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We need some serious advice and information/Serious Recurrence

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

I had to take my husband back to the hospital yesterday. This is his 6th hospitalization since late November.He has developed a new fistula. In the process of diagnosing that, the CT scan revealed some aggressive growth (doubling) over the last month of a tumor at his abdominal wall. The surgeon doesn't want to operate again--at least at this point. (My husband is young for his age but he is 92 and he just had surgery in November 2009. While he is weaker because of the ordeal of the last four months, he still has a lot of spunk!) The oncologist seemed pretty dismal when we talked to him. His new plan is for Dixon to take Xeloda and add Oxyplatin (I'm not sure of the spelling). The part I didn't like was that he said we only had a 50/50 chance of this slowing or stopping the growth of the tumor with this new chemotherapy plan. I asked him if there were other drugs to try and he said "no." I'm pretty shaken to hear this. I thought there were other drugs to try.

I'm a fighter but I'm devastated by this turn of events. We need all the information any of you can share with us.

I did tell the oncologist this morning that we want a "plan B," something other than giving up if this chemotherapy doesn't work. I suggested that we wanted to pursue some opinions from other hospitals. Our hospital, Hoag, is a private and highly-respected hospital but it is not a NCI hospital. So, I'm going to look into USC, UCLA and City of Hope (maybe others). He was amenable to that and suggested Dr. Lenz at USC. I know Lisa42 and others have mentioned him.

My husband's tumor(s) are localized in the abdominal wall but they have penetrated into his intestines in the past. The theory this time is that the fistula is now being caused by more tumor growth through the abdominal wall and into the intestines. My husband's tumors have been localized in the abdominal area and to this time have not spread to other organs. He is stage four, first diagnosed in 2006.

The fistula, of course, complicates our situation, but certainly doctors at cancer research hospitals must have dealt with cancer-caused fistulas in the past.

Thank you in advance for any information you can share.

Hatshepsut

maglets's picture
maglets
Posts: 2596
Joined: Jun 2006

I am sorry Hatshepsut I have no advice. My last chemo was oxalyplatin and xeloda and I have no knowledge of chemo drugs after those.
You are such a fine advocate for husband. I am proud of you. I hope you find some answers and a Plan B.

There is a 4 part lecture series on Egyptian mythology and history at our local museum...I am attending and it makes me think of you.

All best wishes,

mags

John23's picture
John23
Posts: 2140
Joined: Jan 2007

You might want to look into what research the SCRI has.

Radical situations can call for what others consider "radical" solutions.

John

Sundanceh's picture
Sundanceh
Posts: 4408
Joined: Jun 2009

Hatsepshut

I would add that AVASTIN would be a good drug to have your husband do - it especially works well with Xeloda and Oxaliplatin taking concurrently.

Irontecan (CPT-11 or Camptosar)known as the combo of Folfiri would also be another chemo they could try. Also works with Xeloda and Oxaliplatin as well.

This makes sense to ask about when you see your onc, or go for a 2nd opinion, be sure to ask them about it. Avastin "chokes off" the blood supply to the tumor(s) and is tolerated pretty well by most people.

While he was doing the big guns, I think very much that this would give his treatments that "extra boost" while he is taking those.

I can offer you this suggestion and hope that Dixon will be getting better soon. You know how I feel about you both and what you've been through. It hurts me to see you in such anguish. I know you're a fighter.

2nd opinion is a great idea - a must idea really. I know you want to do everything possible to make sure you are getting all the help you both need.

I remember a post you opened some time back and you said, "I need this board." Well, we certainly need you :)

I'm anxious to see what you uncover. Please let us know when you are able to - obviously, you have alot going on.

Tell Dixon and Misty HI for me:)

-Craig

sfmarie's picture
sfmarie
Posts: 605
Joined: Aug 2009

at USC, UCLA and City of Hope. My sister has seen Lenz, several occasions. He is the one that scheduled the liver resection 2/10 that was basically open/close although they did resect a part of the colon where they saw another blockage. UCLA was basically a bust for her (they felt there was nothing to be done and that Avastin and Erbitux were expensive life extensions). Also saw an onc. at City of Hope, which did not really offer anything different. I do believe Lenz is THE man, though it can mean a less personalized experience. You really need to be your own advocate with him.

Praying there are options for Dixon.

Marie

geotina's picture
geotina
Posts: 2123
Joined: Oct 2009

The only thing I can offer is what Craig already said, ask about adding Avastin to the mix. Take care - Tina

tootsie1's picture
tootsie1
Posts: 5065
Joined: Feb 2008

I honestly don't have any information for you, but I am thinking of y'all and praying that you will find something that will make a difference.

*hugs*
Gail

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

I am not familiar with which of the chemo drugs your husband has already had. Reactions to the chemo drugs seems to be individualized. I was given xeloda because my oncologist thought it would be "easier" on me than intravenous 5FU. However, the xeloda was somewhat toxic to my system, eventually causing elevated liver enzymes. I had to stop all chemo for 4 weeks and take steroids which have caused other side effects for me. When I resumed chemo, the xeloda was not effective and I was switched to 5FU. I have no side effects from the 5FU and it has actually lowered my CEA, which the Xeloda never did. All of this is a long way of saying that xeloda is not necessarily easier on the patient than 5FU. There might be fewer side effects with systemic 5FU than the xeloda and, for me, the 5FU has been much more helpful than the xeloda was.

scouty's picture
scouty
Posts: 1976
Joined: Apr 2004

Lorraine

Thinking about you, Dixon, and Ms Misty.

Lisa P.

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Craig, you are so right. Like so many people who post here, I do need the information and support that this board is capable of giving.

To those of you who have responded to my post about the negative turn in my husband's health over the last few days, I appreciate the kind words of support and the valuable suggestions you have given us. I did discuss several of the drugs you suggested with the oncologist today and will continue my discussion on the subject on Tuesday when we have an office appointment. Have any of you gone back on the same chemotherapy drugs that you used previously? My husband has used Xeloda, Avastin and Camptosar before. The oncologist is recommending Xeloda again but not the Avastin and Camptosar he used before. My husband hasn't used the Avastin or the Camptosar for at least two years. It would seem to me that those drugs can't be ruled out as ineffective, but perhaps I just don't understand.

I have also e-mailed an appointment inquiry to Dr. Lenz' office at USC. And, I have begun to get copies of scans, records, etc. from the imaging services we used and from the hospital. I would appreciate hearing from anyone who has had experiences, good or bad, with NCI Cancer Hospitals in Southern California. (I've received a couple of important e-mails on this subject and I am very grateful to those persons for sharing their wisdom and their experiences.)

To be very candid with you, though, today was another very difficult day for me.I get pretty mad at myself for crying, but there were a lot of tears today. The doctors all hedge their statements to us about my husband's care and future. It seems pretty hard for them to speak words of optimism and encouragement. I find it very difficult to be surrounded by such negativity. Most disturbing to me, though, was the social worker who tried to comfort me by telling me she understood how upset I was by saying that my husband's health crisis was a true (and, by implication, continuing) nightmare. I am, frankly, trying to keep some hope in my mind that we can deal with this turn of events. I don't need to be surrounded by defeatists. Perhaps I'm wrong about this but I believe that a person like my husband, who looks great and feels pretty darn good, can't (and shouldn't ) be written off.

Hatshepsut

AnneCan
Posts: 3692
Joined: Oct 2009

Hatshepsut,

I want you to know that I am thinking of you + your husband, + hope you will soon be surrounded by positivity rather than negativity. I am sorry that the social worker didn't support you in the right way; some of these "professionals" are much better than others. I am fortunate to have a social worker at my cancer centre who is fantastic, + talks about things like when I will be relaxing on a beach - I am sure looking forward to that! You should not get angry at yourself for crying; we all need to do that from time to time; it helps relieve stress. You are a wonderful support to your husband, + he sounds wonderful too. I am glad he looks great + feels pretty good too. I always enjoy your posts; they are always thoughtful. Take good care!

PhillieG's picture
PhillieG
Posts: 4912
Joined: May 2005

It's a lot to have gone through since November. I can only parrot the advice that's been given to you. The Avastin has done wonders for many of us out here. The only other things I can offer are the possibility of Erbitux and to try to keep the positive attitudes going strong, it works wonders but not always as easily said as done.
All my best to you both.
-phil

ADKer's picture
ADKer
Posts: 150
Joined: Aug 2008

Although it is often effective and helpful, I suspect the problem with avastin for your husband is that avastin interferes with healing and that might be an issue with your husband's fistula. I believe that your husband has not had oxaliplatin - is that correct? Although many people have some difficulty with it, I did not and it was very effective. After about 11 sessions, I did develop neuropathy which has mostly gone away over the year+ since it was stopped. I believe that the oxaliplatin is less toxic to one's liver than the irinotecan. There is just the sensitivity to cold while one is receiving the oxaliplatin (this is totally temporary and ends as soon as the drug is stopped) and the neuropathy.

I was quite discouraged a few months ago because I have lung mets that are inoperable and the chemo I was taking - xeloda - was only keeping them stable. Fortunately, the xeloda quit working and I was switched to 5FU. I was very pleasantly surprised when the 5FU decreased my CEA by almost half in 4 weeks and seems to be having an impact on the lung mets. My point is try to stay calm and positive - you may be pleasantly surprised by your husband's response to chemo, particularly if they try something he has not done before.

lisa42's picture
lisa42
Posts: 3661
Joined: Jul 2008

Hatshepsut,

I am sending you a PM with some specific info on going to USC.

Lisa

JDuke's picture
JDuke
Posts: 443
Joined: Nov 2009

I do not have any suggestions to offer, but wanted you to know that I will be thinking positive thoughts for both you and your husband.

Hatshepsut's picture
Hatshepsut
Posts: 340
Joined: Nov 2006

Again, thank you for giving us encouragement and support.

My husband is home. He is feeling well and just had a healthy bowel movement (sorry to be graphic). We are controlling his pain with mild pain medicines. The doctors and the wound care nurse at the hospital decided that the wound vac would not/could not work to evacuate the materials flowing out from my husband's fistula. They choose to apply an ostomy bag and allow the fistula to empty from the intestine normally. This allows my husband to eat and enjoy a full-liquid diet rather than face the risks of a PICC Line-connection to TPN nutrition.

The surgeon decided that it was unlikely that my husband's fistula would heal spontaneously (because he theorizes that the hole in my husband's intestine is caused by tumor growth) and that it would be too risky to perform another surgery at this point. (My husband's last surgery was four months ago.)

The oncologist continues to recommend stepped-up chemotherapy with Xeloda and Oxyplatinum (did I spell that correctly?). My husband has not had chemotherapy for a couple of years (Xeloda, Avastin and Camptosar).

I continue to try to support my husband's healing with a vegan diet and juicing.

We have an office appointment with our oncologist on Tuesday.

As some of you know from my posts, my husband is a very young 92 years old. I worry that some doctors discount his treatment options based upon his age.

Hatshepsut

coloCan
Posts: 1956
Joined: Oct 2009

dated 3/16 entitled :"Chemo Use Spotty in Older Colon Cancer Patients" in which "old" was over 75. "Older colon cancer patients tended to undergo milder chemotheraphy regimes after surgery than younger patients, witrh fewer adverse effects but they may not have reaped the full benefits of the treatment, researchers found."
Might want to keep this in mind when speaking with your medical team.....Steve

Patteee's picture
Patteee
Posts: 950
Joined: Jul 2009

Hi

I know when my grandmother was 98 and was dx's with colon cancer- they didn't do anything. Felt that treatment would kill her more than likely before CC would. She lived another 2 years without any treatment. With an elderly auntie- same thing- they did a resection to help with her quality of life, but nothing more. I do think they take into account how old someone is. I would hope for an open minded doctor, someone who knows your husband and is willing to go the extra mile and NOT use age as a factor. That one I think would be hard Hatshepsut for any doctor. I would encourage you to be direct with whoever you talk with and consult with. Along the lines of, "if he were 52 and not 92 how would the treatment be different?" Ya know, get your concerns right out there. That you DON'T want him to be dismissed for treatment options based on his age. That he is not a typical 92 year old and to treat him as a unique individual!

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