Just need a word of encouragement.

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Just need a word of encouragement.

by EMILY79 on Sun May 17, 2009 12:00 AM

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my mum has been diagnosed with stage four cancer (five weeks ago)i only know the stage as i have researched it.  we originally thought it was lung cancer but it has been confirmed as being stamoch cancer. she has told us that but she has never confirmed that she knows what stage. i understand this and i respect that she does not wish to discuss it further. i have a sister with three kids and my dad and none of us really know what is happening, we have asked to speak to a dr but she does not want us to do that. i know as i said that it is stage four as it has spread to her lungs and i know that she will never be cured and we also know that the chemo - EFC - has got a 1 in 3 chance of working and that if that doesn't work there is no other option but 'tablets' which again i have researched and found that the 'tablets' will help with her pain etc, i have also read that if a patient as described above goes untreated that she would have around 3 months and that if she responds well to chemo we're looking at 1 to 2 years.  my problem is that all this is just what i have read and i dont know what to do! my family are desperate to know what "getting back to normal" is and what our boundaries are we dont have any clarification as to whether my mum will be able to walk unassissted as her lungs are so damaged or what.  when she was at home she would not come down stairs as she couldn't get back up them for the loo.  has any one got any words that might help me sort things out in my head? i'm 29 and live 100 miles away from my mum and family and i want to be able to plan how i can support my family through this.

RE: Just need a word of encouragement.

by livingbyfaith on Sun May 17, 2009 12:00 AM

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On 5/17/2009 EMILY79 wrote:

my mum has been diagnosed with stage four cancer (five weeks ago)i only know the stage as i have researched it.  we originally thought it was lung cancer but it has been confirmed as being stamoch cancer. she has told us that but she has never confirmed that she knows what stage. i understand this and i respect that she does not wish to discuss it further. i have a sister with three kids and my dad and none of us really know what is happening, we have asked to speak to a dr but she does not want us to do that. i know as i said that it is stage four as it has spread to her lungs and i know that she will never be cured and we also know that the chemo - EFC - has got a 1 in 3 chance of working and that if that doesn't work there is no other option but 'tablets' which again i have researched and found that the 'tablets' will help with her pain etc, i have also read that if a patient as described above goes untreated that she would have around 3 months and that if she responds well to chemo we're looking at 1 to 2 years.  my problem is that all this is just what i have read and i dont know what to do! my family are desperate to know what "getting back to normal" is and what our boundaries are we dont have any clarification as to whether my mum will be able to walk unassissted as her lungs are so damaged or what.  when she was at home she would not come down stairs as she couldn't get back up them for the loo.  has any one got any words that might help me sort things out in my head? i'm 29 and live 100 miles away from my mum and family and i want to be able to plan how i can support my family through this.

Try to look for success stories and positive messages.  I have a friend stage 4 colon cancer now 5 years cancer free.  I suggest the book "Cancer and the Lord's Prayer".  Pray for wisdom.  There is hope. I will be praying for your family.

RE: Just need a word of encouragement.

by shanda39 on Wed May 20, 2009 12:00 AM

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I completely understand my dad was diagnoised with stage 4 stomach cancer in late March. He started aggressive chemo yesterday and if this does not work they suggested hospice. I know how you feel, I live in Md and my family is in Illinois so, I'm not even there and I can't drive to see them its just to far.

 

It's very stressful, and me and my mom speak everyday and we both agree that there is nothing we can do. It is in god's hands all we can do is pray for a miracle that's it. It's such a helpless feeling I know, but all you can do is pray for your mom, speak words of encouragement to her. We never talk down to my dad about it. We really don't know if he understands how serious his condition is. I don't know, prayer that's all I can suggest. Honestly, my mom said my dad is starting to look like a cancer patient his cancer has spread to his liver and my mom said it is now showing. I was just there two weeks ago and he looked ok. I will pray for you and your family because this is the worst thing my family and I have ever been thorugh.

 

Shanda  

RE: Just need a word of encouragement.

by EMILY79 on Thu May 21, 2009 12:00 AM

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Hi shandra, It was me that was asking what chemo your dad was to start.  Mum got hers on manday as planned and so far so good not great side effects. Did you find out what type your dad is getting? I thank you for your support and understand how you are feeling with being so far away, i am able to get home as often as i can but i am away for periods and i too feel like there is nothing i can do to help.I will be thinking of you while this time of trepidation continues. I hope that both your dad and my mum respond well to the chemo as by all accounts if it does work they will both be feeling much brighter and able to get on with what time they have left in reasonable comfort.Everyone that i have spoken to says that you ahve to stay focused on the positive as there will no doubt be plent of time for feeling down later. I send you and your family my love. Take care of yourself shandra and i'll catch up with you soon. Emily  

RE: Just need a word of encouragement.

by momwithkids on Sat May 23, 2009 12:00 AM

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On 5/21/2009 EMILY79 wrote:

Hi shandra, It was me that was asking what chemo your dad was to start.  Mum got hers on manday as planned and so far so good not great side effects. Did you find out what type your dad is getting? I thank you for your support and understand how you are feeling with being so far away, i am able to get home as often as i can but i am away for periods and i too feel like there is nothing i can do to help.I will be thinking of you while this time of trepidation continues. I hope that both your dad and my mum respond well to the chemo as by all accounts if it does work they will both be feeling much brighter and able to get on with what time they have left in reasonable comfort.Everyone that i have spoken to says that you ahve to stay focused on the positive as there will no doubt be plent of time for feeling down later. I send you and your family my love. Take care of yourself shandra and i'll catch up with you soon. Emily  

 

Emily:

My wife was diagnosed with stage IV stomach cancer in March of 07, she was treated with ECF as identified below.  She is in remission and has remained in remission to this day.  Hers was different in that it had spread to her liver and not her lungs; my understanding is that the lungs are a bit harder to treat but please review below.  She remains on oral chemo therapy today and has not had her stomach removed. 

Good luck and never hesitate to ask questions and seek alternate opinions. 

LISA

My 43 year old spouse was diagnosed with Stage IV in March of 07.  She initially presented with acute pain at her GI Junction that was relieved with over the counter prilosec and diet modification; however, we were not satisfied that the pain was simply caused by reflux and demanded an endoscopy which identified the stomach cancer.  The news got worse as further scans revealed a single tumor in her liver; they were 3cm and 4cm respectively. Wow, moving from Stage I to Stage IV sure did not take long.

She immediately started on ECF (Epirubicin, Cisplatin, and 5FU) and after four rounds (each three weeks long) the tumors were no longer detectable on scans and she was classified as being in remission.  After many second (and third and fourth) opinions it was decided not to do surgery in her case and she continued on ECF for another two months.  She experienced nausea with these treatment but a drug called Emend worked really well to decrease the symptoms. 

Post her initial round of treatments the scans were still clear and we changed her chemo regimen to Oxaliplatin and Xeloda (initially 5,000mg/day but quickly reduced to 4,000mg/day); she continued on this regimen for another 4 months before switching to just 5FU delivered every two week through her port (she was on this for the next 4 months). 

After more than a year of chemo, our oncologist suggested a break and to 'see what happens,' however our second and third opinions disagreed and she started again on Xeloda (also known as capecitabine) which she takes orally.  Unfortunately about 8 months into her treatments she developed a blood clot on her pancreas and had to start on coumadin - this was not a problem until we switched back to Xeloda which cannot be combined with coumadin so now we inject her daily with a lovenox type drug (this drug cost a pretty penny).

So here we are a year and a half post diagnosis and she remains on chemo with the advice of multiple oncologists (from Dana Farber, Sloan Kettering, Yale New Haven, and Columbia) all suggesting that she basically stay on a chemo treatment for as long as her body can tolerate it.

Through it all she has completed her Master's in early childhood education, received her teachers certificate and started back to work fulltime.  She remains in good health, has lost no weight and is motivated to continue the battle.  Initially she did have some nausea but a drug called emend took care of that, lost her hair (and has now grown it back and she used a good quality wig which helped her deal with it), lost layers of skin on her feet (this grew back to), lost some sensation in her hands and feet (feeling came back but not to where it was prior to seeking treatment).  As important as anything, her attitude has remained strong with a confidence that she can BEAT IT.  So far she has.  Praying hasn’t hurt her any either. 

That is her story so far.  She is very lucky as we caught it early and have had access to multiple professional opinions from leading cancer centers.  Also, that my mother in law (her mom) is an organizational wiz and we all have color coded binders with every test, every scan, every physician note, and every step of her treatment – this is a MUST HAVE to keep track of it all and be able to present the entire case study to physicians for their opinions (they will only be as good as the information they have to review). There are other success stories on this site.  We continue to take it a day at a time.  Since August of 07 we have had no signs of the cancer returning and sincerely hope it never does.

I hope this information helps. 

Mar 07                          Apr 07                          Aug 07                        

Diagnosed                     Starts ECF                    Scans Clear                 

Stage IV                       Chemo                          Remains on ECF          

Oct 07                          Mar 08                          Aug 08             Nov 08

Changes to                    Switches to                   Back to             Still on Xeloda

Oxaliplatin/Xeloda          Just 5FU                       Xeloda              Scans Clear

 May 08, remains in remission, remains on Xeloda 2,000mg per day!

STEVE (aka momwithkids)

Try to have your mom maintain a positive attitude and may God bless us all.

 

RE: Just need a word of encouragement.

by EMILY79 on Mon May 25, 2009 12:00 AM

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I thank you for a story that it more positive and i wish you all the luck in the future.  I will take on your advice and seek more positive stories though unfortunatly we found out over the weekend that the cancer has spread to her bones.   Neither me or my sister or father have acctually been spoken to by any doctors on my mums wishes so i dont know what this will mean but i will do some research and will keep looking positive. Many thanks, and take care, emily 
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