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What Ammunition for The Big Cannon?

ecourtney
Posts: 40
Joined: Mar 2011

Hi All,
I am still preoccupied with what constitutes a “big cannon” and thought that I would compare 2 stage 4s, Lu’s early treatment with my brother Peter’s. (hope you don't mind Lu!) These are shown in summary below ( I hope I got Lu’s right) and show the very different approaches adopted. Lu had 28 days radiation at start of treatment wheras Peter had 10 days at end of his. Lu’s treatment cycle was much shorter and consultants opted for a different choice of drugs Perhaps minds greater than mine could help me understand the logic behind the different approaches. Did that extra radiation at start of treatment make a great difference? Is Cisplatin and Xeloda better than Epirubicin and Oxaliplatin? Was Lu's treatment altogether more aggressive than Peter's?
A point to note is that Peter’s Epirubicin was reduced after the third cycle as an alternative to giving him an injection to keep white blood cell count up (to save money we found out later) I would welcome any input here as it might help those considering stage 4 treatment plans understand key treatment issues.

LU's treatment
APRIL 1ST TO JUNE 2ND
RADIATION 28 DAYS TREATMENT AT START
CISPLATIN HI DOSE 4 X 5FU 96 HR INFUSIONS
XELODA 3000MG X14DAYS X 3 ROUNDS

PETER's treatment
7TH JUNE TO 25TH JANUARY
3 X 100MG EPIRUBICIN 2X 80MG EPIRUBICIN 1 X 50MG EPIRUBICIN (INTRAVENOUS)
6X 260MG OXALIPLATIN (INTRAVENOUS)
1X CISPLATIN ADMINISTERED OVERNIGHT
21 X 2400MG CAPECATIBANE (ORAL)
RADIATION 10 DAYS AT END
I Also appreciate that this might be too dry for many of you and understand if you give this a miss
God bless
Maurice

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

I'm glad you brought this subject up. I was also thinking about my husband's treatment, especially when I see those other Stage IV's who have beaten their cancer into remission. Yay for them! Unfortunately for my dear husband, his response was limited.

Wouldn't it depend on also whether the cancer is SCC or AC?
For the record, my husband has adenocarcinoma (AC) Stage IVb with (widespread)mets to lungs. His regimen, without fetching the paperwork, was:

Jan 24 to April 12 was FOLFOX6 every other week (IV infusion followed by pump for 48 hrs)for a total of 6 treatments (skip one week for minor infection). The Oxaliplatin in this FOLFOX wreaked havoc on his legs for the last 2 treatments and so then he had:

May 3 to May 17, Irinotecan with Platinol for the first treatment (IV 6 hours) and for the second, Irinotecan only (as the Platinol had started to affect his kidneys). This last treatment was rough in that he had absolutely no quality of life for the week after receiving the chemo.

He's had it with the chemo he says, and so has been on a break since May 17. Alas, his symtoms have just started to resurface with disease, namely his breathing is becoming short and his esophagus is narrow along a long stretch.

I had wondered if he had been given the best shot with the chemo he had. It's so hard to try to balance quality of life with a chance at remission. But these "big cannons" have such a deleterious toll on his health that I think he's completely done with chemo.

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

From what I have been hearing, both from our doctors, and extensive internet research, the type of chemo and dosages varies from person to person. For example, we were asked if we wanted to go for the 'big cannons' (not in those words of course) and suffer from the miserable side effects or go for something a bit weaker, risking less effectiveness, but fewer and more manageable side effects. It always seems to cycle back to the quality or quantity of life debate. We chose the highest dose possible for starters. Lee is otherwise very healthy, young (48) and strong. I think if he was more elderly and frail, they may have recommended lesser treatment.

There also seems to be a fairly significant difference between the IVA and IVB treatments. I guess once it reaches the other organs, your options become more limited.

Lee began treatment this past February and has now undergone 4 cycles of chemotherapy. His treatment involved iv cisplatin and epirubicin followed by 2 weeks capecitabine (xeloda) orally, repeated every 3 weeks. I am unsure of the dosages, but he was started on the maximum and after horrific side effects during the first 3 weeks, the doctor dropped the amounts by about 15%. Now we are left wondering if we would have had more benefits had we stuck it out, again quality or quantity!

CT scan showed shrinkage, so we were given the option to either continue chemo, or take a break for a few months and resume treatment if and when symptoms returned. As these options were only given to us last week, we are still debating which way we should go.

To backtrack slightly, a bit of history, Lee was diagnosed with stage IVb, adenocarcinoma with mets to the liver (15 spots found) There were also some lymph nodes which looked 'abnormal' (whatever that means!) We were not given the option for radiation during the initial treatment, nor was it an option after his 4 month CT scan. I don't honestly know if they are saving it for future use, or if they just think the cancer is untreatable. The radiation doc seemed to have a hand on the door for the whole appointment, so we did not feel welcome to ask any questions.

Fortunately at this point he is feeling great, eating very well and not having swallowing issues any more. The chemo seemed to help greatly with that, he was having to spit up food at every meal pre-chemo.

I guess it could be compared to Vegas, do you gamble big and put all your chips on the table, or do you spread it out and hope for smaller wins along the way?

Chantal

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

No radiation for us, either, even tho Steve is also young (54) and strong. I believe because his cancer isn't just a tumor, but rather spread along the length of the esophagus. Sometimes the place of the tumor is problematic, too close to the big artery or the heart, too.
I think when we go in on Tuesday to consult with the oncologist again, we'll have that same option: to either start a new session of chemo or just quit it at this point. All these choices and hoping to make the right one is tough.

ecourtney
Posts: 40
Joined: Mar 2011

Hi Chantal,
not sure what the radiation options are but I know that there are a number of postings on this so you should find more info on the site. Re the doc having a hand on the door if you will accept the advice of an "old" man (56!!) - don't miss a chance to ask that question when you have the opportunity. Good information is like gold dust and it's what we pay them for!
Re the big cannons it turns out that Peters first phase of treatment was every bit as aggressive as Lu's and he came out of that fairly well. Great to hear he's eating well from what I hear it's worth packing in the calories - again you will see some great postings on that on the site.
Unfortunately vegas is only money- we are playing with higher stakes.
Good luck with your choices- we're all rooting for you
Maurice

ecourtney
Posts: 40
Joined: Mar 2011

Hi Chantal,
not sure what the radiation options are but I know that there are a number of postings on this so you should find more info on the site. Re the doc having a hand on the door if you will accept the advice of an "old" man (56!!) - don't miss a chance to ask that question when you have the opportunity. Good information is like gold dust and it's what we pay them for!
Re the big cannons it turns out that Peters first phase of treatment was every bit as aggressive as Lu's and he came out of that fairly well. Great to hear he's eating well from what I hear it's worth packing in the calories - again you will see some great postings on that on the site.
Unfortunately vegas is only money- we are playing with higher stakes.
Good luck with your choices- we're all rooting for you
Maurice

ecourtney
Posts: 40
Joined: Mar 2011

Hi Jojo,
Thanks for replying... I don't think that there is any way of knowing what is right. Peter's consultant who had given the above treatment had decided to adopt a "wait and see" approach after this treatment but Peter felt abandoned with this and we sought a more interventionist approach which he managed to get at another facility. When he advised his first consultant that he had agreed a new plan elsewhere, his only comment when told what the treatment was "Interesting" when asked to say more all he would say was that as a professional he could not comment on other consultants plans.
On 31st March Peter started Taxotere plus Crisplatin infusions. He got this again 3 weeks later, this time with Herceptin as he had recently had a positive Her 2 test.
His health deteriorated badly following the 31st March dosage and it was "touch and go" in my mind if he should run with the second dosage but not in his. He felt that if he didn't fight this he was finished (talk about the ultimate catch 22!!!)On getting the second dosage his condition worsened further and soon after his kidney and liver both stopped operating effectively. On friday 13th May we got the bad news that time was running out quickly. From 31st March when we were plotting and planning to his passing on 19th May seems such a short time and the deterioration especially in the last 2 weeks was dramatic.
Can anyone say if he had not gone ahead with chemo on 31st March he would still be with us ??? In hindsight not going with chemo then would have been better in my mind but the question I have is why doctors would agree to treat if they feel that this is not in the patients best interests??? Good luck with your own choices. God Bless
Maurice

jojoshort's picture
jojoshort
Posts: 241
Joined: May 2011

Hey Maurice,
My husband has decided to forego anymore chemo, which the cancer doc totally agrees with. After only getting a limited response and some nasty side effects with the Big Cannons, there really isn't anything they could offer that would really do any good, and in any event, my husband wasn't interested.
Our big decision now--as my husband puts it--is to decide whether he would rather face lung deterioration due to his lung mets--and the misery of that-- or basically starvation due to his significant esophageal stricture. What a choice. We are doing reconnaisance (sp?) work now on a stent, which comes with its own host of problems sometimes. Luckily, we live near Boston and some of the best docs in the world. But what a choice.

Sadly, for us, the Big Cannons fell short of their mark. I'm glad he discontinued them and is now able to get out and about and enjoy things. I understand why your brother chose to try one more session of chemo--that chance that maybe, just maybe, he would get a good response and shrink the cancer.

If only we had a crystal ball.

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

Hi
I think I need that crystal ball, if you can find one lying around somewhere, we have just decided to go ahead with another round of Chemo, now after reading these I'm not sure again. Mark dearly wants to and we can stop if it gets too much. He did handle the big cannons really well, with only a little nausea and a few days each session of being really tired. I so want whats best for him, but it is so hard to figure out what is best for him. After the last scan, we know that his initial tumor is growing and he has a host of smaller tumors on his lungs, which I think is affecting his breathing giving him a little cough, kind of like he has a crumb in his throat and just in the last week his voice sounds strange, like he's nearly losing it and yet he says he doesn't have a sore throat, so not sure what thats about, anyways he is booked for his first session on the 21st, so plenty of time to change our minds again. Friday he is going for the esophageal stretch so hopefully that will help on the eating front. sorry to have rambled, thinking of you all.
Ann

ecourtney
Posts: 40
Joined: Mar 2011

Hi Ann,
I hope we have not made choices more difficult for Mark and you than they already are. Since each case is different, what's best in one case might not be in another. I wish we could say when the "tipping point" might be with regards to saying no more chemo. It would also depend on the stage of the spread.Regards his throat, thrush is not uncommon so you might find it is that. Good luck on friday!
Maurice

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

Thanks Maurice
I think the choices will always be difficult, being able to talk to people who have been there and give you their opinions about what worked and didn't work for them is really helpful, it might not make it any easier but gives you a better knowledge base, thanks for the tip on thrush will look into it.
Ann

ecourtney
Posts: 40
Joined: Mar 2011

Just remembered that another cause of throat problems can be scarring caused by radiation. Apparently scars heal just like surface scars might with crusty like surfaces etc. If radiotherapy has been involved this could be a cause
Good luck
Maurice

fredswilma's picture
fredswilma
Posts: 196
Joined: Mar 2011

Hi Maurice
Thanks for that, Mark was never given radiation as the tumor spread was to great and they thought the radiation could have had worse affects on other major organs. We had the endoscopy on Friday where they discovered that the tumor had not closed the eosaphagus, but the tumor had stopped the muscles in his oesaphagus working right so it is not forcing the food down, and they think the effect of saliva coming back us is what is irritating his throat. We have decided to go ahead with another round of chemo, starting Tuesday, hoping for the best, this is a road that I'm sure will have many bumps but we are hoping he handles it well, Thanks for all you advice. Thinking of you all.
Ann

ecourtney
Posts: 40
Joined: Mar 2011

Thanks for letting us all know how Marks endoscopy went. It helps everyone understand the numerous " reasons" there are for suffering with digestion issues.I have a great deal of admiration for the positive way that you and Mark are taking on this battle and now that you have opted for more chemo, I know that Sherri and William along with others on the site can best advise on "battle readiness" i.e. packing in the calories, hydration, latest developments in the J-tube.
Good luck on Tuesday and going forward
Maurice

megmacmd
Posts: 94
Joined: Jun 2011

I was diagnosed March will stage 3 but nodes above and below the diapragm lungs and intraabdominal I am 57 yo female never smoked or drank did have GERD I am a Pediatrician so adult medicine is not my forteit. Iwas told surgery and radiation were not an option I trust my docs because they are all friends and collegueas and know this is very bad and are giving me the straight scoop I started foxflur regime am on my 6th treatment every other week had some initial response but the side effects of numbness and tingling not feeling well and nausea and tiredness and no appetite everything tastes awfull And I love to cook and eat. Lost my husband of 30 years to a freak cerebral anuersym one beautiful summer morning here in Va Beach my children are grown the last one a 3rd year at University of Virginia I am thinking I would rather live my last months or year or so in quality and am thinking of stopping the chemo many people have different reactions but I have lost my dad to bladder cancer 4 years ago he was 82 and had a great life ,my sister died 3 years ago of breast cancer she fought it tooth and nail and was pretty miserable her last 2 years my mom died last year of breat cancer at 83 she choose to let nature take it course and played crouquet and bridge sang in the church choir until thelast 2months theyhad given her 6 months she lasted 2 years SoI am debating whether to stop chemo and really believe after reading all the postings it doesnt matter it is just random luck and a matter of attitude as long as you feel Ok why not live life and take your chances? Myhusband used to say we are all dying the minute we take our firstbreath noone know howlong so live life on lifes terms to the fullest Meg

ecourtney
Posts: 40
Joined: Mar 2011

HI Megmac
Sorry to hear about the premature passing of your husband and sister and the loss of you mum last year but it's great that your dad had a full life. I'm always at a loss to understand how some families seem to just be hit as hard as this over such a short time period. I'm sure all of your friends here would like to think that you and your children are well overdue a break!
The basis for the ammunition debate on this thread has largely been around stage 4's who are facing stark choices at a time when the disease has an unrelenting grip and know that risks v benefits from chemo and radiation are almost impossible to define.
For stage 3's though I understand that it's a different ball park as survivors such as Wm Marshall, still thankfully with us after 9 years will testify. Did you ever get around to chatting to him? If not I would urge you to do so. Ultimately only you can choose how you want to proceed but please listen to the stage 3 success stories before deciding. As a final point please forgive me if I overstep the line, but could I ask you if your friends and colleagues are in the correct branch of medicine to advise? A little knowledge can be a dangerous thing.
Please have a chat with your stage friends!!!
Maurice

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

I urge you to seek a second opinion. I'm sure your friends have your best interests in mind, but you should have the advice of an independent, objective expert in the area of EC. You don't give any reasons why your stage 3 is inoperable, but it sounds like an unusual diagnosis. Stage 3 is generally considered curable. And if it is, indeed, inoperable, chemotherapy is your best shot at a cure.

I don't think anyone on this board is advocating stopping an initial phase of chemotherapy prematurely in the absence of major medical issues. This and other discussions among stage IV patients about ending chemo relates to the 2nd or 3rd time around, when there's a recurrence or if the first phase doesn't produce results. I and most other stage IVs have completed an entire initial phase of chemotherapy and as tough as it was for all of us, I don't think there are any regrets (at least I have none.)

You may find that you recover from its ill effects faster than you think, and you will soon be living a strong and fulfilling life again. But I would give it a full chance to do its job first.

Another inoperable stage III patient used to post here, but now has a blog. He's doing well after completing chemotherapy. His tumor was right against his larynx and surgeons recommended against surgery. They still believe he may be cured with chemoradiation alone. He looks good in his latest photo, having just returned from a vacation in Switzerland, 18 months after his diagnosis. Please take a look:

http://dancancerfree.blogspot.com/

Lu in Oregon

paul61's picture
paul61
Posts: 1110
Joined: Apr 2010

Meg,

I know chemotherapy is difficult. I am not sure why, as a Stage III, that surgery is not an option but I would suggest that giving a full run of your treatment regimen is worth the difficulties. I know that when I was undergoing chemo, there were times when I questioned if it was worth it. I sometimes asked myself, “what if I am going through all this for nothing?” One day I said to my wife, “If this is an example of how the rest of my life is going to feel I would just as soon be gone”.

Well; I have finished chemo, and have been fortunate enough to have clear scans and endoscopies since then. I am now a year out from finishing my chemo and am feeling as good as I felt before I was diagnosed with EC.

My oncologist told me that one of the side effects of some of the chemotherapy drugs is depression. And of course dealing with a diagnosis of cancer is reason enough to be depressed anyway. I would not fully trust my ability to make a rational decision while undergoing chemotherapy without lots of input from my friends, particularly input from people who have been where you are now.

Meg, this friend says “Give the full range of your chemo treatment a chance”. Then if the tests show it did not have the expected effect you can decide at that point.

With great concern,

Paul Adams
McCormick, South Carolina

DX 10/22/2009 T2N1M0 Stage IIB
12/03/2009 Ivor Lewis
2/8 through 6/14/2010 Adjuvant Chemo Cisplatin, Epirubicin, 5 FU
6/21/2010 CT Scan NED
3/14/2011 CT Scan NED

Life may not be the party we hoped for, but while we are here we might as well dance!

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

This might shed some light: I was told by my treating oncologist (a general oncologist) that he gave me the strongest, most aggressive treatment regimen. The EC specialists I consulted later disagreed. They told me I had NOT received what they considered "full-dose systemic therapy." In their opinion, the tree-drug regimen that your brother had is among the most aggressive (ECF, Folfox, etc.), more aggressive than the Cisplatin/5FU. When I discussed this discrepancy with my doctor, he explained that he personally would not prescribe a 3-drug regimen in conjunction with concurrent radiation as the toxicities would be intolerable. Thus, tacitly acknowledging that there are more aggressive regimens than I received.

So it would seem that the determinitive factor in what chemo drugs are used might be whether radiation is indicated for the patient. Also, younger, stronger patients with a more aggressive treating physician than I had, might be given the 3-drug combos with radiation.

Just extrapolating from the posts on this forum, it seems that metastasis to the liver automatically rules out radiation, therefor calling for more aggressive chemo. And more aggressive chemo means higher toxicity levels and more sever, more persistent side effects, which is what puts stage IV patients with extensive metastases between that rock and the proverbial hard place.

(A word about radiation---it is strictly palliative and not curative for stage IV. In my case, it was successful in preventing all those issues relating to the inability to swallow -- I avoided stents and feeding tubes with successful radiation. But the radiation did not stop the spread of the cancer.)

Lu

ecourtney
Posts: 40
Joined: Mar 2011

Hi Lu
Thanks for reply .I now understand that Peter's phase 1 treatment of 3x chemo drugs plus 10 days radiation was aggressive and must have taken account of his age (50) and strength. He apparently came out of this in relative good order. At the risk of repeating myself it was as the phase 2 treatment progressed the deterioration kicked in.
Having started this debate going though I think I will now stand aside as I don't want to unduly influence others with their own very personal big decisions and I feel I'm getting close to doing that. I am happy to answer more questions if I can and hope the debate carries on as I know that the quality v chemo question will arise for all stage 4s (and some earlier??) at some point and minds greater than mine can provide greater insight.
Good luck and keep on posting!

Daisylin's picture
Daisylin
Posts: 380
Joined: May 2011

Maurice, I don't think that you were unduly influencing anyone's final decision, just giving us your brother's history. I hope that everyone here is able to take this site for what it is.... advice, support and encouragement. I for one truly appreciate everyone's opinions and information.

We all know that every case is different, and every treatment is tolerated differently. What works for one may not work for another. Your opinions and observations are always intelligent and informative. If anyone makes a decision based on reading these forums, they are more educated and aware than the average joe, who is not seeking help online. We have all heard and/or experienced lack of information from doctors. Sometimes they seem to have different objectives than us, the patient. It is great to come here, and seek advice from friends who have been there - done that. I feel that I have learned more here, than from our doctor. I'm sure I'm not the only one who would say that. I have been better prepared for doctor's visits thanks to this site, and people like you Maurice!

I may not take the advice given, or agree with some of the philosophies stated by the other members here, but I certainly respect their courage, honesty and determination to fight this beast. We are in the midst of deciding on our next course of action, another round of the big cannons, or take a break, and after 2 weeks we are still bouncing back and forth. This discussion has been very helpful to us. My husband has not been posting here, but has been reading a lot of the threads here. We are thankful to everyone who has replied to my questions along the way!

Cheers,
Chantal

ecourtney
Posts: 40
Joined: Mar 2011

tHi Chantal,
Thanks for the kind words I'm encouraged to see that you are getting as much from the site as I do. Peter certainly felt that he was speaking the same language as the docs and It's a definite advantage to be "tuned in" when having some bewildering discussions which leave you with critical choice. Possibly the most important thing of all is your togetherness.Having someone batting for you adds tremendously to your mental outlook.
All the best with your choice.
Speaking of gambling its 6pm in Scotland and we are just heading out to the cAsino to celebrate my sons 24th birthday. I dont gamble but the food and company are great!!
Cheers
Maurice

Callaloo's picture
Callaloo
Posts: 147
Joined: Nov 2010

Thanks Sherri, that's good to know. I just wonder why radiation seems to be withheld in so many cases.

sandy1943's picture
sandy1943
Posts: 883
Joined: Jun 2010

I had stage 111. My dr. did not do radiation. After I came on this site and learned all that I have, I asked him why. He and some other dr's did a several year study. He said that they determined rad. did more harm than good for the long term. I don't know if this is right or wrong, but I have been NED for three years. Keep in mine I was stage 111, not IV.
Sandra

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