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"You know that rare cancer that Steve Jobs had."

dawn98
Posts: 3
Joined: Sep 2011

Or more officially Metastatic Panceriatic Nueroendcrine Tumors. No wonder we're not popular. So are there any more of us out there?

mr steve
Posts: 286
Joined: Sep 2009

My wife just lost her fight with it. She had every thing from surgery to chemo. It had already met to liver & ovaries when she started treatment, that lasted over 4 years. There are some new drugs that have come showing so promise. Good luck in your treatments.

Steve

Suzi_cue1961
Posts: 17
Joined: Jul 2012

Dawn,
My husband was diagnosed in December, 2007. I will say this has been a roller coaster. You never know from month to month when you go to doctor what to expect. Especially since it all depends on blood work or scans. My husband is about to start the drug Sutent. I has only read the statistics of this drug and it's side effects. But I have not spoken to anyone that has actually been on it for this type of cancer. You should be able to read my story about our battle with this dreadful disease. If you cannot I will repost it here. What treatments have you encountered? And are any of them helping at this point?
Suzi_cue1961

mnquin_13
Posts: 1
Joined: Aug 2012

I was diagnosed with Hepatitis C1b back in October 2010. My husband was diagnosed at the same time. In researching Interferon treatment, we decided NOT to go through it. Instead, our GP set up blood tests to monitor our liver count(s). After a year of checking every month, he changed the schedule to once a year. Changes were very small and of no worry to any of us.
During the summer of 2010, I had an episode where my ankles blew up because I was retaining fluid. A few days later, I experienced extreme cramps in both feet, as well as hands. I managed to get out of bed, hoping that by putting weight on my feet the cramps would subside. My son called the EMTs, who checked me out and decided I had an electrolyte imbalance. They suggested I see my GP in the morning.
When I told my doctor my symptoms and he browsed through my chart, he realized that he'd diagnosed me with asthma, as well as acid reflux. I was sent to have an ultrasound done and 4 hours afterwards, I was told to go for a CT scan the following week. After waiting a few days, we decided to check w/the lab and were told scan results had been sent to my doctor. We decided to 'walk in' and he told me I had cancer and was referring me to an oncologist. The oncologist prescribed monthly shots of sandostatin and the cancer as stopped growing! I have changed my diet and drink lots of water. Elimination of sugar has helped, also. I take furosemide for the fluid retention twice a day and losartan for my blood pressure. I also am taking B12, Magnesium, Zinc, Milk Thistle, Calcium and a daily vitamin. It is now 19 months since I started the sandostatin injections and my CT scans show 'no new growth.' I now have hemolytic anemia - red cells not produced fast enough compared to usage - and my energy levels are much lower. I can not work a 40 hour work week and the worst thing about my condition is that my stomach gets upset easily and for that, I am taking Pancrilipase. I do try to exercise by either swimming a few laps or walking around our block but I am usually too tired to go very far from home.

When initially diagnosed, we found a list of 14 symptoms of which I already am experiencing 12. Following my first CT and MRI, etc. doctors would ask me to stay a bit after the test was done and each usually asked, "How did you get diagnosed so early?" I think that the swelling ankles and the cramps helped but I also recall that while I was working (office job), I'd sometimes stand up from my chair and the muscle behind my belly button would flex. As it turns out, that was my pancreas trying to let me know it was having problems. My oncologist told me that with treatment, I could live another 20 to 30 years, depending on how long I've had this cancer. I believe the dropping off point was sometime in 2005. In a way, I am fortunate to have HCV because without the ultrasound of my liver, no one would have known about the growth in it that started from my pancreas!

jb333
Posts: 2
Joined: Jul 2012

My husband was diagnosed about 3 months ago. He's 34 years old. Ultrasound showed lesions on his liver. One test led to another and eventually biopsy results yielded diagnosis of metastic neuroendocrine tumor that originated in pancreas. His onocologist explained it to us as being the type of cancer Steve Jobs had. I guess he figured that would help put it in context. He is currently undergoing therasphere procedure to address the tumors in his liver. He will have an MRI in a couple of weeks to see if it has spread to his spine since he has severe back pain.

Suzi_cue1961
Posts: 17
Joined: Jul 2012

Jb
My husband had the sir spheres, which I can only assume its along the same treatment. We were told the same thing that he has the same cancer as Steve Jobs. My husband has gone thru several chemo drugs, targeted drugs, and chemoembolization plus surgery. He was suppose to do three rounds of the embolization but he could not take it. And since the last sir spheres has not lasted as long as they were expecting they have decided to start him on the new drug Sutent. He just started yesterday, so now we wait.
My husband is 52 years old. He was 48 when he was diagnosed. My husbands was the same as yours. Not sure if you can read my story about his journey. But I think if you click my screen name it will bring up his journey. I definitely know what y'all are going thru and my prayers are with you. This is the first time I have ever gotten on this forum.
After surgery we did find out that it did spread to his spleen. As of 6 months ago the one in the pancreas that was removed has not returned but the lesions on the liver are so many that as of yet nothing is stopping them. We are from Louisiana.

Did your husband have an Octreoscan? This was the only scan that found his primary when we first started. Is your husband able to continue to work?
What about his chromogranin A count?
If you have any questions, I would be happy to help if possible.

jb333
Posts: 2
Joined: Jul 2012

Thanks for sharing! I'm sure as we continue this journey, I will have numerous questions for you. Things have moved so quickly that I'm barely able to process them. I stumbled upon this forum last night when I couldn't sleep, so I've never posted anything before either. He has not yet had an Octreoscan. Scans were mentioned at his appointment yesterday. As of now, he is able to continue working but not sure for how long. He feels pretty good some days, but then there are the other days. His chromgranin A count three months ago was 81. I haven't seen a value since then on his other lab reports. We are traveling to Duke for treatments. It's about three hours from where we live. I wish your husband the best, and my prayers are with the both of you.

mr steve
Posts: 286
Joined: Sep 2009

I hope both of you are doing well. It is in deed a roller coster ride. Mine has come to an end. My wife has had the Chemoembolations, surgery, and oral chemo. You need to go to hospitals that have worked with this type of cancer for the best outcomes. We too had a three hour drive for treatments. I wish your husbands the best outcome there can be. Prayers and hugs.

Steve

Suzi_cue1961
Posts: 17
Joined: Jul 2012

We have gone to one of the best in the field in neuroendocrine carcinoid cancer. The top surgeon in this field Dr Boudreaux was his surgeon. The group in New Orleans with Dr Woltering are all top in this field. The surgeon that performed the sir spheres came highly recommended. We have been very fortunate to have had an oncologist to help lead us to where we needed to be. They have all worked endlessly to try and stop this cancer but even though they say it's slow growing, I am not totally convinced. Because it may start slow but those chromogranin numbers go up quick. Along with the Liver counts.

If you don't mind me asking Mr Steve, how old was your wife? Did your wife have good and bad days? This has been the worst for my husband, especially this past year. We thought we had lost him before Christmas but praise God the sir spheres was able to slow it down again. I can see their are not too many out their with this rare type of cancer. That was what we were told also.

mr steve
Posts: 286
Joined: Sep 2009

Yes, it was a rollercoaster. There was no telling one day to the next. nausea was the main thing the urge to go to the bathroom was a problem but we think it was due to the size of the tumor in her pelvis area. Hugs and Prayers

Steve

mr steve
Posts: 286
Joined: Sep 2009

Suzi,

I just sent you a email message. It is about his meds.

Steve

pridgen813
Posts: 1
Joined: Dec 2012

I was diagnosed in 2009. I underwent surgery to remove the body and tail of my pancreas, spleen and gallbladder. I was told that my tumor had ruptured prior to surgery and has spread like vines to other things. They told me after that I also have lesions on my liver. My lymph nodes have remained swollen the same size since surgery and have not changed. Although I am considered "stable" right now, I have just began to have pancreatitis attacks again and a lot of strange allergic reactions.

I have realized since my diagnosis how afraid other doctors are to treat me even for simple things as a flu. I recently was hospitalized for pain in my liver for a couple of days and when the gastro doctor saw me he told me that I was the only person he had ever known with the type of cancer history and he refused to treat me. It can be very frustrating at times to try and get help and answers

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