Great news Lainy. You have every right to celebrate by dancing till the cows come home. You are such an inspiration to all of us on here and I couldn't be happier that you are cancer free. Here's to another 5.
Melinda A

2

(6 replies, posted in Introductions!)

Hi Michelle, Welcome to the site. You will find that the folks on here are incredibly supportive and have a wealth of information from their own experiences or from the experiences of a loved one. As Lainy said, do not get caught up in the stage that you have been given. Every one is different and you should not place yourself into any statistic based on that.
My advice to you is to research on this site and other reputable sites on the web. Keep as positive an attitude as you can...it's hugely important. Keep busy. Allow people to help you and pray for you if that is your belief. Be good to yourself. Some days will be easier than others. Don't get down on yourself if you don't feel like eating or doing much of anything. It's your life...
God Bless you Michelle. Please keep us posted.
Melinda A.

Serena, I don't think you insulted your doctors at all when talking about getting a second opinion. I think that is such a standard practice these days that doctors probably expect it. We did not opt for a second opinion because when we found out how many physicians were discussing John's case, and came to consensus that surgery was the course of action, we felt this was as if we had 46 second opinions. I think if you were to ask Dr. Selby if they have a Chinese speaking oncologist at USC, he could point you in the right direction. I know that there are some at COH, but am not sure about our specific doc. Most hospitals are so willing to go the extra mile for patients and their families...ask about family services, translation services (not over the phone) and how they can best meet your needs. I'm sure that there are many volunteers that you could get to know, some many speak Chinese. We have been at COH since April and are so impressed at how they do everything imaginable to help you in your difficult journey. Ask about it at USC, and about their tumor board. They have a wonderful program. I am sure that this will bring your mom more peace.
Melinda

Serena, I am not sure if Dr. Chung at City of Hope speaks Chinese or Mandarin. I'm sure that you could find out. My question to you is why you would have an outside oncologist (one from COH) when you are thrilled with your surgeon at USC? I heard great things about Dr. Selby as well and I know that they have wonderful oncologists on board.
At City of Hope, and probably at most cancer research hospitals, each patient's case is brought before a tumor board consisting, in part, of surgeons, oncologists, radiologists, etc. Each week, they discuss the best course of action amongst the 46 doctors on the board and that is the course of treatment that is followed. City of Hope was very fortunate to have Dr. Yuman Fong, from Sloan Kettering in NY, come to Duarte to be Chair of Surgery. He is internationally renowned and advised on my husband's case which is being handled by surgeon, Dr. Singh, who also is wonderful.
Since Dr. Selby is also held in high regard, and USC also brings cases before their tumor board, would you not want part of his team to be treating your mom, instead of splitting two facilities? I am new to all this and not sure what the benefit would be other than proximity of the hospital and comfort level with a oncologist who may speak your mom's primary language. I just know that I find great peace of mind knowing that if there is a question, our oncologist can pick up the phone or run downstairs to ask his colleagues what their thoughts are.

5

(14 replies, posted in General Discussion)

Hercules, you are such an inspiration and your advise is not falling on deaf ears. My husband is almost done with chemo, after a successful resection. My first thought was that of fear, knowing that the chemo safety net was being removed. You are so right...don't wait around wondering if the cancer will come back. I will look into taking those trips that we never made, visiting the kids, traveling to the ends of the world and back. Bless you for your work with people with cc. Congratulations on your 9 years. You should indeed be shouting from the mountain tops.
God Bless,
Melinda A

6

(5 replies, posted in General Discussion)

Hi Porter, my husband had a CT scan three months after resection and scan showed both a shadow and a spot. Oncologist said he'd be surprised if they were cancerous since John was on gem/cis. Saw the surgeon and he said that the shadow was fluid from the surgery and the spot was scar tissue from where he had removed a spot on his liver. The good advice we received from the Onc, was not to worry about it intil we saw the surgeon. He was in there and had detailed notes on what he saw during surgery....when he saw the CT scan, he knew exactly where it was and that it was scar tissue. I had myself all worked up for nothing.
Melinda A

Serena, Yes we are at City of Hope. Our surgeon was Dr. Gagandeep Singh and our oncologist is Dr. Chung. We love the hospital and the aggressive treatment that they provide while still being hopeful and individual. Found out yesterday that we will be done with chemo on November 5th instead of the 25 as we originally thought. It's been six months and my husband was starting to get pretty discouraged. This small change in end dates was enough to encourage him that the end of the side effects are hopefully nearby. CT scan in November and that will become our new baseline. So thankful that we only have three more infusions left.
Best of luck,
Melinda

thanks so much Gavin. I will indeed check out your links. Your vast knowledge and help, along with the other members,  bring such peace to all of us.
Melinda A

Mary Beth, Nothing really to add except that I am continuing to pray for Rob, you and the family. It is so difficult as a wife and caregiver to see her husband suffering or not at top speed. Being positive is so very important and your biggest job now, I imagine as it is for me. Rob and my husband John have similar backgrounds in that both had tumors discovered incidentally and had a successful resection shortly thereafter. Hoping and praying that the chemo knocks this thing on its behind.
Just wanted to send you my positive energy and thoughts.
Melinda A

I'm so sorry to hear about your sisters diagnosis. It was very scary to hear it as well. You have come to the right place. There are many threads on this site that can tell you about hospitals and procedures from many parts of the world. Make sure that you find a hospital that has extensive experience treating cc. I'm sure that Gavin will jump in as he is in your general vicinity. We are in So. California and are being treated by Dr. Singh at City of Hope. Dr. Fong, from Sloan Kettering just took over here as Chief of Surgery. He has a very good reputation as well.
The diagnosis is overwhelming, but read through many of the threads and do searches to find specific information. Others will join in to help as well.
Just keep looking and keep fighting.
God Bless your family.
Melinda A

Serena, Just saw that you are from Walnut. Did your mom  get treatment at City of Hope?

Love how we refer to each other as Melinda A and B. I have a niece named Melinda too and we call her Melinda B! Didn't know that there were that many of us around.
Thanks for your input. John has decided to stay the course and complete chemo. Hoping that his fog doesn't get too much worse by Thanksgiving and hope that whatever comes after chemo will be something that he can handle emotionally. You guys are right, what's the alternative? I've decided that we will just do a lot of day trips to keep his mind occupied and off of the side effects. Hopefully the 100 degree temperatures in So Cal will subside in a few weeks and we can get out and about a bit more.
Be well,
Melinda A

Hi Serena, glad to hear that your mom was a candidate for resection and that they got clear margins. This was the case for my husband as well who had his surgery in May. He decided to go ahead with the chemo for 6 months. He receives two drugs referred to as gem/cis. I'm not going to lie, FOR HIM, the chemo has been tough just recently...particularly with no appetite and chemo brain/fogginess. Last week, after 4 months, he was thinking of stopping the chemo, but decided that he has gone this far, he can handle the last 6 infusions. People on here will tell you that everyone responds differently and that is absolutely true. Some people have little or minor side effects. They will also say that there are no wrong decisions, it is very personal. That is also true. Only your mom and you can/should make the decision to go with the adjuvant chemo. That being said, there are meds for nausea and appetite. Marinol also helped him some.
Good luck with the decision. I know it is a difficult one. I didn't give you much additional info, other than what we decided and what we are dealing with. Whatever choice you make will be the right one for you. We decided to made a decision and not look back.
Best of luck to you both.
Melinda

Thanks Cathy, Julie and Duke...you're right about the roller coaster effect, perfectionists getting hit hard, and the ever present opportunity to attend the day's pity party. The caregivers get invited to these parties too I think. John does take appetite and nausea meds but Megace was not an option since he is on blood thinners. He started a new anti-depressant and I have seen some encouraging changes. Just gotta keep moving forward and as you said before, Julie, the alternative is far worse than a lapse of a word or concept.
Thanks all for taking the time to encourage and share your stories. Sometimes, it just gets a bit overwhelming. We'll get to Thanksgiving and we will be celebrating his last dose of gem/cis, I'm sure.
Be well,
Melinda A

Iowagirl, I had read some of your earlier posts when I was searching for a similar story as my husband's. Your response is exactly what I was looking for. I guess I was using the terms "chemo brain" and "fogginess" interchangeably and you do make the distinction. I think what my hubby finds most disconcerting is the fogginess, sad feelings, overwhelming emotions at times. Of course, word retrieval is problematic and worrisome to him, but not the same as the whole foggy feeling. If he sticks with the chemo, and has a similar recovery as you, then hopefully around Christmas he would feel like donning the red suit once again.
Thank you so much for your response. I know it is "your story" and not indicative of all chemo patients, but helpful to hear it.
So happy to hear that you are getting back to your normal perky self.  Best wished for additional recovery and beating the CC beast.
Melinda

Hello all, Once again, I am looking to your vast knowledge and asking, if in your experience, does the chemo brain subside after gem/cis is completed? I know that everyone responds differently, but looking for generalizations that I can use to help my husband who is four months into chemo and is thinking of stopping it because of his fogginess. His appetite, like everyone else is shot. He takes Zophran (sp) and Marinol with little success and he is just getting so discouraged. He has always been so sharp, being a principal at a school for severely retarded students for 37 years, multi-tasking and caring for those entrusted to him...but now, he can not handle the chemo brain.
Does this generally subside after the chemo is over? How long until he is back to thinking clearly? Or does it not completely resolve itself? Again, I know that people are all different but am hoping to be able to help him with his decision to forgo the last 6 treatments which put him done the day before Thanksgiving.
Thanks in advance for your help.
Melinda A

17

(175 replies, posted in General Discussion)

Sending positive thoughts and energy to you both.

18

(175 replies, posted in General Discussion)

Tom, I think you and Ben have touched the hearts of many people fighting the good fight, or supporting those who are currently faced with the cc challenge. Enjoy every minute of your stay at home. Your decision took a lot of courage but I think it was definitely the right one. Peace...love...hope.
Melinda

19

(175 replies, posted in General Discussion)

Dear Tom and Ben, Just read through all 6 pages of your posts and will include you both on my prayer list. I know it is trite to say, "Stay strong", but you have so many people pulling for you. Sounds like you're getting good care. I agree with Lainy, although it is definitely your decision to attend the wedding, I would advise you to go. Ben's sis in law will, I'm sure, take great care of him and will let you know if there is anything to bring you home. Caregivers really do need some time away to recharge and be ready to face the next chapter.
Positive energy and healing thoughts to you both.
Melinda

20

(11 replies, posted in Introductions!)

Welcome to a great site. I have read many links and posts from members and they have given me not only invaluable knowledge, but hope. Glad you are getting a second opinion. My husband's cancer also spread to his liver and they were able to remove it and follow up with chemo. Hang in there. You are not alone. Best wishes for your dad.

Hi Darlene, I'm so sorry that you are going through all of this as many of us are. My husband had great blood work, cancer markers normal and found the tumor incidentally due to blood in the urine. His only symptom was an unexplained weight loss, no itching or pain.  We started with the surgeon as well and was told that he would either do the chemo first or the resection if he was able.  My husband was diagnosed in April 19 of this year and had a resection for his 8x6x3cm tumor on May 2. Dr. Singh at the City of Hope in Duarte, CA took on this very difficult surgery  which was followed by the gem/cis regimen similar to what you are going through. He had his three month scan on August 4, and is still cancer free. We will go for six months and then have another scan. I would agree with the posters up above to get a second opinion from a hospital that has extensive experience with cc.  I think doctors and hospitals that do these resections frequently are better able or more willing to take on difficult cases. I'm not saying that doing chemo to reduce the size of the tumor is the wrong way to go, I'm just saying that some doctors are more aggressive at tackling these tumors that turn your world upside down.
Best of luck to you with your chemo treatments and upcoming scan on the 2nd. Stay head of the nausea with the meds that are prescribed and allow your body the rest that it so desperately craves.
Hang in there.
God Bless,
Melinda

22

(28 replies, posted in General Discussion)

Best news possible for three month check up. We just saw Dr. Gangandeep Singh at City of Hope and he explained that the shadows on John's three month ct scan were surgical remnants, meaning scar tissue and fluid accumulation from his resection on May 2.  John remains cancer free and blood work is good. Continuing with Gem/Cis until Thanksgiving, for a total of six months. I guess we will truly have reason to celebrate at this Saturday's family party at our house. Thank you all for your positive energy, prayers and encouragement. they kept me going until our appointment today. Nothing but great things to say about Dr. Singh and City of Hope for giving John the benefit of the doubt and doing the resection when others might have said it was inoperable.
Melinda

23

(28 replies, posted in General Discussion)

What a beautiful poem Lainy thank you for that...you're right, I got nothing I wanted and everything I needed. I will try to focus on this as I head into the day and weeks ahead of me. Some of your message is so familiar to me, especially the scrambled eggs with cheese and then apologizing because they tasted salty or "off".  I will try again with the Carnation and bananas...I will keep trying and will be strong. Thankful that our son will be home from DC on Friday and a family get together is planned for the 23rd. Both things to look forward to. I have to just keep positive, while recognizing his need to vent and just "be".
Thank you all. We'll see how the day goes.
Melinda A.

24

(28 replies, posted in General Discussion)

Dear Marion, Melinda B, Mary Beth, Gavin and Lainy,
You don't know how much your posts have helped. We just returned from dinner which John picked at and the whole time he was just so discouraged. It's so hard to carry on a conversation when he is afraid and disappointed that his chemo brain is preventing him from doing the things that came so easily in the past. John was a school principal for 37 years, all at the same school for severely handicapped students. The children were with him from age 3-22 and he often offered the only hope and inspiration that these parents received in a public school setting. Now, with his health in jeopardy, he doesn't allow himself to look beyond this blip in his treatment course.
The chemo is indeed been cumulative as this, his fourth round, is manifesting itself with longer and more severe nausea and lack of appetite. I know to push water and meal replacement shakes, etc., but it's just so hard when you see your Rock of Gibraltar start to chip and erode.
I will call tomorrow and see about getting an earlier appointment with Dr. Singh. The 25th was a date established back in May after his surgery. I know that I will be able to work something in as his doctor is such a compassionate man.
We will get through this and if it's bad news, we will weather that storm as well. It just sucks that a man who lived his live in service to his beloved severely retarded and handicapped children, can not have more than 2 years into retirement before faced with such an aggressive and deadly cancer. I have read success stories on this site. I know that people are walking miracles and have made it. I guess I'm just finally having a moment, brought on by seeing such a strong and caring man in pain.
To Rob, Mary Beth, and all those facing the anxiety that accompanies the wait...my prayers are being sent up for you all. As always, thank you all for your support and God Bless.
Melinda A.

25

(34 replies, posted in General Discussion)

Definitely a bump in the road. I'm sorry that everything seems to be an obstacle right now but keep fighting Julie....