End Stage Of Carcinoid

 

Hello all,

I'm new to the group as a caregiver. My husband is suffering from this horrible disease. We both want to know if there is anyone out there that has lost their loved one to this  cancer and what to expect in the end. Because our Dr CAN'T tell us? and he's the LEADING WORLD AUTHORITY ON THIS. Dr. Larry Kvoles from Tampa Moffitt. We have a leg up on most of you for my husband is a Dr himself. We are currently seeing a great Oncologist here in Celebration Florida, both these Dr's have collaborated with really no answers . All my husbands test results believe it or not come back normal. My husband feels far from normal!!  Carcinoid is highly miss diagnosed and is called the Zebra of cancers. Dr Kvoles told us that he most likely had this cancer for 25 years being miss treated. About 10/11 years ago it was realized Carcinoid. In the colon metastasized to his Liver. Had it cut out but never found the primary. Lived with these weird symptoms for ever it seemed. Up till over 2 years ago things started getting worse, small carcinoid crises but never treated for them.

This past 7 months have been hell on my husband. Ended up in the hosp for 3 weeks with the worst carcinoid crises ever! That's when he received the SAR via IV, because sub-q made him vomit! he was doing pretty good with this therapy BUT couldn't go home unless they found a way to get the SAR at home. He still has his PICC LINE in from this and is able to give IV bolus, yes he still gets a bit sick from this. In addition he's on the pump AND LAR about 3000 micrograms a day and rising. He still feels sick. Remember when one goes on the pump and the SAR/LAD you are no longer able to get that Octri scan. We feel his tumors have progressed and spilling out all of these hormones. We heard that possibly with a constant flow of this drug may stall the tumors? one can only pray.

HERE IS SOME VERY STRONG ADVISED I'D LIKE TO GIVE.. IF ANYONE OF YOU THAT HAS THIS CANCER OR KNOWS OF ONE AND THE CANCER PERSON NEEDS TO HAVE ANY KIND OF SURGERY..PLEASE MAKE SURE YOUR SURGEON PREPS THAT PERSON WITH SAR/LAR BEFORE GOING UNDER THE KNIFE. This happened to my husband 2 years ago and sent him into a huge crises that aided in a 9 min cardiac arrest. The doc knew before hand of my husbands cancer but did nothing.

Is there anyone out there with the same stage as my husband or worse. What levels are you all on. Tell me your symptoms and the like. I'm not sure how much longer I have with my husband. He'll turn 47 in July.

 

Miss Geri

I don't have the same 'stage' as your husband but I have Carcinoid that has metastasized to the liver. I originally had a bowel resection which is when they found the Carcinoid and one of the tumors removed was the primary. Then everything was stable for 4 years. In 2006 I become diabetic and lost 20% of my body weight and had other numerous side effects. November of 2006 I had chemoembolization of the right lobe of my liver but had to fight the insurance company for 3 months to pay for it. In the meantime I had my gall bladder taken out in February of 2007 because the Carcinoid had eaten it and the day I got out of the hospital I received the papers saying the insurance company had to pay for the chemoembolizations so I was able to schedule the left lobe for May (I had to wait till I recouped from the surgery).

 In Dec. 2006 I went on Sutent (chemo) but quit taking it in Feb 2007 because it hadn't worked and the tumors had continued to grow. I've been on Xeloda for 8 months now and things seem stable and 2 of the largest tumors have actually shrunk a bit. I don't have the results from the MRI 2 weeks ago but I think it should be good.

It sounds like your husband has a very good doctor but his symptoms keep escalating. Carcinoid.org is a very informative website that may help and there is a lot of info on the yahoo group for Carcinoid that you could sign up for. It's not a support group but very informative on treatments and symptoms and a Carcinoid specialist answers some of the posts. There are several caregivers that post there.

 Good luck in your search! It must be very, very hard on you watching your husband suffer like this.

~ Debby

 

On 6/27/2008 debbysewing7 wrote:

I don't have the same 'stage' as your husband but I have Carcinoid that has metastasized to the liver. I originally had a bowel resection which is when they found the Carcinoid and one of the tumors removed was the primary. Then everything was stable for 4 years. In 2006 I become diabetic and lost 20% of my body weight and had other numerous side effects. November of 2006 I had chemoembolization of the right lobe of my liver but had to fight the insurance company for 3 months to pay for it. In the meantime I had my gall bladder taken out in February of 2007 because the Carcinoid had eaten it and the day I got out of the hospital I received the papers saying the insurance company had to pay for the chemoembolizations so I was able to schedule the left lobe for May (I had to wait till I recouped from the surgery).

 In Dec. 2006 I went on Sutent (chemo) but quit taking it in Feb 2007 because it hadn't worked and the tumors had continued to grow. I've been on Xeloda for 8 months now and things seem stable and 2 of the largest tumors have actually shrunk a bit. I don't have the results from the MRI 2 weeks ago but I think it should be good.

It sounds like your husband has a very good doctor but his symptoms keep escalating. Carcinoid.org is a very informative website that may help and there is a lot of info on the yahoo group for Carcinoid that you could sign up for. It's not a support group but very informative on treatments and symptoms and a Carcinoid specialist answers some of the posts. There are several caregivers that post there.

 Good luck in your search! It must be very, very hard on you watching your husband suffer like this.

~ Debby

Hello Debby,

Glad to know you are feeling well these days. Wow too many surgeries girl friend!! please tell me what kind of drug is Xeloda ? is it a different form of Sand....or Octrio

My husband doesn't produce the 5hiaa or serotonin (sorry spelling)

 

all his blood work comes back with in norm. but he feels sick all the time

 

 

Hi Miss Geri,

I'm really thankful it's been 14 months since I've been in the hospital. That can get real tiring, real quick, but things got helped so that's the main thing.

Xeloda is an oral form of chemo. A lot of Carcinoid patients are on it and can stay on it long term as the side effects aren't as bad as infusion chemo. The Xeloda turns to 5FU in the body and has been proven to slow down the tumor growth or shrink tumors.

I haven't been on sando but I understand it can make people sick but if your husband is feeling really sick and his markers are okay, you need to keep looking to find out what is upsetting his system. I know it gets tiresome going to doctors and for tests all the time but he deserves to not feel rotten.

Good luck!

HI,

What a weird type and rare type of cancer. I told my husband how come he couldn't win the lottery instead of ending up with this rare type of cancer!  Ha, Ha. My husband was diagnoised over 6 yrs. and Dr. Kovls/Moffit just told us he thinks he has had it more like 12-15 yrs. It took several yrs. and a change of Dr. to find it. His originated site is in the small intestine. By the time it was found it had mets. over both lobes of liver. He could not receive surgery. He does have carcinoid crisis syndrome also and has had several serious crises. He did 7 chemoembolizations @ Hopkins over 3 yrs. ago that did shrink tumors for a while. He cannot receive any more/too dangerous. He has done several trials. Dr. Kovls has referred us overseas to the Erasmus MC in the netherlands for lutetium treatments, we we are now looking into and considering.  An octreotide scan is necessary to see if the cancer cells have the right receptors to accept the lutetium. We're waiting on the scan results. Many patients having this treatment have extended life for 2-3 yrs. As it is so rare no Dr. really wants to give you a life expectancy. I think at times it is harder not to know how long you may have. My husband feels that he is coming nearer to death. However today he felt good enough to drive for his final scan. Crazy, hugh. Carol

 

 

On 7/1/2008 debbysewing7 wrote:

Hi Miss Geri,

I'm really thankful it's been 14 months since I've been in the hospital. That can get real tiring, real quick, but things got helped so that's the main thing.

Xeloda is an oral form of chemo. A lot of Carcinoid patients are on it and can stay on it long term as the side effects aren't as bad as infusion chemo. The Xeloda turns to 5FU in the body and has been proven to slow down the tumor growth or shrink tumors.

I haven't been on sando but I understand it can make people sick but if your husband is feeling really sick and his markers are okay, you need to keep looking to find out what is upsetting his system. I know it gets tiresome going to doctors and for tests all the time but he deserves to not feel rotten.

Good luck!

thank you so much I 'll look into it

 

On 7/3/2008 shitzu wrote:

HI,

What a weird type and rare type of cancer. I told my husband how come he couldn't win the lottery instead of ending up with this rare type of cancer!  Ha, Ha. My husband was diagnoised over 6 yrs. and Dr. Kovls/Moffit just told us he thinks he has had it more like 12-15 yrs. It took several yrs. and a change of Dr. to find it. His originated site is in the small intestine. By the time it was found it had mets. over both lobes of liver. He could not receive surgery. He does have carcinoid crisis syndrome also and has had several serious crises. He did 7 chemoembolizations @ Hopkins over 3 yrs. ago that did shrink tumors for a while. He cannot receive any more/too dangerous. He has done several trials. Dr. Kovls has referred us overseas to the Erasmus MC in the netherlands for lutetium treatments, we we are now looking into and considering.  An octreotide scan is necessary to see if the cancer cells have the right receptors to accept the lutetium. We're waiting on the scan results. Many patients having this treatment have extended life for 2-3 yrs. As it is so rare no Dr. really wants to give you a life expectancy. I think at times it is harder not to know how long you may have. My husband feels that he is coming nearer to death. However today he felt good enough to drive for his final scan. Crazy, hugh. Carol

 

carol you sound like us!!! same issues it seems..Dr Kvols banned my hubby from driving until his crises are under control. You are going overseas!!! on your nickel? wow did he get the scan results. My hubby barely qualifies for anymore Octreo scans due to the amound of Sando he's taking. How big are your husbands liver tumors?

he had 7 chemo and still he's very sick? can you say that procedure didn't work? we don't know where his primary is? yep my hubby was told by Kvols to that he's had it for an additional 15 + the 10..

We saw Dr. today for scan results, he does have the necessary receptors to have lutetium treatment in the Netherlands. Scan showed tumors are still just in liver area. Yes we will have to pay, however our Dr. knows someone directly who works w/medicaid and is going to write to him to see if they may cover a portion??? The chemoembolizations did shrink the tumors treated, however he now has new ones and cannot have anymore chemoemb. We are really struggling w/ decision to do this treatment or not. He's not sure if he can even travel that far as he is in pain most of the time. He is on oxycotin & vicoprofen for pain and monthly sandostatin injections and also I give him shots at home as needed. Carol

 

On 7/9/2008 shitzu wrote:

We saw Dr. today for scan results, he does have the necessary receptors to have lutetium treatment in the Netherlands. Scan showed tumors are still just in liver area. Yes we will have to pay, however our Dr. knows someone directly who works w/medicaid and is going to write to him to see if they may cover a portion??? The chemoembolizations did shrink the tumors treated, however he now has new ones and cannot have anymore chemoemb. We are really struggling w/ decision to do this treatment or not. He's not sure if he can even travel that far as he is in pain most of the time. He is on oxycotin & vicoprofen for pain and monthly sandostatin injections and also I give him shots at home as needed. Carol

wow you guys are between a rock and a hard place..I can't imagine being in your shoes. Do you know if the treatment in the Netherlands will work? or even get a positive responce. That's good news that your doc has connections with Medicaid. I don't think my husband could make a trip like that either..he has a time of it traveling to Tampa from Orlando to see his doc. We don't have medicaid/medicare could be because of us being young? Who is your specialist here in the states? Do you know what kind of hormone release his tumor produces. My husbands produces this crazy one that not many do..catecholamine . So the sando given by pump and LAR are working on a marginal bases. It's very easy to push him into a crises. Ask your doctor about the pain patch..fentinal..we get ours from Walgreens BRAND NAME MYLIN very important you ask for this brand..why because your husband as mine can control the amount given by yes cutting them..they look just like a sticker. YES IT STATES DON'T CUT THEM BUT WE HAVE BEEN FOR OVER 2 YEARS. YOU WILL HAVE TO MAKE THAT DECISION YOUR SELVES!

 These are dangerous don't get me wrong but if given the proper dose will manage pain. We can contol the pain and the amount without my husband being over dosed and taking the fully prescribed dose. He started out that way and he felt disconnected and yucky. My husband is a retired doc so he knows what he's doing. BIG MISTAKE IF YOUR WALGREENS GIVES YOU DURAGESIC PATCH POUCH!!!  OR ANY POUCH! CAN NOT CUT THOSE!!!! the drug will ooz out and absorb to much to fast and your husband will be hospitalized. The brand MYLIN has been a life savor for my husband.

I want to give you a link to a group I joined a couple weeks ago that has helped me http://www.acor.org/carcinoid.html and this was just given to me which I am going to join caregivers4carcinoid group.. by yahoo  I think these will help you as it has for me.

Gerianne