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#148100 - 04/11/12 03:54 PM Interesting story
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
I guess in some ways this is like preaching to the choir but I had to share, because not everyone here is an old timer.
I have a friend with peritoneal cancer... it's rare and mimics ovarian cancer... usually they don't find out what it really is until the ovaries and uterus are removed, and usually this is late stage.. Standard treatment is chemo, debulking surgery. There is no CURE... as in - once you have it it's life long - managed with chemo, and remission periods - if you find the right chemo.

Initially she was at Trillium... a local cancer hospital. When I first asked... stage etc... she said they didn't want to know... (it was stage 4 - her husband said the first dr. told them that whereas - the second said ignore the stage this is what we are going to do.) This being a rare cancer I would have sought treatment in Toronto (40 minute drive as opposed to a 25 minute one) I suggested this but they seemed content. Last August she was declared cancer free (in remission) She had finished treatments in April her scan was August. Late Sept. she began having the same symptoms. Went back in. The tumor was back. Her original treatment was a combo of cisplatin, and taxol. This time the put her on cisplatin only (NOT SURE WHY...) after her second treatment she had a bad reaction to it. So they were going to put her on a newer drug... doxil. Well this is one of the ones with a 7 month waiting list... so they put her on a 1970's drug.. this made her super sick, and all of her hair fell out again. by dec she was not looking good. I suggested again she call PMH (the top CCC in Canada - in Toronto) They did a few more treatments. Scanned her and the tumor had not only grown but spread. The dr. sent her home to die. Told her on his way out, use your pain meds they'll help and you'll need them (he's an ass) I finally said get your but to PMH (and educate yourself and ask questions!!!)... They know their stuff, as rare as it is they have seen this before more than anyone I would imagine, and they had a treatment protocol in place. PLUS, they had a clinical trial. She finally headed down there in february. They told her taxol was the next step, and that she could go back to trillium, or have it at PMH... I told her to stay there... and then they signed her up for the clinical trial...

She's been there for 8 weeks... chemo (taxol) and trial drug weekly... results... %27 reduction in the tumor.

My point - Her original dr was willing to let her die so when you get a diagnosis of cancer, don't hum and haw, don't drag your feet and think that the local hospital is good enough. If you want to give yourself the best chance, do what you can the first time out, go to the best hospital, the best dr., and do what they say. I know there are quite a few people here who've not been treated at a CCC and are doing fine, but that is often dependent on the individual Dr. it's hit or miss. It's scary to think that this other dr. she had has likely done this to other patients... how many have taken his advice and not sought out another option?

Another interesting aside. I suggested, circumen, & vitamin d - one is found readily in food, the other in the great outdoors... I told her to ask her dr. they said NO... not because of a drug interaction, or that it might interfere with her treatment... but because it might skew the results on the clinical trial... and they wouldn't know if it was the drug or the other things that had made her better...

bizarre.

hugs all.





Edited by Cheryld (04/11/12 04:06 PM)
_________________________
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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#148118 - 04/11/12 09:52 PM Re: Interesting story [Re: Cheryld]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8397
Loc: PA
Sorry to hear about your friend! Your story confirms the need to get treated at the most qualified hospitals. Even though oral cancer is more common, it is still a lesser known disease. Too often people think they know best and dont want to listen to advice. It really could mean the difference between life and death. I wish your friend all the best with her treatments. Hopefully she will continue to make improvements.
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

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#148127 - 04/11/12 11:49 PM Re: Interesting story [Re: ChristineB]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 284
Loc: Kansas
Cheryl,
I always love to read about clinical trials that are working for patients! The rarer the cancer the harder it seems it is to get the best treatment from the outset. Glad you got her to the experts.
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#148180 - 04/13/12 05:00 AM Re: Interesting story [Re: AnneO]
Kerri Offline
"Above & Beyond" Member (500+ posts)

Registered: 08/08/11
Posts: 501
Loc: MA
Thanks for sharing that story, Cheryl. It sounds similar to the cancer that my godmother had twice...retroperitoneal lymphoma(inoperable due to its proximity to her spine and great blood vessels). During her first occurrence, she sought treatment through the local community hospital (suburban Boston). The treatment was chemo and rads, but I don't know specifics.

Well, she had a recurrence 2 years later and decided to seek treatment at Dana Farber in Boston (a CCC). She said that she would never mess around at the community hospitals for a diagnosis of cancer...she'd go straight into Boston. She had to learn the lesson the hard way. We live only minutes from Boston, except for traffic. I think when it comes to your life, traffic and paying for parking are small fees for saving your life. The greater Boston community hospitals (one of which I work for) are opening cancer centers, but I'm sorry...I don't trust them. Why play around when we are so fortunate to live near a city that is considered a medical mecca in the USA?

She is currently in remission, but her last treatment protocol was so horrendous, she swears that if it comes back, she'll refuse treatment. Fingers crossed that it stays at bay for good!
_________________________
37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/SND 3/28/11 @ 25 wks preg
T1-2N0M0; no rads/chemo
Tonsillectomy on 8/6/12 +SCC L tonsil T2-3N1M0 (HPV-)
Treated with 35 rads/7 carbo & taxol (Rx ended 10/31/12), but many hospitalizations d/t complications from rx.
Various scans since rx ended are NED!
Part of genetic study for rare cancers @ MGH.
Just turned 40 and grateful! Hoping for 40 more!

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#149163 - 05/06/12 03:39 AM Re: Interesting story [Re: Kerri]
KenEggman Offline
Contributing Member (25+ posts)

Registered: 04/14/12
Posts: 32
Loc: VA, USA
Cheryl, stating the obvious, but seems your friends doctor was not a very good one, if he could not accept he did not have the knowledge and suggest your friend find a doctor who could help her. Kinda affirms the better than thou attitude some people (not just doctors) get. Shame it is a care provider.


Ken
_________________________
48YO M, hlthy, xsmkr(quit 14yrs ago), mod drinkr
1 mo sore throat w/neck lump 3/12
SCC tonsil, lym nodes
4/12/12 rad tonslctmy, mets in lymph nodes
5/8 PEG, 5/10 PORT 7/3/12 Last Chemo (Cisplatin)| 7/10/12 Last RAD | 9/6/12 MRI=No New Cancer
BSA Scout Ldr w/strng desire to live & beat cancer

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#149167 - 05/06/12 04:11 AM Re: Interesting story [Re: KenEggman]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4907
Loc: Toronto canada
Yup... I think some of it was political, (keep he patient in house you make money... ) - bu I agree! He used my friend is doing much better now.
_________________________
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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