a way to keep people informed without me having to email everyone.  I also don't feel like I have to respond, unlike if someone emails me.  I was hesitant at first to establish the account because the only people I knew who had an account were either at the end of their lives or had already passed.  I was encouraged to go ahead for no other reason than because it was so easy to do and keep people informed.

Please continue to use this site for questions or just support.  I look forward to seeing you in these discussion boards.

Jayne

12

(26 replies, posted in Introductions!)

To PCL1029:

Do you live in Ohio?  Have you had a bad experience with OSU or  know someone who has?  We were offered to have Ken on a clinical trial from the get-go but told to take the long weekend to read over the information sheets and then give our answer.  The day the clinical trial coordinator called they informed us that the clinical trial had been cancelled because they ran out of the study drug.  Honestly, after reading all the possible side effects (5 full pages of them!) I wasn't so sure he should do it.  I felt my prayers were answered when the trial was cancelled.

I'd be interested to see how many out there have participated in a clinical trial and what you learned from it.  I just read about Ginger who did one toward the end and was "the sickest" her husband had ever seen her.  I don't think my husband wants to get to the end of his life like that but on the other hand will do whatever is necessary to live.

So I guess my question is do you think clinical trials are a good thing or something to avoid?

Jayne

13

(26 replies, posted in Introductions!)

Kris:

I would love to discuss my husband's situation with you directly.  Could you email me at jaynesmalley3893@gmail.com?  Thanks for all the great information.  He is on Gemcitabine and Carboplaten and so far doing pretty well.  The nurse told us that the carbo will deplete his blood counts which the gem did not do at all after just one treatment.  He did very well for the first three days, then yesterday and today seems wiped out.  He said he's very tired and looks it.

I told him we need to get a second opinion but we started with Ohio Health, had a terrible experience with them and decided to try OSU.  This was all before the official diagnosis of CC.  The James is supposed to be one of the nations top-rated cancer hospitals and in fact on this site is only one of two hospitals recognized as an "expert" in CC.  My frustration is just having anyone to talk to from his team.  I don't reallly want to schedule an appointment but I think that's the only way we can get our questions answered and spend sufficient time with a doctor.  For example, I'd like to see his last MRI scan to see where the tumor is exactly.  He has NO symptoms.  The way this whole thing started was because of some enlarged lymph nodes in the abdomen.  I'm not saying their diagnosis isn't correct, but I'm just wondering why he's not lost any weight, etc., etc.  We are thankful, but just curious.

Jayne

14

(8 replies, posted in Members' Cafe)

Kris, your story gives me and my husband great hope.  When he finally got his diagnosis last month we were hoping for a good "year".  So many people on this site, including you, are showing us that "years" are possible now.

God bless you!

Jayne

Hi all!  Ken had his second treatment today and they added carboplatin.  The information sheet didn't seem too bad.  Ken is a little disappointed that he probably will lose his hair (he has a full head of beautiful gray hair).  Has anyone used this drug and what types of side effects did you experience?  Was it used in combination with gemcitabine?  They loaded him up with anti-nausea drugs before administering the chemo and he has two anti-nausea drugs at home to take if needed.  We are both hoping he tolerates this treatment as well as the last.

Thanks for all the information!

Jayne

16

(12 replies, posted in Introductions!)

Hi Eric!  My name is Jayne and my husband, Ken, was diagnosed in January after a lengthy process of trying to figure where his cancer was.  Surgery was not an option as his lymph nodes are involved and his oncologist did not think it wise to wait to start chemo after a possible 3-month recovery period from the surgery.  So, he started his chemo two weeks ago and will have his second treatment tomorrow.  He was only given one drug; Gemcitabine, but they are planning to add a second (don't know what yet) tomorrow.

He is 57.  We have four grown children and a wonderful support system.  He's doing very well at this point. He did not have any nausea and although he does get more tired than usual, has no other symptoms.

I am so thankful for this website and the people who have already embraced Ken and I.  The best advice I've already gotten is not to focus on statistics.  You are not a statistic and miracles do happen!  Best wishes as you continue your treatment.

Jayne

17

(26 replies, posted in Introductions!)

Thank you for your quick responses. Some days i feel all alone with this situation. We have four amazing adult children who are ready to be my support as soon as i let them but as their Mom all i want to do is protect them from the pain of watching their dad deal with this situation. I am sure i have totally underestimated them. I am sure the day will come that i will totally rely on them. I will let you know what new drug Ken will get. And i am so thankful for this website.

Jayne

18

(26 replies, posted in Introductions!)

Hi! My name is Jayne and my husband, Ken (57) was diagnosed with CC in January 2013.  This process began the week of Thanksgiving 2012 with a possible diagnosis of Lymphoma.  After two endoscopic biopsies of a gastric lymph node as well as one on the periportal, the results indicated that lyphoma was not the proper diagnosis and further tests/procedures needed to occur to find the original source of the cancer.  What we did know at that point was that it was already in an advanced stage although he was not having any symptoms.  A third endoscopic biopsy was performed on the pancreas (no tumors in the pancreas), a colonoscopy (negative), and another MRI of the abdomen (liver, kidneys, bladder), his case was shared with the Pathology Board at The Ohio State University, The James Cancer Hospital.  Finally, we received the diagnosis of CC Stage 4 and was referred to Dr. Wu, oncologist at The James.

Ken has had his first chemo treatment two weeks ago and tolerated it very well.  They were only able to give him gemcitabine because the other drug (I believe is cisplaten) causes tinitis which he already has.  They have requested insurance approval of something else (not sure what yet) and we are hoping it will be approved and available for his second chemo treatment this Tuesday (2/12). 

I have so many questions in my head which I try to get down on paper.  I did ask the doctor, the first time we met, what life expectancy is for this cancer and she hesitantly said average is 1 year.  At that point, my brain shut down and I couldn't ask another question.  My first question is, is 1 year with chemo or without?

My husband could not have surgery first due to the lymph node involvement.  My second question is, can he ever have surgery?  I've read your discussion boards and many people have commented that the only way to get a "cure" is to have surgery.

I am thankful I found this website and hope that in the days ahead I can get information from all of you out there who are also dealing with this horrible disease.  I have one really stupid question for anyone or everyone dealing with this:  (Brace yourself) Did any of you drink a lot of milk plus eat a lot of dairy prior to getting this diagnosis?

Living one day at a time!

Jayne