I Need Hope

My 41 year old son is battling Stage IV stomach cancer and was dx March 2008.  He was given about a 10% chance of survival.   He was initially treated with 90 days of continuous ECF chemo regimen which was very difficult and had many side effects for him.  He lost 53 lbs.  He was bed-ridden that entire time.  After a 3 week period to regain some strength, he underwent radical surgery in July.  They removed his entire stomach, 5 inches of his esophogus, part of the small intestine and over 25 lymph nodes.  For just 2 weeks after surgery, he felt fairly well and went home from the hospital with hope.  Yet two weeks later his exact same excruciating pain returned in his abdomen, back and groin.   He has been hospitalized off and on since then, undergone extensive tests and a spinal ablation.  There is nothing they have been able to do for this pain except Morphine.  He is home now but so medicated that he cannot function, and is very depressed and discouraged.  He wonders if all this was worth it as he tries everything to live for his two small children.   The doctors are NOT indicating this is "it" and yet there is no quality of life for him.  However, they have postponed indefinitely the planned additional 90 days of chemo of 6 weeks of radiation they had planned to do after his surgery.  He is just too weak and they don't feel his body could take it.  It's hard for him, and those of us who love him, to stay strong.  Are there any folks out there who have experienced this who can offer some hope?

I wish I could give you answers that will make you happy, and give you hope but as someone who has gone through this with their father, I know it all too well. I cannot imagine the pain you are feeling in your heart as your child suffers. But, you have come to the right place. My personal opinion is that your doctors are not being up front with you, or basically just expect you to know whats going on. My fathers doctors never told us that this was "it", it really just happened. The refused to give him more treatment, and told us there was nothing else they could do. He passed 3 weeks later.

The morphine to me, is a sign that now the doctors just want him to be comfortable. Is your son eating, or is he just so doped up from the meds, he basically sleeps all day? Have you thought of in home hospice care to help out? This has to be so very stressful for you, especially when there are little ones involved. Try not to take it all on yourself, you need some help, and a break every once in a while.

 

Many Hugs.

You should always have HOPE. I have been stage IV cervical cancer for 3 years and just keep going and going. Have bad days, and good days. What keeps me going is my 3 young kids. I know that will help him out having small children. Everyone is different, and if he is strong hopefully he will begin getting his strength back and get on chemo. Hospice can be short term too, just enough to get him going again.

Hang in there and keep praying amd HOPING!

I would encourage you to ask the doctors if they are just giving morphine to keep him comfortable or if they foresee a time in the future that he can resume chemo. Try posting on the esophageal cancer board and ask for suggestions (a little more active than this one). I wouldn't bring in hospice until the doctor tells you there is nothing more that they can do. I hear a lot of cancer patients recommend vitamin B12 for energy and my brother-in-law benefits from transfusions when he is too weak. Finally, I would ask if they can try the chemo with some of the other experimental drugs. Some patients who have not been successful with standard chemo regimens benefit when they add either Avastin or Erbitux. Don't give up, don't lose hope and persuade your son that lots of survivors on this website experienced some very dark periods before they became survivors. I will keep you and your son and his family in my prayers.     

 

On 9/5/2008 Kristennyc wrote:

I wish I could give you answers that will make you happy, and give you hope but as someone who has gone through this with their father, I know it all too well. I cannot imagine the pain you are feeling in your heart as your child suffers. But, you have come to the right place. My personal opinion is that your doctors are not being up front with you, or basically just expect you to know whats going on. My fathers doctors never told us that this was "it", it really just happened. The refused to give him more treatment, and told us there was nothing else they could do. He passed 3 weeks later.

The morphine to me, is a sign that now the doctors just want him to be comfortable. Is your son eating, or is he just so doped up from the meds, he basically sleeps all day? Have you thought of in home hospice care to help out? This has to be so very stressful for you, especially when there are little ones involved. Try not to take it all on yourself, you need some help, and a break every once in a while.

 

Many Hugs.

 

Thank you so much for taking time to respond.  It means so much to hear from people who have gone through this.  I am so very sorry for your loss and know how much it hurts.   The morphine does keep in a what he calls a stupor, and he sleeps fitfully about16 hours a day or so.  On good days when the pain doesn't break through as quickly, he can get up for an hour or so and does try to eat.   He is on a feeding tube which provides his nutrition, but he tries to eat small amounts of food as well.   He is not on a morphine pump, but takes it orally.  I have the very uneasy feeling that you may be correct in that the doctors are not being totally upfront about his situation.   They have told him that the pain will be with him "forever" and that the  morphine will be best to help allieve that.  However, he is not pain free and comfortable.    I hadn't thought about in home hospise.....didn't know they had such a thing.  That may be a godsend, and I'll check it out.  Thank you again so much for your help and God Bless you and your family.

I know what you and your son are going through, my mother is also suffering from the same disease (I posted a message two posts down). 

I have been trying to get my mother to try all sorts of therapies because she has been denied chemo and would like to share one with you, just in case you have interest.  I took my mother last week to see a doctor that prescribes a regimen of heavy doses of different kinds of vitamins to treat cancer.  Over the the last thirty years he claims to have treated 1,500 patients, mostly terminal and has had a success rate of 40 percent, according to him.  I don't know what to believe but with nothing left to lose except life itself we are trying his protocol.  Vitamins prescribed include C, Naican, D, and selenium as well as a probiotic but that is because my mother has a severe c difficile bacteria problem.  If you have interest, I can give you the protocol prescribed her and your son can try it.

Your son may not be able to resume chemo and radiation right now, but that doesn't mean there isn't other effective treatment available for him.  He's lost a lot of weight - that means he needs super nutrition.  He's already had a stiff round of chemo that has debilitated him - that means he needs to shore up his immune system.  He's had extensive surgery - that means he needs all the nutritional help he can get for healing.  He also needs nutrients that will work to build up his mental and emotional status and overall sense of well-being.

I recommend two things.  Find him a certified or licensed naturopathic, homeopathic,  or holistic practitioner to prescribe a power-packed diet and supplemental regimen to start doing for him these things he needs.  Every little bite he eats and every sip he drinks has to deliver the very maximum of nutrition he can get. And he needs to start getting them as soon as possible.

Vigorously Investigate alternative therapies.  If your son  starts gets his energy back, regains some weight, builds some strength and stamina, he may very well be able to get that additional chemo and radiation.  In the meantime, there is no reason that getting him the  nutrition he needs can't also be used to fight the cancer.  The very best site I know of for alternative therapies is http://www.cancertutor.com.  The webmaster is Webster Kehr. He is a man of  knowledge and integrity greatly concerned with providing treatment help to those who most desperately need it.  He can be contacted:  cancertutor@yahoo.com   Take a look at his site, and if you are interested in learning specifics as to how natural therapy can be used to start helping your son now, write to Webster, tell him what you told us, and ask him what he recommends to best help your son.

You may receive replies from other members on the board regarding natural alternatives they have used when they were very ill with cancer. There are members who can also recommend drs and clinics who deal with alternative therapies in conjunction with conventional treatment.  Certainly check out the things they tell you, but do not delay overly long in making decisions.  Please start  some kind of natural regimen as soon as possible.

Thank you so very much.  Everything you said is right on the money about my son and his situation.  I will definitely check out this information and site.   It sounds as though you have first hand knowledge of this awful disease, and if so, you have already given me great hope.  I so appreciate you taking time to share this with me.  As I said, it gives me hope as well as good information to pursue.  God Bless!

I used to be a nurse many years ago and I have a lot of experience with cancer from that and also from my personal life.  I try to use that experience and knowledge, plus my ability to quickly grasp information from research, to good advantage.  Unfortunately, I am not very well versed with current treatment of MM - it seems much has changed in that regard since the 1990's. I've read up a little about recent advances, but not enough to offer you more specifics without first reading up a whole lot more.  I sincerely wish I could offer to do the research and try to find better answers for you, but would be unfair on my part to make that kind of commitment and then not be able to carry through. 

I have read enough to know that hope with MM has good reason to be more plentiful than when my mom battled this disease! Please see this message thread: 

http://www.cancercompass.com/message-board/message/all,27668   

My message is the 3rd one down - there are many other messages in the thread that speak of hope also. There is more on Cancer Compass that might contain answers for you - I have not yet sufficiently mastered the search engine to help weed out the stuff that speaks well to complementary and alternative medicine as regards MM.  The best I can tell you is to talk to Webster Kehr, check out his website, and in the meantime if you have time and energy, keep looking through past messages on MM and other types of bloodborne cancer.

Sincerely,

Tre

 

On 9/7/2008 Johngentles wrote:

I know what you and your son are going through, my mother is also suffering from the same disease (I posted a message two posts down). 

I have been trying to get my mother to try all sorts of therapies because she has been denied chemo and would like to share one with you, just in case you have interest.  I took my mother last week to see a doctor that prescribes a regimen of heavy doses of different kinds of vitamins to treat cancer.  Over the the last thirty years he claims to have treated 1,500 patients, mostly terminal and has had a success rate of 40 percent, according to him.  I don't know what to believe but with nothing left to lose except life itself we are trying his protocol.  Vitamins prescribed include C, Naican, D, and selenium as well as a probiotic but that is because my mother has a severe c difficile bacteria problem.  If you have interest, I can give you the protocol prescribed her and your son can try it.

Hi there, I would love to hear more about the vitamins and which dr this was, as my dad is terminal with stomach and liver cancer. He doesnt eat that is the only problem, is tube fed through the stomach and has lost 30kgs in 12weeks, I am hoping and still pray for a miracle, if I can get him to take some vitamins, we can only try and hope for the best, please contact me asap and let me know.

 I eargerly await your reply :)