Previous Thread
Next Thread
Print Thread
Page 12 of 16 1 2 10 11 12 13 14 15 16
Stily1 #178746 03-27-2014 06:47 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
Wish I could be in the Hebrides too, I'm so envious. That aside, glad the chest cold has been dealt with. Take care, Seth.


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 #178749 03-27-2014 07:27 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
Live your life. Give cancer it's due diligence but do not allow it to steal one moment of your fun... hugs and have fun in your travels.


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 #179615 04-26-2014 12:36 AM
Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
Senior Member (100+ posts)
OP Offline
"OCF Canuck, across the pond"
Senior Member (100+ posts)

Joined: Jun 2010
Posts: 153
Time for a (longwinded) update!

Thursday I started Cycle 4 on GDC-0980, all of my various blood-work levels are good so they've authorised me to continue and issued me my next month's supply.

My white blood cell count is slightly high, but has been throughout this trial and is probably related to prior chemotherapy. I�m slightly anaemic, but only slightly and they are not concerned. My potassium, which was slightly low two weeks ago, has rebounded. Basically no issues.

I feel generally the same, so 'stable'. No scans today (other than an ECG, which was fine) so won't know more until two weeks from now when I do have another CT scan.

I asked a few questions and had the following answers:

1) By what mechanism does this drug cause weight loss? They don't really know - it's more of a case that this has been observed in some patients taking the drug. It was noted that metastatic cancer in and of itself can cause weight loss. It's also possible that because this drug works by inhibiting certain biological 'channels' that this cancer relies on, this same effect might block my ability to uptake/process glucose, which is why they monitor my blood sugar, in case of elevation. So far this has not happened to me. So if any weight loss is even caused by this drug, it�s at a cellular level and has nothing to do with the bugs in my gut (as in the use of antibiotics that kill off your good bugs).

2) Why must I fast before and after I take this drug? Simply because they haven�t done the food-interaction studies with this drug and don�t know what effect this might have.

3) I asked about my minor non-productive �asthmatic cough� and was told that this is a common inflammatory reaction to the kind/location of cancer I have. So, it�s just the new me.

4) I asked about my sense that while bicycling to work I�m not able to process quite as much air, and was reminded that while this drug appears to have halted the cancer, it remains true that my left lung is effectively not as large as it was, due to �pleural effusion� at the base - that�s fluid accumulation and cancer in general. One�s lung usually has this long pointy bit that extends down the (I think) outside of your torso, and mine�s sort of squeezed off. So likely this sense of reduced athletic capacity is simply down to this, my lung is not as voluminous as it once was.

5) Last weekend while motorcycling in inappropriate clothing I got very chilled and had a first-time episode of Renaud�s Syndrome, where the blood vessels in your fingers spasm and squeeze the blood out of your fingers in response to vibration, turning them white! They don�t know if this could be related to this drug, but said as a one-time occurrence with very good reason (chilled on a vibrating motorcycle) in bears monitoring but nothing more.

6) Lastly, I had heard that another patient had been on this drug for three years but then had to end the trial, and I asked what happened. In that patient�s case the cancer changed and the drug stopped working. Some people never see any benefit, or only a very short-lived benefit. In my case this is the start of month 4 and it appears to be working. There are no guarantees in any of this.

Onward Through the Fog!

Hugs,

-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.
Stily1 #179622 04-26-2014 06:31 AM
Joined: Apr 2013
Posts: 319
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Apr 2013
Posts: 319
Hi Seth,

Not too much here that I can respond to with any authority, but I can say this; your weight loss is not necessarily related to whatever chemo you're getting.

The body's metabolism goes into a super-secret-it's-so-high gear, and burns energy at a rate never seen in ordinary life, when it is healing from MAJOR trauma (of which cancer and cancer-treatment both qualify).

When I was shot up, I went from 236 to 145; and when I had my right chest crushed (flail chest), I went from 216 to 154. When I got Cisplatin and radiation in my initial cancer treatments, I went from 192 to 154. Finally, just recently this year, I had my liver packed with radioactive SIRIspheres and just this month, 3 weeks of Beam radiation.

With SIRIspheres, I went from 165 to 154 (haven't gotten back to 165 yet) and with the beam radiation, from 160 to 155.

I have had NO chemo during these later radiation treatments (beyond the initial treatments.)

So as I said, simply surviving trauma is intensely energy intensive, and failing to consume adequate nutrition during that period; the body will consume itself.


My intro: http://oralcancersupport.org/forums/ubbt...3644#Post163644

09/09 - Dx OC Stg IV
10/09 - Chemo/3 Cisplatin, 40 rad
11/09 - PET CLEAN
07/11 - Dx Stage IV C. (Liver)
06/12 - PET CLEAN
09/12 - PET Dist Met (Liver)
04/13 - PET CLEAN
06/13 - PET Dist Met (Liver + 1 lymph node)
10/13 - PET - Xeloda ineffective
11/13 - Liver packed w/ SIRI-Spheres
02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node
03/15 - Begin 15 Rads
03/24 - Final Rad! Woot!
7/27/14 Bart passed away. RIP!
Stily1 #179623 04-26-2014 06:39 AM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
Likes: 1
Thanks for the update, and details Seth. Seems like you're holding your own, especially bicycling to work, and happy that this trial is working, minus some side effects.


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 #179627 04-26-2014 09:53 AM
Joined: Oct 2012
Posts: 1,275
Likes: 7
Assistant Admin
Patient Advocate (1000+ posts)
Offline
Assistant Admin
Patient Advocate (1000+ posts)

Joined: Oct 2012
Posts: 1,275
Likes: 7
You've asked some really good questions. Thank you for sharing. It is of great interest to me how you react to the trial drug as John is in a trial too.


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 #179631 04-26-2014 01:25 PM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Joined: Dec 2010
Posts: 5,260
Likes: 3
So glad you're doing so well... smile


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 #179632 04-26-2014 02:48 PM
Joined: Jun 2010
Posts: 153
Stily1 Offline OP
"OCF Canuck, across the pond"
Senior Member (100+ posts)
OP Offline
"OCF Canuck, across the pond"
Senior Member (100+ posts)

Joined: Jun 2010
Posts: 153
Being in the 'trial environment' has been very interesting. Clearly there are a lot of very different compounds and approaches being studied right now, which is exciting. It's also pretty clear they still have a lot to learn about cancer and how it all works. It seems they are realising every cancer, and every person, are different. This is only my own observation based on being immersed in the study environment, but there you have it for what it's worth.

But many of these have unworkable bad side effects for a lot of people. They're quite happy with me as I'm doing 'so well' on this trial drug.

Here's hoping it lasts!


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 #179664 04-27-2014 07:03 PM
Joined: Feb 2007
Posts: 176
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Feb 2007
Posts: 176
glad to hear you're doing well Seth. Time will buy lots of new and improved treatments. Hang in and enjoy.
all the best
rob


6-05, Left Tonsil-T1N2bM0 stageIVA, chemo(Cisplatin), radiation(6660cGy), neck disection, no PEG. HPV negative. (Doc suspects posit)
3-9-09 last of 30 HBO treatments.
Stily1 #179678 04-28-2014 05:36 AM
Joined: Apr 2013
Posts: 76
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Apr 2013
Posts: 76
Hi Seth, So great to hear all is going well and that you are still biking. Fantastic news! and thanks for your thorough update.

Best,
Mary


Mary
Caregiver to husband, 60
Dx Sept '12 SCC BOT T2N2aMo, Stage IV, HPV+
Oct '12 Sub.Gland transfer
Nov-Dec '12 IMRT x 33 + cisplatin x7
March '13 PET/CT: 2 spots on lungs; (BOT & neck lymphs NED)
April '13 Biopsy: 1 = malignant right hilar lymph (met from HNSCC)p16
9/13: 33 rounds IMRT to lungs; carboplatinx7
CT w/contrast 12/30/13: 2 spots left hilar lymph. biopsy confirms SCC
30 rounds IMRT to left lung; treatment ended 5/29/14
Sept 2014--CT clear; December 2014 CT clear
Page 12 of 16 1 2 10 11 12 13 14 15 16

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,168
Posts196,925
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5