Sensitive subject: It's hard not knowing "how long"

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RE: Sensitive subject: It's hard not knowing "how long"

by LauriG on Fri May 11, 2012 02:59 PM

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You definitely should not feel ashamed! Regardless of what I may or may not face, that does not make the cancer journey you and your family are on any less difficult. Everyone's experience is unique and you cannot compare losses, because what is important is how it effects you. Your feelings and your grief are important! So be gentler on yourself.

So it seems Dave has a family history of carcinoid, wow. I have two beautiful nieces (3 1/2 and 18mths) who I am obviously concerned about, particularly because their Dad (my brother) has complained for years about the same sort of pain that I had before I was diagnosed. He doesn't have the flushing, but the pain is suspicious, so he is seeing a specialist in a couple of weeks. I also have a sister who is currently being tested. It is such a confusing disease!

Will be praying for Dave (and you!) on the 21st.

Blessings, Lauri.

RE: Sensitive subject: It's hard not knowing "how long"

by Onecat on Fri May 25, 2012 03:28 AM

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Hi, First--very sorry for what you're going through. My husband has carcinoid cancer---we were told he was cancer free after his 1st surgery back in Sept but he wasn't---the bloodwork revealed problems though nothing showed up on any scans so they were prepared to just monitor him. Our support group recommended getting a second opinion from drs in Louisiana and that saved my husband's life . Long story short---do NOT let a doctor tell you to just come back in 6 months for re-check---he needs blood & urine tests and scans on a regular basis to catch things while they're small.Some carcinoids are aggressive, my husband's spread and grew in less than 5 months. My husband needed a second surgery which revealed many small tumors which never showed up on scans---only 2 larger ones in his liver showed) He is now getting chemo, monthly sandostatin shots, and valproic acid which is an anti seizure med that's been found to also fight cancer. He just got checked again & his numbers are all normal. Reality is that things could change so even good news doesn't totally relieve you--I feel that too. If you have the means, you should contact/visit the Carcinoid Clinic in Kenner, Louisiana. Dr. John Cole is the oncologist and Dr. John Boudreaux is one of the few experienced carcinoid cancer surgeons in the country. 504-464-8500. You need to consult carcinoid experts & have them review your case, rather than getting unnecessarily scared or reassured by other people's stories because every patient really is different. Best to you and your husband.

RE: Sensitive subject: It's hard not knowing "how long"

by jimsrose on Sat Jun 02, 2012 08:44 PM

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Your husband was very fortunate.  I totally agree with you regarding seeing a carcinoid specialist. My husbands life was saved also by the doctors in Louisiana.  We should have already went back, but we are in Southern Cal.  We are probably going to make a trip sometime in the very near future to see the specialist in Los Angelos, Ca.    He is much closer, about 5 1/2 hours away. 

 

I also hear what you are saying about getting " good news", it can be shortlived. However it just plain helps when I can hear other peoples stories and input. Thank you Onecat for what you wrote!   I wish you and your husband the very best also.     

 Debbie

 

RE: Sensitive subject: It's hard not knowing "how long"

by jimsrose on Sat Jun 02, 2012 09:13 PM

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Hi Lauri,

I am really sorry I am so long in replying back to you.

Life can be a roller coaster for sure. Someone broke into our house and stole our checkbook, and my purse while we were in bed asleep!  Creepy.  They had a hayday purchessing things with my debit card till we put a stop to it the next day.  It really caused so much hassel and trouble for us!  But thankfully our lives have gotten back to some semblance of normalcy now.

I am sorry you are  having to deal with this disease at such a young age.  And I do believe it can be hereditary.  Jim's Mom also was diagnosed with carcinoid, but not till she was 79 years old.  She died at age 84 from a heart attack, and we are not sure if it was carcinoid related or not.  I think it is good they diagnosed you, better sooner than later, and you sound like you are very on top of things. 

I have heard that some people have lived over thirty years with carcinoid, and I think you have an excellent chance of winding up in that group!   We will pray for you that the primary will be found soon so it can be removed.  Jims was in his small intestine and they were able to get it all out of there.  It is in his liver, but he is managing pretty well inspite of that.  We are grateful to God he does not experience pain, only symptoms from the syndrome.  This last month he did better with the sando shot than ever before, and he just got another one yesterday, so we are hoping this will be a good month too.thank you for responding, and all the info you put.  I am like you, and do alot of reading on the subject.. I want to know as much as I can!

 

Take care, and try as we do, (sometimes we drop the ball) to put it all in the hands of the One who made us, He is able to see us through, and to even use our trials to bring glory to Himself.

Warmly from Debbie

RE: Sensitive subject: It's hard not knowing "how long"

by jarsclay on Tue Jun 19, 2012 01:57 PM

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I lost my Dad to carcinoid cancer this past January. I completely understand wanting to know how long because I was consumed with wanting to know that myself.

I think the answer with this cancer is that no one knows the answer. It's so individual and it depends on so many factors. Having said that, I can tell you what happened with my Dad.

He was diagnosed in August 2010 at the age of 72 after a routine physical exam where his doctor felt that his liver was enlarged. Unfortunately, he was misdiagnosed at the beginning as they thought he had high grade neuroendocrine cancer, which does respond to chemo. So, they started him on a 6 month round of chemo, which did nothing to help him and only made him feel worse. In January 2011, he was able to switch insurance and go to MD Anderson (we live in Houston) and they changed his diagnosis to low to mid grade and told him the chemo was not the correct course. Even though he'd been having SOME Sandostatin shots before then, they ramped up on that treatment once he got to MD Anderson.

His cancer was mostly in his liver - the right side was about 80% covered, although he also had mets in several other places. Of course, the liver was the primary concern as nothing else was big enough to really worry about. As with your husband, he probably had this cancer for many many years without knowing it. Looking back, we saw many of the signs of the cancer, including flushing, heart problems, etc. All of this in the past was attributed to his heart as he'd had a quadruple bypass back when he was 60 years old.

My Dad lived 18 months after he was diagnosed. I think the first 6 months would have been much better had he not had chemo. The last year was a slow steady decline and although I know he wanted to continue living, I know he was also miserable. He had chronic diarrhea during that entire year, increased flushing, increased weakness, skin rashes and at the end, lots of confusion. For him, the Sandostatin didn't do much good - I'm assuming the cancer was just too far advanced and covering too much of his liver.

Like you, we kept thinking all along, how much longer does he have? The most frustrating part for us was that his doctor seemed to not want to talk about it. We had to push and push as it seemed to us it was obvious he was going downhill. She seemed to be in denial. We actually had to request that he be seen by the Support and Palliative Care Department about 3 months or so before he died b/c his quallity of life had really gone downhill and the appointments to see the doctor were very hard on him. The SPC department provided a lot of help in relieving some of his symptoms and in giving emotional support to my Mom. However, even with them, no one seemed to want to discuss how much time he had or where things went from there.

We obviously were the ones to really see what was going on with my Dad and when it was obvious to us that he could no longer tolerate going in for appointments, we requested that they set us up with hospice care even though it felt like giving up. To this day, it's so strange to me that we had to request both the palliative care and the hospice care. My Dad was only in hospice care for about 10 days before he passed away, so obviously he was in a very quick decline at the end and we made the right decision..

At the very end, my Dad became very very weak and very confused. The cancer damaged his heart and I think his liver was probably also giving out. He couldn't remember how to eat, he didn't know who I was on one occassion and simple tasks just eluded him - again, a lot of this had to do with not having enough blood to his brain and his body being flooded with toxins. We ended up with 24 hour nursing care the last 24 hours of his life as my Dad was a fighter and it ended up being too much for us to handle (my Mom, myself and my 2 silbings). He literally fought us to the end.The last week and especially the last several days were very difficult. I said I wanted to know how it was going to end, but I'm not sure I could have tolerated knowing before it happened.

Hospice was the best thing we could have done. My advice through all of this is to take charge of what's happening with your husband as much as you can. The doctors don't see the daily challenges or the daily changes - and there were DAILY changes. Also, oncologists are there to treat the cancer - to try and cure the cancer. In our case, they weren't so great at treating the quality of life. Be proactive and don't hesitate to bring in the people that provide palliative care when you feel it's the right time. It's the best thing you could do for your husband.

I don't know if I've shared too much and I'm not trying to be a downer. But no one would tell us either and even to the end, we had to figure it all out ourselves. The first person that was actually straightforward and honest with us was the hospice nurse about a week before he died. Just to give you an idea of how out of touch I feel his oncologist was - she had an appointment scheduled for him on February 10th and he died on January 24th. If not for us requesting the care that we did, he would have had a much more miserable end.

If you have any questions, please feel free to ask them. I haven't been on here much since he died ... it's only now that I really feel like I can talk about it.

Shelley

RE: Sensitive subject: It's hard not knowing "how long"

by jimsrose on Sun Jun 24, 2012 12:31 AM

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Shelly,  I am so very very sorry to hear about the loss of your Father.  It is very kind of you to share the experience you and your family went through, and also your dear Dad.  I think you are spot on about how oncologists act toward the patient, as a general rule they seem detached from what the patient is going through, and only want to focus on the treatment.  I have frequently seen that blank look come across a doctors face whenever my husband Jim or I have told them about any of his symptoms. The usual answer is no answer at all.

Shelly your father was blessed to have such a loving and supportive family.  I can't help but think of all the people who spend their last days on earth all by themselves without a single soul in their lives who really care,  at the same time I want to tell you how sorry I am that it was so hard for you to watch what your father had to go through.  Sometimes I wonder if it is harder on the ones being left behind then the one who is going through the illness and dying. Although you sound like a very strong person, and are even stronger now because of the hard trial you had to endure.

My faith in Jesus christ sustains me even when I am so unsure of what the future holds.  I'm just so glad Jim and I are together and he is not going through this alone, he was single after a divorce for 8 years and we have only been married for 5 years.    Thank you so much for being willing to share your story. It really did help so much, and touched me at the same time. I will take your good advice to heart about asking for help whenever I come to that road in this uncertain process.

 

Take care, and may God bless you and keep you.

May God and time help you as you

I believe you are also right about each case being individual.

RE: Sensitive subject: It's hard not knowing "how long"

by pineconepeg on Sun Jun 24, 2012 01:29 AM

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My husband is also fighting cancer and I feel like you do. This forum is the perfect place to say what you're thinking because chances are someone is feeling the same.  You are not alone.

I feel like I want to skip ahead to the last chapter and see how it all comes out.  I have faith in God, and I know this is all in His hands, but I don't know what he's planning.  It's the not knowing what tomorrow will bring, the not being able to make plans, that bothers me.  I'm afraid to look forward to a future together and I'm afraid to think of life without him.  One day at a time is all I can do.

I'm a doer and there is nothing to be done.  This all just sucks.

RE: Sensitive subject: It's hard not knowing "how long"

by jimsrose on Sun Jun 24, 2012 06:33 PM

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You said it well, one day at a time is all we can do. In a perfect world there would not be anything like cancer or any other kind of suffering.  It always cheers me up when I hear from someone else going through the same trial as we are who also believes in God.  Frankly I do not know how anyone does this without Him.  It is the blessed hope that lies within us that gives us the strength to carry on.  I know the Bible is true, no one has ever been able to prove otherwise, in fact as time goes on there is more and more evidence pointing to its authenticity, so because of that we can hold fast to its promises about the future... one day there will be no more suffering or pain for those who put their trust and faith in Christ, and there will be a new heaven and new earth, and we will get new and perfect bodies.   Anyway I'm sorry if I have offended anyone, I just wanted share what keeps me going in all of this uncertainty.

It can get pretty tough on the caregivers too, but we have to persevere for our loved ones sake, and yet still take care of ourselves.   God is in control, and we may not understand all the whys now, but one day it will all make sense.   Keep hanging in there,  and trust that all things work together for the good, for those who are the called,  according to His purposes.

RE: Sensitive subject: It's hard not knowing "how long"

by lloyd1 on Sat Jul 21, 2012 05:49 PM

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On May 10, 2012 5:32 PMMarilyn19wrote:

You make me feel ashamed of myself. We (Dave) have already lived a long time, and at 37 years old, here you are facing what could be a struggle within your future.  Our niece finally had to have exploratory surgery before they found a carcinoid tumor somewhere in the intestines... but, they found it! We found out yesterday, Wed. that Dave can have the surgery, and it is set for 5-21.  We are hoping and praying everything will stay like it is, and the doctor will be able to go ahead with it. I hope so much that your carcinoids will show up or just GO AWAY!!

Your information was very helpful to us, but I hope we never have to show it to our doctor..... because it would mean that the surgery was a success :)  I am going to print your answer. Thank you again, and I am 'pulling for you' and your mom!

I don't know if you are aware of Sunny Carney and her ongoing fight with carcinoidcancer.Ifnot you need to read her blog sunnycarneycarcinoid.Shehas been an inspiration to all of us dealing with this mysterious disease!

She also has written a book called "The sunny side of cancer"

I am a widow of a carcinoid patient.I think every case is so diferent it is hard to know what to expect on an individualbasis.Ifyou have specific questions feel free to ask.

Judy H.

RE: Sensitive subject: It's hard not knowing "how long"

by LydiaK on Mon Jul 23, 2012 06:48 AM

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I have Carcinoid Cancer of the Abdomen and have hac suregery. My odds right after the sugery with stage 4 cancer were one year at the most. The cancer has not changed as yet so my odds have gone up. THe side effects of this cancer are hard to live with. I don't know that there are a lot of doctors out there that have treated this kind of cancer with nothing else but a wait and see type of thing. I am still looking,,I have never been in the position of watching someone dye of cancer, close person anyway, so I can imagine what my family must be feeling. I have found on the internet people that have had it for the longest was 23 years . They just do not know much about it..I have Kaiser and they have no treatment for this type. I cannot imagine what you are feeling, but  since you mentioned the Lord, I know or feel that he makes no mistakes and that what happens in our lives it meant to happen the way that it doesn.Don 't understand it at all, but guess that it is not meant for us to ask. I will on this site now looking for answers as well, if you need someone to talk to , I am here,,

 Lydia

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