CancerCompass message board discussion started by mardilove on 5/6/2008 http://www.cancercompass.com/message-board/message/all,23780,0.htm Sun, 06 Jul 2008 00:00:00 GMT Sun, 06 Jul 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Good Evening Colon Cancer World~I am posting this evening because I am feeling so helpless.  I have read postings here since my husband was diagnosed in November on his 57th Birthday with Stv IV CC w/Liver Mets, as one oncologist said to me, "look at them, they're all over the place" ..regarding the number of tumors in is liver.After 9 rounds of Folfox w/Oxi, he is is now on is second round of Folfox w/Oxi and Avastin.  At this very moment he is resting.  Two moments ago he was throwing up - the second time today.  This is new for him and me.  I feel helpless to sooth him, he just wants me to go away.  After 28 years of marriage, to find I cannot soothe him is devastating.   I can't get him to drink water or Gatoraide, very little anyway.  He lost 9 pounds between Avastin #1 and #2 treatments.  He isn't eating, hard to get him to get a whole Carnation Instant Breakfast down -Boost/Ensure too thick and sweet for him.Has any one had similar experience as my Husband.  I would feel so much better if I knew this isn't abnormal.  I feel so helpless and I am at a complete loss, my heart is breaking for him.  There are two who post here that have similar situations as my husband's and I have used both their posts here as a guide for my husband's treatment.  I would welcome your comments if that is okay and if you don't mind.Cptmac and Miracle MaryA Loving Wife who misses her HusbandThank you      mardilove Tue, 06 May 2008 00:00:00 GMT I have been on chemo 3 times and currently on Folfox with two to go.  I have in the past, and currently have experienced  Nausea, throwing up, unable to eat and sometimes even difficulty drinking anything. I have had to force myself all the time to eat and drink and I do it.  I'm not saying that your husband can do the same thing, but this is not an abnormal situation for you.  If it continues all the time and he continues to loose weight, the Doctor can give him someting to help.  I know it's tough but I have had to fight the same side effects 3 times now.  I'm winning this battle after three years.  Hang in there and keep the faith.  We all pray for each on this post, and, because many of us have faced the same thing we can sympathize. Arnold Tue, 06 May 2008 00:00:00 GMT Although I never took avastin, I initially had a lot of nausea due to my liver surgery and then my chemo.  They put Zofran in my chemo and none of the drugs worked.  But, I drank coca-cola.  That worked.  That even worked in Doc Hollywood fro the kids nausea.  It's worth a try.I'm sure you've kept your doctor abreast of this.  Their the ones who suggested I drink Coca Cola.  The best part was, I'd given up my favorite drink when I was diagnosed.  Who knew that this would be the miracle drink for me.  Also, after eating a small snack and drinking apple juice at my oncologists appt, I threw that up.  He thought perhaps I wasn't trying.  When that happened, he suspected a kidney infection which could cause nausea.  Sure enough, I had one.  That cleared up and the nausea went away.  As for eating.  There was a time where it was extremely difficult for me to eat and keep my weight on.  I put several bowls of different kind of cereal throughout the house.  Since my liver was resected, it was important that I eat protein, and my favorite cereal, Cap'n Crunch, had the most protein.  So I had several different kinds of cereal throughout the house.  I walked a lot (that helps with digestion) and whenever I passed a bowl, I had to eat even a little bit.  After a while, I could finish a whole bowl of cereal. He doesn't have to eat cereal, but he has to eat something.  I liked cereal because I could keep it out all day and it wouldn't get stale.  But it is trial and error.  And I can understand where your husband is coming from.  When I'm sick, I don't want to be around anyone.  But offer suggestions.  Try different things.  Things will taste different so you don't know what he may or may not like.  But he needs to eat.  Although I wasn't hungry, and I hated the boost and ensure at first, my husband encouraged me.  Eat it even if you don't like it.  You need to eat to live.  This sunk in and helped me.  I would eat whatever I needed no matter how bad the taste, so that I could live.  I got the high protein ensure and boost shakes and made sure I drank at least one a day.  Soon I was able to have more.  Trial and error, to heck if you waste money figuring it out.  On occassion, and on doctors orders to eat as many calories as possible, Fast food being the best food for me at this time, I even went and had sausage mcmuffins from McDonalds.  Even though it took me a long time (months) to get my appetite back, it did come back.  I told my friends to quit telling me I looked good because I lost weight.  Losing weight was not good for me.  Encourage me when I gain weight.    I hope some of this may help.        Cptmac Tue, 06 May 2008 00:00:00 GMT Great post cptmac.  I forgot - drinking coke has helped me also.  You gave him many great ideas.  I just forced myself to eat times just as you have. I love pizza, cheeseburgers, etc (who doesn't !!) and I hate having to eat when it just won't go down.  You must do what you have to do.  I put on 10 pounds during the month Of Jan knowing I would need that extra weight later on.  With three weeks to go, I have lost the ten pounds  but I can afford to loose 5 more if that is the case.  Arnold Tue, 06 May 2008 00:00:00 GMT And, exercise is effective also.  I hit the gym 5 days a week and do 10 to 12 miles on the stationary bike Arnold Tue, 06 May 2008 00:00:00 GMT Hi,We found that fresh juices, not sweet, helped a lot.  Aloe Vera juice at the health food store is refreshing, but not sweet.  Fruit smoothies with a touch of yogurt to help coat the stomach.  The doctor said to drink milk, but my husband found it hard to keep down.Fresh fruit like tart apples helped along with fresh berries.I have always given my kids cola syrup when vomiting.  It does work eventually.  It is hard to find now a days, but I think Walgreens still carries it.   Cola with the fizz is not good.Lynette Lynette524 Wed, 07 May 2008 00:00:00 GMT Arnold~Thank you so much for responding to my post!  I was very anxious that night and didn't think I would make it through, let alone my Husband!   I think I will be posting much more often as these new symptoms show themselves, just to be reassured, as you said.  I was so happy to see the responses.  That night I posted I waited for someone and thought no one would respond. What relief to see several posts!Thank you!    mardilove Thu, 08 May 2008 00:00:00 GMT Arnold, Cptmac, Lynette524~Please forgive the post to "Arnold"...I was trying to respond to each of your posts individually, but then saw my post went to the bottem of the heap!  Not familiar with the way these work yet.OH MY!!!!  You cannot imagine the JOY I am experiencing at this moment!!!!  Since my initial post, I have been watching my Husband just be in bed and looking as though he would not make it to the next minute.  I was peeking my head in and seeing if his chest was rising and falling.  I absolutely could do nothing else.  I couldn't concentrate on paying the bills or making the phone calls or working my job (process health care claims at home for a major insurance co).  I was so scared he was not going to be here anymore!  His last shower was a week ago yesterday...this is a man who took a shower every day upon waking and sometimes again later if he had been doing manual labor of some sort.  AND, he wouldn't take any of his meds!  AND not eating.  The most he has eaten in the past 8 days is ALMOST 10 oz of carnation instant breakfast (I added a bit of heavy cream to the whole milk and an all natural, high calorie and protein shake mix to that - anything for calories)!  Yesterday total consumption was 12 oz of apple juice, very lightly sugared.  SO, and I must say this was a challenge as he was a bit irritable at me "repeating myself" about him not eating - the challenge was to read your posts out loud to him.  Don't you know he was all  - nodding of the head, "Cereal??? I was thinking about that the other day" he says.  Coke?....he just looked at me in wonder.  Please forgive my not remembering at the moment who said that their spouse said the patient needed to eat to live...but that is just what I wanted to tell him...and when I did he still didn't eat.  Hence, my total frustration and fear.The Oxiplatin (sp?) is causing him a great deal of peripheral neuropothy...especially that he has it in his throat.  It is very difficult for him to swallow.  I feel so sorry for him!  As well, he has suddenly developed a huge case of acid reflux...something he never experienced before this beast was upon him...and it is severe. The doc said to try Zantac 2x daily.  However, he developed a severe bout of hickups and belching and yet no relief from the Zantac so we quit that.I was so delighted that he finally agreed to let me read your posts to him that I could just get up and shout!  He was impressed and grabbed a cereal box from the pantry and was reading it.  I had to come here and post my thanks to you immediately!!!  I do pray he will at least give SOMETHING a try now.Thank you again!  I appreciate your responses so much I am not proofreading this post as I can't wait to get downstairs and see if he has at least decided what he might want to try and eat.In appreciationMarcella       mardilove Thu, 08 May 2008 00:00:00 GMT Again, I have had the same problems, acid reflux, difficulty swallowing, hiccups twice , each lasting 8 days!!  Sorry to say, this all seems to go along with chemo.  Tell you husband I know it's tough, but to hang in there!!  ( By the way, I'm 71) Arnold Thu, 08 May 2008 00:00:00 GMT Acupuncture may be able to help with some of these problems, especially nausea.    Roz Rosalind Thu, 08 May 2008 00:00:00 GMT H!  My Mom was diagnosed with stage IV colon cancer met to liver and passed away slightly less than a year later last October adn then my Dad was diagnosed with Appendiceal cancer with spread to his abdomen in Febrruary and I am a childhood leukemia survivor, so unfortunately I have a lot of experience with chemo!First check with your doctor and make sure it is not progression of disease or a blockage that is causing these symptoms.  At the end for my Mom, she could not eat or drink.  My dad had an issue with that it was a blockage and is now doing better. Check with your doctor and see if you can take Pepcid for the reflux... less harsh that the other stuff.  Try a ginger pill twice a day for nausea.  See if doctor will prescribe Decadron, it is a steroid that increases appetite.  My Dad goes on Decadron pilss three days following chemo treatments and has definitely helped.Sometimes it is very spicy or very sour food that may work as well.  For me and my Mom, we had to have tomato sauce!  Dad seems to really like Mac and Cheese, French Fries and Kentucky Fried Chickem... we joke that it is strangely greasy food what he craves, can handle and taste.  It is a lot of trying things!  HE also likes those Nilla Wafers and tons of Jello (although Jello has little as far as nutrient and calories, it at least gets him fluid)!  I also bought a snow cone machine that helps with fluid intake!To keep weight on my Mom we used the Carnation Instant Breakfast with Heavy Whipping Cream and Whole milk and then added chocolate syrup (if chocolate flavor) or Strawberry Quick (if strawberry or vanilla flavor) to kick up the calories, we had her drink to 1000 calories and she got down two a day... the doctors were amazed we kept all the weight on her!Peanutbutter is a great source of calories and good fat too.Have your husband try sucking on sour candies to stimulate his taste buds.  It is hard to force things on them.  I remember when I was sick... it is hard as the caregiver to put yourself in the place of the sick patient and how they fill.  I was in the hospital four months straight when I was sick and the first month I wanted no light or TV, it made me nauseaous.  It is a very hard place top be, the patient or the caregiver.  I am sorry so many of us go through this and no one truly understands until you are faced with the situation.  Sometimes I think it is harder being the caregiver than when I was the patient because you feel so helpless and you so want to take away the pain and hurt and can't.  Hang in there and just try tons of different things and let us know how you are doing!   Msmittens Thu, 08 May 2008 00:00:00 GMT Again, Thank you!  to you that have replied...I just checked here quick to see if there were any responses.   Last night my Husband actually ate a small bowl of cereal...my cereal which he usually thinks is too sugary.  I was delighted.  I have to run to the store but so appreciate your responses and later when I have more time will read them in more detail.  Thanks for the news about the hickups...they are so hard to watch ..it feels to me like they must hurt terribly.  I have done Carnation, and added heavy cream and a all natural protein powder and whipped it up with whole milk..anything for the calories.  Someone from the Navigator portion of the Am. Cncer Scty is sending me a very high calorie 'base" mix that I can add flavorings too as a drink for him.  Will share here with you.  I also have juiced blueberries, strawberries, rasberries, cranberries...taken the seeds out and boiled them down to a syrup hoping I could incorporate these flavorings into a high calorie mix for him.  So far, he's not interested.  Back soon, thank you all so much!  Thank you for this site!!!  It helps to know...that even 71 year youngin's (Arnold) are managing this...helps me see a brighter future for my 57 yr old 110 lb Hunk of a Husband !!!!Marcella  mardilove Thu, 08 May 2008 00:00:00 GMT Smittens~ Please accept my apology for being so ignorant as to not mention how sorry I am at the passing of your Mother.  I hope that the fight you have with your Dad now is very successful.  Apparently you are here with all your experience to help support those like me.  Thank you much and I will be sure to include all of you in my prayers!Thanking you!Marcella mardilove Thu, 08 May 2008 00:00:00 GMT Hi Mard, For your husbands nasuea maybe try any variety of chicken noodle soup starting with mostly broth and gradually adding more noodles....it has a soothing effect on stomach lining as well as a good amount of protein.  Also chewing peppermint gum, (peppermint has chemical properties that soothes stomach upset)  along with saliva (that contains natural enzymes that coats stomach lining)  hopefully will be helpful~Trenttd trenttd Thu, 08 May 2008 00:00:00 GMT Hi Trenttd~Thanks for those suggestions.  He was eating chicken noodle soup about 10 days ago, but isn't interested lately.  Thanks for the other advice about mint items. Today, he has been sleeping all day.  He hasn't been up once to do anything more than go to the washroom.  No eating, no sipping water or juice and he just wants to sleep.  No regular meds or anti naussea meds or pain meds taken either.  He just wants me to go away.  Scares me.   Anyone have the same experience?  I don't know how we do this to be quite honest, rips my heart up.Mardilove (Marcella)and thanks again!  mardilove Thu, 08 May 2008 00:00:00 GMT I would suggest that you contact the doctor ASAP.and bring him up to speed on your husband's condition.  It doesn't look good and maybe the doctor can help you.  I don't want to alarm you, but it sounds like he is giving up.  Good luck and God bless.  Please keep us posted. Arnold Fri, 09 May 2008 00:00:00 GMT Sorry to hear about your husband.  When my dad had colon cancer he was the same way when he was going through chemo.  He didnt want to eat he said everything tasted bad.  He would lose weight while on chemo.  It does sound like your husband is very depressed.  I would talk to the drs about that.  Maybe you can give him something.  Is he still getting chemo now?  I would definately tell the drs about him not eating and sleeping alot.  It could be the disease or it could be depression.  Good luck  Mindy Mindybobo Sun, 11 May 2008 00:00:00 GMT Hi Mindy~Thanks for sharing aobut your Dad.  Today, my husband got up around 1:30pm ..then he ate a couple of slices of orange, half and egg, and 1 piece of bacon.  Then, off to bed he went and is still there.  I try to talk to him and he will say he needs to be quiet now.  To say I miss him and am completley lonely, would be an understatement.  He was prescribed a milk anti-depressant but he doesn't feel he should take it.  I have never known him to be so stubborn,  So yes, he could be depressed, which wouldn't surprise me.We have an appointment with the oncolohgist this next Tuesday and you can bet I will be relaying all info to the doc.  I am worried though, it scares me terribly that he isn't getting up and that he is losiung a tremendous amount of weight.Mardilove     mardilove Mon, 12 May 2008 00:00:00 GMT Hi I know how helpless you feel.  I felt so bad that I couldnt help my dad.  When he got cancer he did the same thing your husband did.  He didnt want to eat with the family, he would eat on the couch by himself.  He had no interest in talking on the phone with his brothers.  He was disstancing himself from everyone.  I read somewhere that they do that.  Im glad your husband ate something.  He could be losing weight because he is not eating well.  We gave our dad ensures but he really didnt even want to drink those either.  Hopefully when you talk to the dr's you can get an better idea if how he is reacting is depression or from the disease.  What do the dr's tell you?  Is he still getting chemo?  Is he on any pain killers?  Mindy Mindybobo Mon, 12 May 2008 00:00:00 GMT Hi,I think it's really hard for us to understand the incredible fatigue that cancer patients experience.  Everything contributes to it-- the treatment, the meds, and the disease itself.  Interaction with other people does take energy, and it sounds like your husband does not have any to spare.  It is definitely worth discussing with his doctor.  I think it also is worth looking into treatments like Reiki which might help him feel better and don't have negative side effects, if he is receptive.  He may just need to be left alone for the time being.    Roz Rosalind Mon, 12 May 2008 00:00:00 GMT My situation was pretty much the same.  If had gone from 180 to 110 lbs and was retreating and not getting meds, not eating, etc I will assure you that my wife would have contacted the docs ASAP.  She would not have left me alone.  I have been through this twice and I know it is very difficult, but you have to force yourself and be strong, both caregivers and patients.  My wife would have picked me up. put me in the car and driven me to the Docs!! Arnold Mon, 12 May 2008 00:00:00 GMT Greetings to all ~I want to assure all of you who have responded so faithfully with so many different suggestions and options that I have been in constant contact with the Doctor/nurses.  I appreciate your concern very much.  I have spoken to so many professionals in the field regarding all my concerns and the variety of opinions vary as much as the variety of my questions.What I have gathered from all of you is that these symptoms are not unusual, and that they can be treated, which is a great relief.  I get so frightened but then when we do have an opportunity to talk, he makes complete (most always) sense in the decisions he has made...like forgoing certain meds.  He has never been one to put pills in his mouth and very much hates having to.  This is not to say that I will not be discussing this with the doctor tomorrow.  In fact, I will be mentioning everything suggested here just to cover all bases. Last week, when I talked with the Doc, he was going to schedule an Esophogial exam of some sort as well as a Gastro Something?  to make certain there is nothing going on in that part of him.My husband is a tender, sweet guy who couldn't hurt a thing - a muscian and photographer - people all over simply enjoy him.  He can't eat if he is upset ..as well, food for him is a necessity to maintain life ..he isn't joyous over food like I am.  He does start another round (#3 of 4) of chemo tomorrow.  I surely do not understand why he gets the hickups so bad or the belching so severe either.  It seemed when he would excert himself, like just in talking, it would bring them on more severely or bring them on if he wasn't having them at all.  I understand now why he did not want to have any conversation at all.  I read on one of the reputable sites regarding cancer fatigue that if you sleep almost 24/7 that it is possible for the doctor to prescribe something so that he can have awake time.  Is anyone familiar with what that might be?  I also wonder if the sleeping is his body needing that rest to heal itself?  Does anyone have a thought regarding this?He does have a desire to eat and is doing more on his own of regular food, but not enough in my opinion.  Today he had several glasses of whole milk and a bowl of cherrios, and that is progress, I am happy to report.He also has a few bouts with incontinence and I see others have had that as well.  I am so sorry about this for all of you as it must be very disconcerting.  I look forward to hearing your thoughts, they are very helpful to us.  Are there any further suggestions you might have for us that we should inquire about at our oncology visit tomorrow?God BlessMardilove      mardilove Tue, 13 May 2008 00:00:00 GMT Hi - I am so glad you are going to see the doc soon and that he is eating something.  Sounds like he waking up!! GOOD.  Hang in there dear lady and be strong.  He is very, very fortunate to have you during these times.  My wife has helped me so much  - I don't know what I would do with out her.  Music and photography are very, very big in my liife too.  We are going camping as soon as possible and I can't wait to get my equipment out. Arnold Tue, 13 May 2008 00:00:00 GMT Hi ,My father is facing the same problem of vomitting and nausea.He was dignosed with Gastric cancer Stage III in Dec 2007.He is underhgone under 3 surgeries and 1.5 caemo.Now,doctor has assured that everthing is cured and there is no need to take caemo henceforth and only regular check-up is required.However,now he is feeling quite depressed and under fear that there might be relapse.He is not able to eat/drink. He is having trouble in drinking water but not other drinks like juice,coconut water etc.He has lost his weight a lot and feeling tired.We are from India.Our normal food includes rice,vegetables,chappati,fruits,milk etc.Could you please suggest any options that may be suitable to my father? Manasi Tue, 13 May 2008 00:00:00 GMT Sorry, I cannot help you with the last post...I am not that familiar here.  Please forgive me.  Perhaps someone else can please direct her to where she can find the info she needs please? Dear Everybody~Saw the doc, doing ct scan for hubby, no chemo today, wish us luck and prayers please!Off to meet him at ct place.  God Bless All ~Mardilove mardilove Tue, 13 May 2008 00:00:00 GMT Hi all...I have to be careful as to what I share from now on as our family may be viewing this correspondence.  I have not shared with the family yet many aspects of what is happening with my husband.  I would hate to have them find out here and not directly from my loving voice.  I am sure you understand.  Any response given the touch of sensitivity would be greatly appreciated.Between the Infusion Therapy area and the hospital, my poor husband was unable to have his CT scan yesterday.  He is scheduled today at 1:30 and hopefully we will find out today what that scan shows.The doc prescribed a coupound of bendadryl, and anti-naussea drug and the steroid someone else spoke about here that starts with a "d".  So far, two applications down for him and he is much better.  Especially after having so many units of saline yesterday for dehydration. Your prayers and positive thoughts are most welcome for my sweet husband if you are in a place to give them.Mardilove  mardilove Wed, 14 May 2008 00:00:00 GMT mardilove you are describing almost identically what happened to my mum on folfox avastin/oxali....the nausea....the staying in bed etc etc.  she developed a toxicity to 4fu so ask your docs to check hubby's blood plasma level as that is more accurate than using BSA to calculate the dose.   anyway, mum was finally hospitalised for two weeks due to drug toxicity.....her cancer had progressed on treatment and we were all devastated.  then she was started on erbitux and irinotecan and i swear she is a new woman....within one month she is going out for long walks, no diarrhoea or any other side effects apart from a rash on her nose.....we also started her on liquid zeolite which i think might be helping immensely....it can't be taken with heavy metal chemo like oxaliplatin.  she only tolerated 3 rounds of oxali and a further two of 5fu/avastin, but she has had four rounds of erbitux/irinotecan and is sailng through them.....there is light at the end of the tunnel so hang in there and don't give up xxx daisychain Thu, 15 May 2008 00:00:00 GMT If it doesn't have FDA approval, how do you get it?  If it has been used by less than 200 people over three years, what is the problem.. I have hado 3 times and would have given anything to have use of this.  How do you get on board on this? Arnold Thu, 15 May 2008 00:00:00 GMT  On 5/6/2008 mardilove wrote:Good Evening Colon Cancer World~I am posting this evening because I am feeling so helpless.  I have read postings here since my husband was diagnosed in November on his 57th Birthday with Stv IV CC w/Liver Mets, as one oncologist said to me, "look at them, they're all over the place" ..regarding the number of tumors in is liver.After 9 rounds of Folfox w/Oxi, he is is now on is second round of Folfox w/Oxi and Avastin.  At this very moment he is resting.  Two moments ago he was throwing up - the second time today.  This is new for him and me.  I feel helpless to sooth him, he just wants me to go away.  After 28 years of marriage, to find I cannot soothe him is devastating.   I can't get him to drink water or Gatoraide, very little anyway.  He lost 9 pounds between Avastin #1 and #2 treatments.  He isn't eating, hard to get him to get a whole Carnation Instant Breakfast down -Boost/Ensure too thick and sweet for him.Has any one had similar experience as my Husband.  I would feel so much better if I knew this isn't abnormal.  I feel so helpless and I am at a complete loss, my heart is breaking for him.  There are two who post here that have similar situations as my husband's and I have used both their posts here as a guide for my husband's treatment.  I would welcome your comments if that is okay and if you don't mind.Cptmac and Miracle MaryA Loving Wife who misses her HusbandThank you      The vomitting and the weight loss can be  side effects of Avastin and Oxilaplatin.  But I made a conscientious decision  to do everything in my power  to help against the weight loss. You cannot control your cancer but you can work against the weight loss.  I forced myself to eat and to drink Boost and more Boost.  I had 11 treatments and my red blood count and white bood count were  so poor , that we had to stop the chemotherapy.  This was 2 years ago.  I have gained all my weight back, my hair has grown, but most of all my  cancer has also stopped growing. So hang in there . This is a new treatment and it is very helpful.  Siegrun Thu, 15 May 2008 00:00:00 GMT Daisychain - thanks for the info.  I spoke with my Husband's Oncologist today and spoke to him about blood determination vs. BSA for toxicity.  He didn't seem to think that would make any difference in my husband's condition.  Husband had total of 9 folfox/oxi chemo's and then 2 with Avastin added.  After the second Avastin, he went down hill extremely fast.  Went from 126 to 119, two days later to 117 on tues of this week 109.  Sleep, sleep, sleep and can't eat, obviously.  Now, oncologist prescribed BDP (benedryl, some steriod name I can't remember and an anti naussea drug that starts with a P...sorry, can't remember) in form of suppository hoping this will increase his appetite.  I am wondering how is it determined by the blood plasma level if the chemo is toxic?  Since my oncologist didn't seem to think this is the case, and that he didn't indicate he was willing to do this test..I don't know how i can convince him to do so...can you help in this area at all.  I would feel more confident if I could sound like I know what i am talking about when I talk to the Doctor again.  I would like to insist he perform this test.  Would appreciate any info to help me convince him to do so.  Hubby had to have saline drip because he was so dehydrated.  I tried to get Hubby into emergency twice during the previous two week period as he has been so sick - pain in cecum (original cancer) , extreme hiccups and belching and acid reflux to the point of pain and so consistent he couldn't eat because something burning was coming up at the same time.Doc is calling for hospice tomorrow.  Hubby diagnosed at 57 years old on his birthday this past November with stage iv extensive liver mets.  Doc says if hubby gets healthier and gains a bunch of weight, he will put him back on chemo starting with irinotecan regemine.  Either way, doc thinks I should let the kids know Dad might not be around more than another month...hubby is also very wobbily on his legs and has been injesting oxycodone every two to 4 hours for pain.  He went down hill so fast I can hardly believe it.  I am actually in a state of shock and haven't told hubby this news from the doc.  Initially, doc thought maybe hubby's cancer had moved to his brain, but that wasn't the case.  Regards to your Mother and here's praying she will continue her good stride!God Bless  mardilove Fri, 16 May 2008 00:00:00 GMT Daisychain ~ I forgot to ask what "zeolite" is? mardilove Fri, 16 May 2008 00:00:00 GMT Mike, thanks for the info...i asked the oncologist today about the Davant and he said he wouldn't use anything that isn't out of clinical trails.  Help!!!!      mardilove Fri, 16 May 2008 00:00:00 GMT Studies Point To Benefits Of Personalized Chemotherapy Dose Management In Colorectal CancerNewsRx.com May 8, 2008Can a blood test improve treatment outcomes for colorectal cancer patients? Recently published studies indicate that personalized chemotherapy dose management -- measuring drug levels in patients' blood and adjusting them for optimal dosing -- can substantially reduce severe toxicity and improve efficacy in colorectal cancer. A Phase III randomized study of 208 colorectal cancer patients, by Erick Gamelin, M.D., Ph.D. et. al., was published in the May 1 issue of the Journal of Clinical Oncology (JCO). It found that metastatic colorectal cancer patients whose dose of 5-fluorouracil (5-FU) was personalized based on results of regular blood tests experienced reduced severe toxicities and nearly doubled response rates compared to patients who received standard 5-FU dosing based on body surface area. Additionally, patients who received personalized dosing experienced a 48 percent relative improvement in survival at two years. 5-FU is the cornerstone chemotherapy in most treatment regimens for this type of cancer. The current standard-of-care in dosing 5-FU is based on body surface area (BSA) and is calculated using patients' height and weight. In the JCO study, personalized dosing was based on blood tests to measure the actual level of the drug. The study demonstrated that only 25 percent of colorectal cancer patients achieved optimal chemotherapy blood levels when dosed by BSA. Seventeen percent of the BSA-dosed patients received toxic levels of the drug, while 58 percent were under-dosed. The JCO study, "Individual 5-fluorouracil dose adjustment based on pharmacokinetic follow-up compared with conventional dosage: Results of a multicenter randomized trial of patients with metastatic colorectal cancer," evaluated patients being treated with 5-FU in combination with leucovorin. Half of the patients were dosed with 5-FU based on BSA. The other half were initially dosed based on BSA, with subsequent cycle doses adjusted based on blood tests that measured the actual concentration of chemotherapy in the patients' blood plasma. The primary endpoint was tumor response; the secondary endpoint was treatment tolerance.  check out natural cellular defense zeolite on the internet. I don't think I am allowed to post weblinks for it on cancer compass.  That said, he cannot take it with oxaliplatin because it will remove oxali from his system.  So, he can only take it if his doctor stops giving him his current chemo. If you send me a private message, I can responsd with the info you require.   My mum could not metabolise the 5fu and this is part of the reason she went downhill so quickly. she had too many tumours to count on her liver and also mets to her lungs. Since stopping 5fu/oxali and starting irinotecan and cetuximab she is a new woman...100% quality of life again...eating, drinking and walking.  I had thought in Dec she was not going to make it past the end of January, but she is doing really well.   daisychain Fri, 16 May 2008 00:00:00 GMT yes, I did see this immediately and did convey it to our Oncologist.  I will printe or email to him and ask him to perform this.  thank you....up all night tonight, kinda don't want to sleep tonight.  Thanks again. mardilove Fri, 16 May 2008 00:00:00 GMT So sorry you and your husband have to go through this.  I know it is shocking when it happens so fast.  My dad did good for 18 months and then all of a sudden went down overnight.  We where in denial and then we had to except it.  We where with him all the time and supported him and the number one thing is to make sure they are comfortable.  Once the Dr told us about hospice we didnt try to force him to eat because we realized at this point he couldnt eat it was the disease taken over.  The reason im telling you this is because if I had to do it all over again with my dad I would of done it diferently.  My mom didnt give him his pain meds every 4 hours because it knocked him out and she wanted to be with him but that was not good for him because I beleive he suffered more pain then he should of.  Its important you give pain meds every 4 hours so they dont have break through pain.  I would definately tell your kids because they are going to want to spend as much time as possible with him at this point.  If you ever want to talk please feel free to email me on this site.  Mindy Mindybobo Fri, 16 May 2008 00:00:00 GMT  On 5/16/2008 mardilove wrote:Mike, thanks for the info...i asked the oncologist today about the Davant and he said he wouldn't use anything that isn't out of clinical trails.  Help!!!!  The doctor said he thought my husband won't be here much past another month. Scared silly!!!!    I have to tell you that logic is crazy not to use a drug that hasn't finished trials.  The doctor just scared the daylights out of you and said your husband has a month to live and won't try anything.  Not my kind of oncologist.  Are you seriously telling me he won't even research it?  I think he is just lazy and doesn't want to do the paperwork for a compassionate use.  If he were to call the company up they would definately be willing to give it a shot.  The problem is clearly your oncologist.  I'm sorry.  I know what I would do if I were you and its not listening to the oncologist.Let me just explain to you a little more about DAVANAT.  It's a SUGAR designed to wrap around the chemo.  The cancer cells have a Galectin-1 receptor that is overexpressed on the cell surface that DAVANAT likes to bind with.  Since the chemo piggy backs on the DAVANAT and the DAVANAT binds with the Galectin-1 the chemo gets into the cancer cell and destroys it.  DAVANAT is mixed with 5FU - a chemo drug that has been around 30 years.DAVANAT by itself doesn't do anything.  If you or I took DAVANAT right now -what would happen - absolutely nothing not even a sugar high.  When you mix it with Chemo it binds with it and becomes a targetting agent.  It shouldn't even be classified as a drug but because it goes into your arm that what it is.  It is called an excipient.   I'm rambling - perhaps you should just call me and I will explain.  I will do what I can to help but that's not going to be easy with a grumpy oncologist.  Just so you know - I got a compassionate use for a friend in 28 days.  So there is hope.  There are ways to get it faster but you need a freindly doctor.  Mike --Message edited by CancerCompass staff. For personal protection, phone number removed. Consider private reply. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html--   Topgun Fri, 16 May 2008 00:00:00 GMT Are you a doctor Mike?  What is your background?  Many of us might need davanat in the future and it would be helpfull if you share you specific experiences.  I would also recommend that you  back off on the Oncs.  You don't have the info and case history that they have. Arnold Fri, 16 May 2008 00:00:00 GMT Wondering how to convince our oncologist to run the toxic test by blood plasma?  I asked him but he said they did the BSA.  Of course he does want to convince me as he is probably assured that this is the best measure.  At this point, I am not willing to miss checking one thing.Any suggestions?  Any help would be appreciated!   mardilove Sat, 17 May 2008 00:00:00 GMT Tell him you want the toxic test and if he does not agree, ask him why.  Arnold Sun, 18 May 2008 00:00:00 GMT