One more session of Cisplatin? Maybe not?
Advice?
Comments
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Hi Roger
I hate when our doctors disagree and the decision is left in our hand. I did my chemo once a week for up to one month after my radiation stopped, but was not sure if I needed it or not. See if you can get a second opinion from a doctor you trust and then go with what you think is best.
Wishing you well
Hondo0 -
Literature agrees with chemo doc
The last few things I read said that 2 rounds of chemo were as good as 3 rounds, for HPV-caused H&NC. We faced the same decision - Doug had the hiccups with both chemos, bad nausea/vomiting after the second, which went on for weeks and was not controlled by any of the normal drugs, low WBC after the first chemo (delayed the second) and bilateral PE's (the last was a surprise, as he was still quite active and had no symptoms). He lost 45 lbs and only 5 of that was "spare" so we were all very glad when the chemo guy said no to the third round.
My brother-in-law the research doctor at Pfizer says that they judge the effectiveness of the chemo by the rate it shrinks the primary tumor. In Doug's case, since the primary was taken out, he was paying attention to the lymph node in his neck. It shrank quite nicely and stopped shrinking only because all the tissue was dead and was not getting broken down by his system. Of course, we didn't find that part out until the partial dissection later on (which is why doing the dissection after treatment, if ever, is popular - you have something to judge progress by).
Our rad doctor was very careful about treading on the chemo doctor's territory and vice versa. I'd tend to take the chemo doctor's advice about chemo, and the rad doctor's advice about rads. . . .0 -
My oncologist stated fromDrMary said:Literature agrees with chemo doc
The last few things I read said that 2 rounds of chemo were as good as 3 rounds, for HPV-caused H&NC. We faced the same decision - Doug had the hiccups with both chemos, bad nausea/vomiting after the second, which went on for weeks and was not controlled by any of the normal drugs, low WBC after the first chemo (delayed the second) and bilateral PE's (the last was a surprise, as he was still quite active and had no symptoms). He lost 45 lbs and only 5 of that was "spare" so we were all very glad when the chemo guy said no to the third round.
My brother-in-law the research doctor at Pfizer says that they judge the effectiveness of the chemo by the rate it shrinks the primary tumor. In Doug's case, since the primary was taken out, he was paying attention to the lymph node in his neck. It shrank quite nicely and stopped shrinking only because all the tissue was dead and was not getting broken down by his system. Of course, we didn't find that part out until the partial dissection later on (which is why doing the dissection after treatment, if ever, is popular - you have something to judge progress by).
Our rad doctor was very careful about treading on the chemo doctor's territory and vice versa. I'd tend to take the chemo doctor's advice about chemo, and the rad doctor's advice about rads. . . .
My oncologist stated from the beginning that I'd only do 2 round of Cisplatin, relying on the research that there is not a signifiant difference in outcomes for people who do 2 rounds versus three rounds. I'd already had surgery to remove the tumor, so the rads/meds were to treat concerns over a lymph node. I will say that it was good for my morale to know I didn't have to do the third round, since the chemo weeks were the worst.0 -
My oncologist stated fromDrMary said:Literature agrees with chemo doc
The last few things I read said that 2 rounds of chemo were as good as 3 rounds, for HPV-caused H&NC. We faced the same decision - Doug had the hiccups with both chemos, bad nausea/vomiting after the second, which went on for weeks and was not controlled by any of the normal drugs, low WBC after the first chemo (delayed the second) and bilateral PE's (the last was a surprise, as he was still quite active and had no symptoms). He lost 45 lbs and only 5 of that was "spare" so we were all very glad when the chemo guy said no to the third round.
My brother-in-law the research doctor at Pfizer says that they judge the effectiveness of the chemo by the rate it shrinks the primary tumor. In Doug's case, since the primary was taken out, he was paying attention to the lymph node in his neck. It shrank quite nicely and stopped shrinking only because all the tissue was dead and was not getting broken down by his system. Of course, we didn't find that part out until the partial dissection later on (which is why doing the dissection after treatment, if ever, is popular - you have something to judge progress by).
Our rad doctor was very careful about treading on the chemo doctor's territory and vice versa. I'd tend to take the chemo doctor's advice about chemo, and the rad doctor's advice about rads. . . .
My oncologist stated from the beginning that I'd only do 2 round of Cisplatin, relying on the research that there is not a signifiant difference in outcomes for people who do 2 rounds versus three rounds. I'd already had surgery to remove the tumor, so the rads/meds were to treat concerns over a lymph node. I will say that it was good for my morale to know I didn't have to do the third round, since the chemo weeks were the worst.0 -
The academics behind taking the next course
of chemo are pretty non-existent. And having recently been through my third course of carboplatin, if your experience is similar to mine, the side-effects will be more, not less. With respect to your radiation oncologist, his area of expertise is in irradiating malignancy. The medical oncologist is the expert on the chemo. You are just a complication or two away from some pretty heavy stuff Roger.
I get a fourth round of chemo in 10 days. Can't wait:)0 -
Yeplongtermsurvivor said:The academics behind taking the next course
of chemo are pretty non-existent. And having recently been through my third course of carboplatin, if your experience is similar to mine, the side-effects will be more, not less. With respect to your radiation oncologist, his area of expertise is in irradiating malignancy. The medical oncologist is the expert on the chemo. You are just a complication or two away from some pretty heavy stuff Roger.
I get a fourth round of chemo in 10 days. Can't wait:)
My inclination with regard to chemo would be to go with my Onco Man, who specializes in this. I agree with longterm and will add that in my opinion,none of this is an exact science anyway.
Normally, I would suggest being very aggressive and going for it (if it were me, I would), but I think the advice of Onco Man supercedes in this case.
Whichever way you go, know that in the end it will all be behind you and you will hopefully be fine (which is why I generally go the agressive route).
Best wishes to you and your family.
Take care,
Joe0 -
Sounds like
You really should go with what your oncologist says.. There are lots of people who do not get that third round of cisplatin where we were...mayo. They did not push for it strongly but, my husband was bound and determined to get it. They lowered his dosage by 25 percent. Has anyone considered lowering your dosage? His was reduced because his kidney function was compromised just slightly.
Know you will make the right decision!
My best, Robin0 -
Choices
In my case, both my rad onco and chemo onco work for the same group, so they are both aware of what the other is doing. I had 3 rounds of cisplatin/taxotore/5fu, now currently getting carboplatin once a week for each week of rads , the chemo regime I've had/have was set up by my chemo onco. so far so good on all fronts, but like others have written, I do think about the long term effects when all is said and done.
Linda0 -
No advice, just an observationrobinleigh said:Sounds like
You really should go with what your oncologist says.. There are lots of people who do not get that third round of cisplatin where we were...mayo. They did not push for it strongly but, my husband was bound and determined to get it. They lowered his dosage by 25 percent. Has anyone considered lowering your dosage? His was reduced because his kidney function was compromised just slightly.
Know you will make the right decision!
My best, Robin
You don't give any real reasons for not doing the last chemo. I understand the tube incident scared you deeply but you are negating the reason for the tube. Weight loss, weakness, hiccups, pain, are all part of chemo. The chemo doctor is echoing your concerns back to you and he/she hasn't said no to the chemo. 2 or 3% is a really big deal to a pancreatic cancer patient who has a 5% survival rate. What are your chances of surviving chemo?0 -
Erbatox
Roger,
Cute little girls, I can tell daddy is proud of them.
Jim was unable to have the third chemo because it effected his kidney function. The RAD doctor didn't like that decision and talked with the Chemo doctor about finishing with Erbatox which the chemo doctor agreed to do the last two weeks. Jim missed 5 Rad treatments but made them up at the end. My opinion is the same as the others, go with the oncologist for chemo and the Rad doc for rad treatmeents.
Blessings
Debbie0 -
Chemo/Rads
I'd go with the Chemo MD's suggestion...after all that's his specialty.
As far as I'm concerned, each profession should respect the others experience and training.
I agree with Joe, I'm for the most aggressive approach. But I also listened to my MD's and thankfully they all made good decisions.
BTW, I had all three rounds...if you can do it, that would be my approach.
Best,
John0 -
Would not
I would not do the third round Sam I am, I would not do it with green eggs and ham (my hearing loss and tinnitus came with my third round of Cisplatin, IMHO). T don't believe in absorbing the shock and strain of the kitchen sink with the stats and medical opinions you've received. The hard question is: If you have a recurrance, will you be able to believe that not getting the third round was not necessarily the cause. If you can't do that, then you might want the third round, but see about Carboplatin if that's the case.
best, Hal0 -
When I was originally considering cisplatin I read that 2/3 of the people do not complete the third dose, this the high dose regime that I am referring to. My onc comfirmed this and gave me the impression that it was not a big deal. As far a recurrance goes I would face that if it ever occurs and even then there are options. Erbitux is recommended for that very thing.Hal61 said:Would not
I would not do the third round Sam I am, I would not do it with green eggs and ham (my hearing loss and tinnitus came with my third round of Cisplatin, IMHO). T don't believe in absorbing the shock and strain of the kitchen sink with the stats and medical opinions you've received. The hard question is: If you have a recurrance, will you be able to believe that not getting the third round was not necessarily the cause. If you can't do that, then you might want the third round, but see about Carboplatin if that's the case.
best, Hal
John0 -
Been there
I was faced with the same dilemma Roger and the Cisplain I was sure was going to be my cause of death but my daughter came to the rescue and dug into the white papers, then asked the Chemo Doc if there was any play in Cisplatin dosage. (she knew there was) Low and behold, she negotiated a 20% reduction in the last dose and long as it was done in conjunction with the radiation. One of the things often left out of discussion is that for tonsil cancer, chemo is considered largely ineffective when administered as the sole treatment. It is true that a large percentage of people do not complete the entire 3 rounds but each and every one of my doctors including the Radiation guy firmly believed that the key to successful treatment was the completion of it. They believe that the third round does indeed decrease the instance of recurrence significantly which we're all aware approaches 50 to 60%. If it reduces it by even 10% it is something to consider.
According to their guidelines they can reduce it by as much as 25% without affecting their outcomes. It had an enormous effect on how I handled it.0 -
I agree with my wife DrMaryjtl said:When I was originally considering cisplatin I read that 2/3 of the people do not complete the third dose, this the high dose regime that I am referring to. My onc comfirmed this and gave me the impression that it was not a big deal. As far a recurrance goes I would face that if it ever occurs and even then there are options. Erbitux is recommended for that very thing.
John
Really!
From the perspective of the patient who got only two rounds and not three, I think you should stick where you are. Tell the dealer you don’t want any more cards.
My rad onc and med onc worked as close as you can (and were terrific) but it was ultimately the med onc – and my – call. The second dose almost killed me and I was just so sick after that that we couldn’t do the last one on time. It was with the greatest relief that I heard that he just felt that it was medically unsound to put me through another. As it is, I think my hearing was affected by the cisplatin I did have.
By the way, it was exactly a year ago this week that I was finishing treatment. (see photo at left) The clean scans in February (pre-neck dissection) and in August suggest that the avoidance of the third had no effect. So, I am not a doctor, but I have been in exactly your shoes and that is my opinion.
In the month after I finished treatment I gained back more than 15 pounds; I hope for as much for you. Doug0 -
I THINK IT ALL DEPENDS ON THE INDIVIDUAL DIAGNOSIS
I did the 3 rounds of Cisplatin, and am glad I did. I was re staged after my second surgery to stage 4B. Mine was very aggressive, and had spread into soft tissue. 2 rounds VS 3 was never discussed, and I feel that based on what they actually found and took out of me after 3 surgeries led them to my treatment plan.
2 VS 3 may be a topic of research, but I am convinced that each one of us even with an identical cancer is still very much an individual case for what treatment modality is best for you.
Personally, why risk a return, or wonder if you did the right thing. If you are 100% comfortable with your team, then follow what they say.I think the only side effect I have from the Cisplatin is Tinnitus in my right ear, and I have lost probably 30-50% of my hearing in my right ear.
I can live with that.
Best
Mike0 -
I'm having it...
I saw my chemo onco, my bloodwork is good and they don't have an HPV result yet but she is banking on it being positive.
Anyway, they can't decide for me because the numbers are good for me to have it, so the decision rests with me.
If my bloodwork changes and is worse next Tues, they will reduce the Cisplatin dose. If still good, I get the same full dose on Thurs.
No regrets, sick, hopefully not too sick that I need to be hospitalized, and I'll get it with 2 days of rads left.
The next day's rad will be fine Fri, then the w/e, then on Monday, if I'm not ill, my last rad, Dec 12, yay!
Wish me luck on Cisplatin #3, I'll need it :-)0 -
Hi RogerRogerRN43 said:I'm having it...
I saw my chemo onco, my bloodwork is good and they don't have an HPV result yet but she is banking on it being positive.
Anyway, they can't decide for me because the numbers are good for me to have it, so the decision rests with me.
If my bloodwork changes and is worse next Tues, they will reduce the Cisplatin dose. If still good, I get the same full dose on Thurs.
No regrets, sick, hopefully not too sick that I need to be hospitalized, and I'll get it with 2 days of rads left.
The next day's rad will be fine Fri, then the w/e, then on Monday, if I'm not ill, my last rad, Dec 12, yay!
Wish me luck on Cisplatin #3, I'll need it :-)
We are here with you all the way my friend.
Wishing the best
Hondo0 -
You Can.....RogerRN43 said:I'm having it...
I saw my chemo onco, my bloodwork is good and they don't have an HPV result yet but she is banking on it being positive.
Anyway, they can't decide for me because the numbers are good for me to have it, so the decision rests with me.
If my bloodwork changes and is worse next Tues, they will reduce the Cisplatin dose. If still good, I get the same full dose on Thurs.
No regrets, sick, hopefully not too sick that I need to be hospitalized, and I'll get it with 2 days of rads left.
The next day's rad will be fine Fri, then the w/e, then on Monday, if I'm not ill, my last rad, Dec 12, yay!
Wish me luck on Cisplatin #3, I'll need it :-)
You can handle it buddy....last chemo, last rads....last stone in the road.
Thoughts and Prayers,
John0 -
Good LuckRogerRN43 said:I'm having it...
I saw my chemo onco, my bloodwork is good and they don't have an HPV result yet but she is banking on it being positive.
Anyway, they can't decide for me because the numbers are good for me to have it, so the decision rests with me.
If my bloodwork changes and is worse next Tues, they will reduce the Cisplatin dose. If still good, I get the same full dose on Thurs.
No regrets, sick, hopefully not too sick that I need to be hospitalized, and I'll get it with 2 days of rads left.
The next day's rad will be fine Fri, then the w/e, then on Monday, if I'm not ill, my last rad, Dec 12, yay!
Wish me luck on Cisplatin #3, I'll need it :-)
I had my cisplatin dosage reduced, very little, after the first cisplatin/taxotore/5FU round sent me to the hospital with a low wbc, 1 1/2 days on antibiotics, my levels were up again to the point of not having to delay any further treatments. I also had neulasta injection the following monday after the 5fu pump was disconnected. My chemo onco told me from the get go that this was the mother of all treatments, she also didn't sugar coat the possible side effects, so I was prepared for them, luckily they didn't appear.
Blessings and light ...and congrats on coming to the end of your rads.
Linda0
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