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Joined: Feb 2013
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Hi Everyone,
Jeff had his final radiation treatment yesterday (yay!) and we got a call from the hospital tonight saying his chemo doctor (whom we saw today) wants Jeff scheduled for a CAT scan this Friday!?! He also told us that in a month he wants to start him on 4 more months of chemo no matter what. Even if his scan is clear, just to be safe. We are stunned as we have understood that when radiation was finished chemo was too. Our understanding was that the chemo would make the radiation more effective. It seems like having a CAT scan on the 4th day after radiation would be asking for a false positive and has anybody had that much more chemo after concurrent radiation/chemo? Help!!


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
Joined: Jun 2007
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First, congrats on finishing! Im sure thats a huge relief and then you get that call. I would be concerned too.

Ive seen this done before, having chemo continue after finishing rads/chemo. Its not how most patients are treated but it has been done before with a few members. Im so sorry to hear your husband must still go thru the chemo! Poor guy, it seems like this never ends.

A false positive is on the PET scans. As far as I know CT scans dont have the false positives like PET's do.

Hang in there!





Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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I would ask why the change in protocol. Explain that you are not resistant, but maybe the oncologist has a good reason to suspect residual cancer? I know a PET gives false positives too close to finishing treatment, maybe a CT is less so but still I cannot imagine with all that he's gone through that it would come back clear. Healing, inflammation, infection - all of that show on a CT - and likely all of that would be present post treatment. Plus rads continues working for up to two weeks post treatment.
After my treatment was done the oncologist signed off on me, and left me in the hands of my rads dr. and Surgical oncologist/ENT.

;o) best of luck.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
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Thanks Christine,
It's good to know that it has happened. We were under the impression that the radiation would take another 3 weeks before it does everything it's supposed to so figured it would be at least that long before any scans. Jeff is discouraged, he thought he was through with everything just to find out he has a long way to go.
What do you think about a 2nd opinion? It just seems odd that all this extra chemo is now necessary.


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
Joined: Feb 2013
Posts: 16
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Posts: 16
Sorry Cheryl,
I didn't see your post as I had to leave mid reply to Christine's post for a bit. We did ask the doctor and he said even if his scans are clean you can never be sure that there's not some residual cancer hiding. He claims he planned to do the extra chemo all along, but he did NOT mention it to us. I feel uneasy over all of this. Our insurance has kicked back in at 100% coverage through the end of the year (due to how much out of pocket we've incurred,) but I hate to think that info would have anything to do with this...


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
Joined: Jun 2007
Posts: 10,507
Likes: 7
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I always advise patients to get a second opinion. In this situation though, its kinda like being in the middle of treatments where a second opinion may not be needed right now. I would talk to the doctor again before starting the chemo and ask them about why they want to continue on with chemo. I kinda have a hunch it could be to ensure the radiation gets all the cancer maybe to boost its effectiveness. Im really not sure and just giving you my (un)educated guess. The doc must have some kind of reason to make this change so its best to schedule another appointment and talk it over. I think that will help to ease your mind and make you both feel alot better about this. Ive done this several times, scheduled appointments to discuss a major surgery if I felt I had more concerns.

Radiation will continue to work even after a patient finished their treatments. Thats why a patient will feel so bad and not just bounce right back when treatments end.

Im not surprised Jeff became discouraged with this suggested change. Its a big deal! Poor guy thought he was finished and now he has weeks more to go. That is very disheartening!

Please let us know how you make out if you talk with the doc more about this.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Feb 2013
Posts: 16
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Joined: Feb 2013
Posts: 16
I am kicking myself for not insisting on a 2nd opinion right at the start. Maybe drive to Chicago and find a large center there. The chemo doctor claims that this has been his plan from the start, but it was the 1st time we were informed of it. That's what's upsetting, we were told that his chemo would be given concurrently with the radiation. I even found a document last night from the physicians assistant in Jeff's file (given to us yesterday by our radiation nurse) saying the patient had been informed that he had received his last chemo infusion! Also one of Jeff's chemo nurses told him that sometimes they can go a year or more with no oral cancer patients, then they can get 2 or 3 in a row. I wish I felt more confident in the plan.


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
Joined: May 2010
Posts: 638
klo Offline
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Hi LauriAnn

If this were me, I would be using the 4 month break to go get an opinion/confirmation from another oncologist. However, if this were Alex, I also know I would have the battle Royal on my hands.

Is there a way for you to arrange to send your husband's medical records to another physician at a cancer centre that treats OC every day for an opinion? This can be done in Australia (if one is persistant) but not sure if you can do this in the US?

There are two things I would question:
the validity of doing chemotherapy AFTER chemoradiation
and waiting 4 months to do it.

There are studies that trial chemotherapy after chemoradiation but I am unsure of whether or not the results showed any improvement over chemoradiation alone. There is a school of thought amongst specialists that chemotherapy with 3 agents is useful PRIOR to chemoradiation (Alex and I opted for this despite weak evidence but strong logic at the time) - but even that is still controversial.

There might be something in your husband's medical records that makes him a candidate for the treatment your oncologist is suggesting that we/you are not aware of and which might be explained by a specialist you might approach for a second opinion?


Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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Thanks Klo,
It's only a 1 month break then 4 months of chemo, but hopefully that will still give me time to get a 2nd opinion. I'm waiting for the insurance to get back to me on the 2nd opinion. It would be great if I could just send his medical records like you say works in Australia! I did get the CT scan backed off for 3 weeks so that's something. I am so hoping that these 4 additional months of chemo will be found to be unnecessary!


Laurie- CG to husband Jeff age 50: Stage III floor of mouth/BOT T3N1M0
Dx -1/18/13 Full dental extraction-1/24/13 1st PEG-1/30/13
2nd PEG-2/9/13 Tx start-2/13/13 weekly carboplatin/taxol and IMRT -
3rd PEG-2/15/13
Joined: May 2010
Posts: 638
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)
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Joined: May 2010
Posts: 638
Hi LaurieAnn

So sorry to have misread the gap between chemoradiation and chemo as being 4 months! I must admit though that I am also quite relieved as I WAS actually thinking your oncologist was sadly misinformed and trying to phrase things so as not to alarm you smile

I am still unsure if doing chemo AFTER chemoradiation is a good idea but your oncologist may have some information that I am not privy to that suggests this approach is worthwhile. You might want to tell him that you are trying to understand why Jeff has to go through all this and ask him if he can explain it to you one more time. I would also ask if you could have a copy of the clinical trial results to read (or ask for a copy for a friend who will read them and explain it to you). If he says there are no clinical trials - run, and find that second opinion. Everything I have read (excluding subjective, unscientific or just plain outdated junk publications), concludes post radiation chemotherapy does not improve on chemoradiation alone. HOWEVER, my research is not complete and your oncologist may have read something that supercedes what I have read.

This certainly happened to Alex and I with the notion of induction chemotherapy: Papers published in the late 90s concluded that induction chemo (usually 2 chemo agents containing a *platin and fluoroucil (5FU)) added no benefit to chemoradiation alone. However, once docetaxel was added to regimen, a benefit WAS seen over the old 2 drug standard and is now thought by some to be a worthwhile addition to a chemoradiation regimen in some circumstances. Maybe something new has happened in the area of post radiation chemotherapy??



Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight
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