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Stily1 #164279 04-23-2013 11:17 PM
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Hi Seth, glad to hear all is going well and you are feeling pretty good.
Fingers crossed for you on Thursday and hoping for great results.
Take care, Tammy


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 #164294 04-24-2013 09:26 AM
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So glad to hear you are doing well keep us apprised of what is happening we are here for you... best of luck and continue to feel good! ;o)


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 #164364 04-26-2013 08:48 PM
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Hello, Seth.

I am just catching this thread and all sounds very well and hopeful for a cure!

After reading your story, it makes me wonder if my second cancer was indeed metastatic and not a new primary. I, too, do not fit into any statistical/prognostic category, so the same goes for me with careful watching.

I have been selected to participate in a study for rare cancers at Mass General. I'm definitely doing it! Anything to help find new treatments and move toward a cure of this disease!

Best wishes for your continued good results. I hope that your scan shows that the treatment is working and that the follow up radiation will take care of the rest. Let's be done with it once and for all!

Be well,
Kerri


37 y/o fem at Dx (23 wks preg @ dx on 3/16/11)
SCC L oral tongue (no risk factors)
L partial gloss/MND 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.
44 years old now...I wasn't sure I would make it! Hoping for 40 more!
Stily1 #164366 04-26-2013 09:35 PM
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Hi, glad to see you posting again. I can't believe how when I was gone on the 2 vacations I come back and there are so many new members with cancer.

I see you mentioned having problems with breathing during treatment. Did they ever check you for sleep apnea. I know Jeff's came on as a result of the swelling and even though the swelling is gone he still sleeps with the cervical collar around his neck and eventually puts the CPAP machine on. At least now he often waits so we can at least cuddle for awhile till I usually wake him up and tell him he's not breathing at put the machine on. I really resented the machine in the beginning, it totally ruined going to bed together at night. Do you ever feel like you are not breathing exactly right even now?

I see you are in a study for rare cancer. What type do you have that is rare. Jeff's is so rare less than 50 cases. I called out to Sloan Kettering in NY this week just trying to get some info on Jeff's cancer since I know they have treated 2 people with it that didn't make it. Was wondering about the chemo after rads to help reoccurrence.

Today it actually was in the 60's, we had a low of 10 this week and still have lots of snow. 70 for tomorrow so hopefully more melts. I see we had a drift 2 feet deep on the side of the garage still. Such a crazy spring, I want summer and am anxious to get my garden in.

How are you really feeling? Did this second time kick you more? Hope all continues to improve, you are so young to be dealing with it. Take care. Terri


Husband diagnosed Oct '11 Cancer of the vocal cord Nov '11 removed right vocal cord. Neck Dissection, cancer in one node, .2, very small & contained) Jan '12 Radiation and Cisplatin, 6 doses. June '12 & Dec '12 clear Pet scan. April '13 Celebrating 1 year cancer free since treatment ended.
Stily1 #164367 04-26-2013 11:30 PM
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Hello! My CT scan showed strong good effect, significant shrinkage of my tumour in the inside edge of my left lung, and no other tumours visible. My Oncologist is very pleased with this result and confirmed treatment 'Plan A' of a third chemo, followed by radiation to stamp it out.

In fact I'm in my hospital room at the Royal Marsden having had my dose of Cisplatin last night and they've now just started the 5FU which will be administered for four days constant slow drip.

Kerri, in my case they were able to test a sample of my new tumour and confirm it's the same cancer having re-appeared in a new place. They took a needle biopsy through my ribs and lung - that was a new experience! But not terrible.

Terrib, I think you may have confused me for someone else? In fact my cancer is bog standard metastatic recurrence of the Squamous Cell Carcinoma I had in my tonsil, I had a psychotic reaction to something at the end of my treatment, could not swallow, but don't recall trouble breathing. And I'm not part of any trials or study; just going through the standard treatment for this, granted rare, metastatic recurrence. Of course they'll learn something, but my path at this point is not too esoteric.

So far this morning I feel pretty ok. I expect this to change as these drugs do their work with the unfortunate collateral damage, but oh well!

Cheers,

-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 #164378 04-27-2013 07:36 AM
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That is soo awesome prayers, and fingers crossed for you. Keep on trucking.


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 #164386 04-27-2013 03:22 PM
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Well, that's very good news. You seem to be holding up well too.
It's all about moving forward with treatments. Coping the best we can. Getting that good outcome/response.
Thinking of you and looking forward to your updates.
Tammy


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 #164392 04-28-2013 03:45 AM
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36 hours post Cisplatin, seems maybe the worst of those side effects are past? Cautiously feeling like this third and, hopefully final, round of chemo is going better than the prior two. Might be too early to say that, as they warned me some side effects may be instead cumulative. Only time will tell. But as of this Sunday morning I've managed a light breakfast of toast, tea and cereal and feel 'ok'. No return of heartburn yet, touch of nausea yesterday afternoon quickly medicated.

Then, in three weeks I'll start 4 or 6 weeks of radiation treatments.

On ward through the fog!


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 #164398 04-28-2013 12:49 PM
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Posts: 383
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Great attitude Seth! Prayers and Best Wishes for you. Eager to hear of continued improvement!


SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!

**** PASSED AWAY 10/8/16 ****

Stily1 #164404 04-28-2013 09:42 PM
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Thanks Steve and everybody. I'm about half way through what should be my last chemo and am at the 'dodgy tummy stage'. Not quite nausea, no heartburn at this point, just low-grade belly ache that doesn't leave me wanting to do much other than try to sleep, which of course I can only do so long. Unpleasant, but no drama.

I should be done by early Wednesday morning (London time). I keep reminding myself that within a few days of getting off the drip each time so far I've felt better than I thought I would.

-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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