| Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Cheryl--Good find. I never looked at the Survivor forum before. Now I will read it; what a lift.
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
| | | | Joined: Apr 2013 Posts: 76 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Apr 2013 Posts: 76 | Just checking in to follow up on the previous posts. There was another PET and CT done this week. The good news is that the cancer is still confined to the hilar lymph nodes of the left lung. The other areas of concern on January's PET have turned out to be either radiation-related opacity that is now healing--or a slightly cracked rib that is now also healing.
So the two spots on the left side will be treated with 30-some doses of radiation starting on April 15th. Whether to use concurrent chemo to enhance the rads has not yet been determined. If new radiation field has any overlap with previous radiation field, then chemo may not be used, as this would evidently cause too much intensity to tissues that fall into the overlap area. Yesterday was the planning scan, so we should know that info soon.
All in all, the week's news was good. The nodes have increased in size (1.2 to 1.6), but remain stable.
Best to All, 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
| | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | That's good news, Mary. Wishing you luck moving forward.
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. | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Mary,
I hate to say this, but distant mets mean you have entered the great "Whack-a-mole" contest. I've been playing this for the last three years and it's actually not so bad, it just involves a LOT of treatment, mostly chemo of one form or another.
My experience is that it usually take 4 months, and then which ever batch of tumors you are treating is defeated, and you have maybe 4-6 weeks before a PET scan to evaluate your progress and determine that there is NED.
90 days later, you get the first follow-up PET, and new tumors have showed up to join the festivities. No big deal, just "rinse and repeat."
I've found this to be very low-key and nothing like the stress you encounter when you get the news the first time, because by now you are both battle-hardened veterans and know how these things go. Very much UNLIKE your first introduction to the disease. Some caveats and some gratis advice:
When going to an appointment to learn about where you stand, it's important to not attach to the outcome. No matter what you learn, you are learning what is and not what you'd like. Don't think of it as "good news" pr "bad news;" rather think of it as simple information, because that is what it is.
Some times the news IS good news, other times it is not; it's simply the truth.
I know it's a clich�, but the fact is that while it may not always be welcome, the truth is always the truth and it's easiest to deal with when you know it.
Stay on top of your nutrition and hydration. Accept the fact that you will need the same daily MINIMUM water intake of 48 oz for the rest of your life. The water will be crucial to keeping constipation at bay, and equally crucial in carrying the bi-products of the treatment away (toxins and dead cells) before it can make you so nauseated.
(Actually, EVERYBODY should drink 48 Oz water daily, but I digress...)
Join a gym and start to lift weights. You don't have to go for the Muscle Beach look, you are going to build muscle; mass, density and strength.
This will pay off two ways; being fit will help deal with the chemo in ways you can't even imagine (and the odds are hugely in favor of having more chemo along the way,) and being fit will also help deal with the effects of radiation poisoning.
I'm 75 (next month) and my MO told me plainly that he would not normally even consider the latest round of radiation for a man of my age, but was confident that my superb level of fitness made him confident that I would sail through it. And I pretty much have done that.
OK, that's it, thanks for reading. And good luck!!!
Bart
Last edited by Bart; 04-07-2014 02:59 PM.
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - 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!
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