| Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | can definitely state that my dad didn't get a tailored program for his mets...he got the trial that's aimed at stopping/shrinking mets. and that trial recommendation was made BEFORE his biopsy, they of course waited until it was confirmed OC mets (ruling out other cancers) before he started the trial. great oncologist and CCC, but that's what got me looking and preparing for plan B to begin with, in the event the trial doesn't work. i don't want to link details from here as we're asked not to, but happy to pm.
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | You might get a "blanket approach" at your local hospital based on a 20 year old treatment protocol. This is why we always recommend getting treatment at a comprehensive cancer center, where a coordinated medical team will put together a treatment plan based on the most recent knowledge and clinical trials. The NCCN oncology practice guidelines are just that- guidelines. A knowledgeable medical team will design a unique treatment protocol for the patient.
All diseases are hit and miss, in reality, since we all respond differently to treatment, medications, etc. Watch a few episodes of "House" and you will get a glimpse of the process of elimination (exaggerated for dramatic effect of course). Add genetic propensity, health habits, etc., as Cheryl previously mentioned.
Caco - no need to PM me, I think this would be of interest to all here.
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
| | | | Joined: Jul 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | I keep an eye on Science Daily: it aggregates research from a fairly wide variety of sources. Progress is being made on personalized treatment, but it's an incredibly complex subject. On an individual level, a disease is hit and miss - but as knowledge increases, the PATTERN of disease (and patient genetics, health, etc.) that will respond well to a particular treatment becomes better defined.
A note on the NCCN guessline - if you read them closely, you will see that there are varying levels of agreement on the protocol options.
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | googling "some success seen with personalized cancer treatment" will take you to a reuter's article. i've been talking with people who have had this type of testing, the common denominator being that they are alive.
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | I seriously say go for it.  it cannot hurt him if there is no interruption in his regular treatment (though surgery - biopsy has its own risks) - and it may help him. If all hey are offering is palliative care - do it.  good 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
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | there is a treatment interruption (more of a delay than an interruption) in that the biopsy needs to be done two weeks after the end of a treatment phase. for palliative treatment this means waiting until the current treatment phase is no longer working/effective. so his biopsy would 1) need to be done 2 weeks after a completed treatment, and 2) be cultured withing 24 hours of the actual biopsy.
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,264 Likes: 5 | Okay that sucks since it would be good for them to do it now while it's localized... Hard decision. Hugs! And good 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
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | How often are they going to monitor the success of the palliative treatments? If it doesn't look like it's working, can you take two weeks off and then opt for the personalized treatment? It would be hard to opt for palliation if there's a chance for something better.
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | spot on sandy...that's what i'm thinking. his first phase ends next week, scans in jan. want to get through holidays before i drop this on him.
Caco CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | Joined: Jan 2011 Posts: 571 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jan 2011 Posts: 571 | I hope he gets the treatment he needs in order to be cancer free.
Last year, when we got the diagnosis at the beginning of December and staging a couple of days before Christmas, I was determined to put all things cancer into a box and store it on a shelf until after January 1st. It made for a nicer holiday.
I figured that wringing my hands and obsessively researching SCC-HN wasn't going to do any of us any good until we went in for the next item on the cancer Honey-Do List after the first of the year. I was determined to make it the very best holiday for J and the boys...and that meant that cancer needed to become invisible and silent. I hope you can get a reprieve from having to deal with it, at least for now, and just enjoy your holidays.
I hope you and your entire family have a wonderful Christmas filled with great fun, lots of laughs and abundant love as well as lots of things to add to your mental scrapbook.
Sending hugs to you and Pop.
Sandy xoxox
Ex-spouse MISDIAGNOSED with SCC-HN IVa 12/10. Tonsils out 1/11. 4 teeth out 2/11. TX Erbitux x2, IMRT x2 2/11. 2nd opinion-benign BCC-NOT CANCER 3/11. TX stopped 3/11. New doctors 4/11. ENT agrees with 2nd opinion 5/11. ENT scoped him-all clear 7/11. Ordered MRI anyway. MRI 8/22/11 Result-all clear.
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