Please Help

preacherchad said:

Julie;
We, my wife and I
Julie;

We, my wife and I feel your pain. I was diagnosed Nov. 11 with EC. I am 40 years and we have 3 kids. I am not an expert, I am new to this whole cancer thing myself, but you will find very caring, educated individuals here that will lead you in the right direction.

The reason for my reply is due to your statement of feeling overwhelmed and findng it hard to be a parent. I am not sure the age of your kids, but mine are 17, 15 and 13. I will tell you to take it one day at a time, be sure to involove your kids 100% about what is going on and keep nothing from them as hard as this maybe. Our children have shown us more respect during this time because we have been so honest. The most difficult action I have taken emotionaly during this time is sitting down with my children and telling them.

We will be praying for you and your family. Know that you are not in this alone and you will find great people here who have experienced what you are.

chad

GOOD LUCK
Hi Chad

Thank you for the message and thank you for your kindness. Paul and I are SO glad that you have managed to start your treatment and we hope you are doing well?

We have spoken to the children (not so much our youngest son, although he does know the headlines, not just the WORDS and Labels - yet)

It is incredibly difficult as I am going to be VERY honest and say our children are our life, we are actually from the UK (London) and have only lived in the US for 2 1/2 years, we moved here to give our kids a great adventure and all of the benefits of the great outdoor life here, but the last 3 weeks, I in particular feel almost incompetent as a parent. I do not know what to do, what to say as Paul's situation is not straight forward and until we know where we are, we are finding it hard to....just cope.

Thank you and stay well.

Julie and Paul

unknown said:

This comment has been removed by the Moderator

update
Hi Sherri

Sorry if my post was confusing.

I'll start at the beginning but try and keep it brief. Paul had trouble swallowing over the holidays and in January after a visit to our primary care doctor, she referred us to a GI. The GI booked Paul in for en endoscope 2 days later. He said Paul had a small ulcer at the bottom of his stomach and some inflammation in his esophagus. Told us to come back 2-4 weeks later. 5 days later they called to ask us to come in the following day and announced they had found some cancerous cells.

Of course we were in total shock. They referred us to the Mayo Clinic in Jacksonville, which we don't really understand as MD Anderson is so much closer, however we did as we were told at the time.

At the Mayo clinic Paul saw the GI there in the morning and explained we were "lucky" as they managed to get him in for an EUS that afternoon. Stil in shock we had 4 hours to fill until the procedure. The doctor said he was hopeful that from what the GI report and biopsy had said, they thought it was a stage 1 or 2 and briefly went over the treatment.

Once Paul came out of the EUS, quite honestly we couldn't face the wait, not could we think about starting the 3 hour drive knowing we could get a call with news we didnt want to hear, so as crazy as it sounds we went and sat in his waiting room area and just waited. He called us in and delivered the news that Paul's tumor was more advanced than he expected and he was given a diagnosis of T3 N1 as there was obvious signs of cancer in nearby lymph nodes.

They made appointments for the end of February and mid march to see their surgeon, which my immediate reaction was NO WAY can we wait that long. On the way home we called a neighbor who is a Pulmonary Doctor and I went to see him once we got home.

He was great and agreed that not only was the appointments too far away, but knowing we had 4 kids (Charlie 18, Alex 14, Beth 12 and Billy 7) that a 6 hour round trip to Jacksonville was going to be tough, so said he would help us find good, reputable local doctors for the potential Chemo and radiation (as that should be standard) and then discuss surgeons. He helped us find the team we are currently working with at MD Anderson In Orlando.

We have nothing at all against the Mayo Clinic except that in the 3 weeks we have known about Paul's diagnosis, MS Anderson have done so many test, scans and have so far worked with us. Paul did not even have appointments to see the surgeon, the oncologist and radiographer until this friday 18th Feb, so the timing has definitely worked in our favor switching to Orlando as I couldn't bear the thought of everything we have been through having yet to discover. 3 weeks just felt too long to wait for the Mayo Clinic.

Paul's doctors are Luis Herrara - surgeon Daniel Buckholz - radiographer and Dr Maddipattila - oncologist.

I have already put in some all nighters and hours and hours of research and have managed to wade through so many sites, the good, bad and ugly. I found this site and was amazed as I saw some of your and your husbands posts talking about Dr Luketich who I had also found several references to, some info on the hospital and had already emailed him, this gave us some instant hope as reading Williams story and inspirational comments was great.

To my surprise Dr Lukelich replied to my email and after playing ohone tag for a few days we managed to speak with him last week, I sent scans and reports to him by express mail and we are now waiting as I will explain.

Paul is VERY well, minimal weight loss (maybe 4 lbs) feels great and his only symptom up until a few days ago was a little trouble swallowing. The doctors all seemed surprised he could eat a hamburger (for example) with no problem. The first few swallows can be an issue but with water, he is then fine.

The rest of the story goes something like this

1 PET and CT scan - results show spread to Lymph nodes above and concerns for lymph nodes below the celiac junction near the kidneys. Also highlighted 3 bones areas.

This slammed on the brakes for chemo, radiation and surgery

Had MRI for bones - came back clear but still had concerns for lower nodes so they agreed agressive chemo for 2 to 3 cycles and then take another view. It was at this point we managed to speak to Dr Lukelich and he agreed in principle with their decision but made the statement that it would be against the "normal"pattern for the cancer to have spread anywhere without effecting the liver, he said it was possible and would make Paul "interesting" but lets see.

next was MRI and another CT - results showed the bones were clear but concerns over the liver.

We asked to test the liver (this was monday when I made the initial post) Paul had MRI Tuesday of the abdomen, came back clear, but the concern for the lower lymph nodes were still the issue!!!!

Paul was due to start the aggressive chemo this Friday and give the doctors their due, they have accommodated our requests and worked with us, so we agreed that we should try an EUS, with the hope of taking biopsies of the lower nodes once and for all to find out what we were dealing with. So far we have eliminated the bones, the lungs so felt we were on a roll and there was even a tentative discussion around IF the lymph nodes were NOT cancer then we would be back on track for Chemo, Radiation and more importantly surgery.

Paul had the procedure today and it does not look good for the nodes, Dr Herrara fed back that we must wait for the results of the biopsy (hopefully back by Friday) but it did not look good.

If the nodes are confirmed as cancerous, then Paul will be stage 4.

There has been lots of conflicting info and opinions and I have managed to keep this moving by being persistant and pushing at every stage (of course with Paul) to get the tests to rule out/confirm their concerns. All of the doctors have said Paul is a tricky case as he is so young, so healthy and so fit, so they are saying they are not ruling anything out.

They now, even before the biopsy is back are suggesting the intensive chemo again (I guess a negative result would absolutely change things again, but we are not hopeful to be honest).

So, have we achieved anything, I guess so as least by Friday we will know exactly where Paul is NOW and then the next round of decisions will be made after chemo and another round of testing.

They have been honest and said there are literally only a handfull of cases simular to Paul's where they have agreed to surgery, so at the moment the best we can hope and pray for is a GREAT response to Chemo.

I am planning on getting ALL of the report and ALL of the scans and sending the whole package to Dr Lukelich for review again early next week.

Would we go to Pittsburg - YES...we will go to the moon.

I hope I have explained everything well enough and Thank you for your interest. Anything that you and your husband, or indeed anyone else can help with...or direct us, will be MORE than gratefully received.

Julie

jpturn4 said:

Latest
Hi everyone

Thank you so much for your kindness.

Sherri, we live in Gotha, which even people who live a few miles away have not heard of. We are on the boarders of Windermere, Ocoee and Winter Garden, Paul said we are an hour away from you.

We remain very frustrated, I am due to speak to J Luketich again tomorrow and hope he will have some enlightenment on where we are. Paul's doctors just keep contradicting themselves, i politely told them last week they needed to get their stories straight BEFORE speaking to us. They are all VERY nice, but are just not filling us with confidence. Herrara just ummm's and ahh's really and says "we will see how things are after chemo", we know we have to wait until then, but give us some hope!!!!!!!....Luketich emailed and made 4 strong suggestions, 2 of which are gut wrenching as do not involve surgery but at least he is straight talking and laying out the options clearly. We are also considering going to see another doctor that has been recommended locally Boyer, be fantastic of anyone has any feedback on him???

On friday they gave us the following feedback;

3-6 confirmed nodes below the celiac and one of those nodes is near the pancreas and also nr the liver, they said the spread was "moderate". The they told me that Paul was now a T3N3M0 but keep saying the nodes are a serious complication and they will see how things are after Chemo. This conflicts what I have read on various (many) sites.

Paul needs to start chemo asap as it is now almost 4 weeks since his diagnosis and things are changing fast. He is now having more trouble than ever swallowing, not a huge problem yet, but getting that way. He is having more trouble with stomach and back pain, I guess this is because his stomach is having to work harder to digest his food, so we have switched to a very plain simple diet...thank goodness for poached eggs! He has not lost any weight, but is finding it hard to gain weight in preparation for starting chemo, which was our plan.

His head is not in a very good place at the moment and whilst he is a proud man, he is absolutely terrified that all of this testing has allowed the cancer to spread, despite their constant reassurances that it will not. I think their hesitance of a treatment plan is just unnerving as we feel/see their doubt and...well I know you know. We pushed for some of the testing as without doing so, they were virtually saying surgery would NOT be an option, but we're not sure we are in a better place now the testing has been done.

As it stands Paul starts Chemo on wednesday, has everyone with EC taken the dex-steroid? I was surprised as one of the main side affects is irritation to the esophagus, my niece took this drug through her leukemia and her side affects were awful.

Thank you again for taking the time to reply.

I'll be back on with more questions no doubt soon.

Julie

Blunt question
Hi

Am sorry to ask this, but does ANYONE know of any survivors of a T3N2 or3 survivor?

Also, any tips for food/pain would be greatly appreciated?

Julie

ArchTB said:

Of course there is hope!
Julie,

I am sorry to hear about your husband's diagnosis. But I also want to assure you that there is hope! There is always hope, no matter what! Your husband is quite young and I hope he has no other health complications. My husband is 37 and he has Stage 3 EC (T3 N1 M0). He has had 4 rounds of Chemo (cisplatin and irinotecan), and so far has a very good response to the treatment. In fact, the PET scan has not detected any malignant activity in the nodes anymore, and his tumor has reduced in size quite a bit.

Of course the diagnosis always comes as a shock. But it is important to get yourself together, start thinking positively and proactively. Stay strong, hope for the better, and push forward.

Olya

Thank you
Hi

Thank you BOTH so much for your reply, just hearing about your stories has cheered me up no end. Paul has confirmed nodes below the celiac, but we're hopeful because he is young and so fit, that he'll have a great response to Chemo which starts tomorrow!

Paul is actually doing beter than me with his attitude, but then i took on the doctors, the research and the shock on top of everything else, but we are staying positive and have all our hopes and prayers invested in his 4 cycles of chemo!

I wish both of your husbands the absolute best and will keep you all in our prayers.

Julie