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Stily1 #185611 10-01-2014 07:10 AM
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Interesting Cheryl, I'll have to ask about that test! My Oncologist is top of his field in the UK so I would hope he knew of such an option! Whether available here or not.

Update, I went looking and found this relatively recent write up on chemosensitivity essays which suggests it's pretty un-proven technology. Do you have better info?

I think there are different kinds of anemia. Mine is low blood cell count, not low iron content of the red blood cells, so I think the only real 'fix' is pumping more blood cells in there, not pumping up the few that are there. That's my impression anyway.

I'm told the transfusion has given me my color back. I just checked, yep, rather red in the face! Well, I'll take that as a good thing.


Last edited by Stily1; 10-01-2014 07:22 AM.

47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
Stily1 #185613 10-01-2014 07:50 AM
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I don't know if there is a clinically accepted test, that I heard of, for chemo sensitivity, reactivity, or assay test for that matter, for each individual patient with SCC in head and neck, yet. Maybe some new targeted therapies, in clinical trials, like yours, test pathways, immune response, oncogenes, and a lot of new ideas are still in laboratories, testing. Even when I had Erbitux, there was no assay test for KRAS mutation like they do for colorectal cancer since it didn't apply for H&N cancer. Let us know if you find out anything.

One of my oncologists periodically tests my CEA, kind of unusual, in my blood work since it can show an increase for a recurrence after treatment, surgery, in the head and neck, but should not be solely relied upon.

As far as anemia, I have it chronically. It could be from bone marrow suppression, not making enough rbc, treatments killing off the RBC faster rate than they can be replaced, which cell life is from 90-120 days, not enough rbc to pick up hemaglobin in the lungs, etc. Transfusions do help QOL, can be life saving, but have risks too, which were outweighed by not doing it. They do mine if below 8, 7, but depends how well I'm functioning, and could be 9. I go by the hemaglobin.

Good luck with everything, and thanks for updating.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185644 10-02-2014 06:26 PM
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Paul, would your anaemia not be related to your renal failure?


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Stily1 #185646 10-02-2014 06:37 PM
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Not really, it didnt cause it, but made worse. I was always anemic or borderline most my life due to an inherent metabolic disorder. My anemia got really bad post treatment, usually hemoglobin is less than 10, and my creatinine was always 1.0 pre-treatment until I had kidney failure as a result of chemo via septic shock, sepsis. It's 2.3 now, new base level, but way down from 7. Although acute kidney failure, CKD, as you probably know, can cause disruption in the erthropotein sp making, so to some extent, yes.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185720 10-07-2014 06:47 AM
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HI - okay the testing I am talking about is now coming more to the forefront. I have a friend who works for a general surgeon but he does a lot of breast cancers - and now - post biopsy they routinely send a section out to california for this testing. It's relatively new but it's a bigger push in the "individualized care" platform that most hospitals are trying to push.

Coco had her dad tested and they recommended the same chemos his oncologist suggested and this held his cancer at bay for quite sometime.

look it up. It might be something you can suggest. While most top drs are aware of what's going on in their fields some of the newer stuff may not have crossed their desks yet.

and some are just downright stodgy... but when it comes to your health you want to be progressive. Hugs and so glad you're feeling better...



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
Stily1 #185725 10-07-2014 09:16 AM
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A while ago (a month or so back) something posted the info about the with the name of the Californian company under the Introduce Yourself thread. I actually went and looked up the company online. When CherylD mentioned this in reply to Seth, I tried looking for the info again but couldn't find it. So, the info is actually on this forum.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185728 10-07-2014 10:40 AM
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This is not the link, but are we talking about a chemo sensitivity test, such as this?

http://www.rationaltherapeutics.com/cancer-testing/index.aspx


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Stily1 #185734 10-07-2014 02:34 PM
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PaulB, I believe so but the name of the company might have been different.


Gloria
She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards

Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016.
Stily1 #185754 10-08-2014 07:56 AM
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Yes... it is one that determines the best type of chemo to use to best tackle your cancer. I too am not sure of the company - I just know that they require a fresh biopsy sample and our local hospital regularly sends the tissue out for sampling to do what they call - personalize it to your cancer.

That said. I think it could also be done in house at some of the big CCCs. Though I imagine were that the case it wouldn't be sent to Cali.

hugs.


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
Stily1 #185805 10-10-2014 12:21 AM
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Posts: 153
Stily1 Offline OP
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Well folks, I'm day 9 post second chemo and while yesterday was pretty ok, the evening saw the diarrhea catch up with me and I'm using Imodium for that and feeling fairly rough.

Rather hoping my Oncologist has something 'better' to suggest following a CT scan within the next ten days. He's mentioned an anti-PD1 trial, but I've gone looking and these don't seem as promising as I might have hoped.

We shall see

-Seth


47 yr old male non-smoker, social drinker, fit. Jan'10, Stg3 rt tonsil+rt neck SCC, HPV+, rad+chmo Vancouver Cda. 2yr clear Apr'12 London UK. Apr'13 mets recur to lymph btw left lung & aorta, 3x Cisplatin+5FUchemo+20 rad, was all clear but 6-mo PET-CT shows mets to pleura around left lung, participating in St 1 trial of GDC-0980. GDC lost effect and ended July'14, bad atrial fibrillation requiring hospitalisation, start more standard chemo 10 Sep 2014.
Sadly has passed away, notified Jan 2015.
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