| | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | OP  "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Hi everybody. Just checking in. I'm half-way done my post-chemo radiotherapy treatments and so far am having little if any side-effects! Ironically my head hair is thinning now, which is a late-onset side effect of the chemo, but so far it looks 'ok'. If it thins too much more I may just shave my head, which I've always wanted to try anyway but have never been brave enough. At least, this is what I'm telling myself!
Still working, resumed bicycle commuting last week. Can tell I've been off the bike for a month, but otherwise that goes well, and now that Spring has finally (finally!) appeared in London, it's far preferred to the Tube and bus network.
Met with my Oncologist last week so my parents could meet him, and he said he was 'extremely' happy with how my tumour has responded to the chemo, and clarified that the tumour is not in the airways part of my lung at all, but instead is next to the lung and had pressed the lung over, but the lung will expand like a balloon back into that space as the tumour shrinks. This had not been quite clear to me until he described it to my parents. I may have some collateral irritation in my lung where by necessity the radiation passes in/out, but this should heal up. They are hitting me from three angles to minimise the collateral damage, of course.
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.
| | | | | Joined: Feb 2007 Posts: 176 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Feb 2007 Posts: 176 | Seth,
Finally saw this. I've been following you on another site but didn't pick this up. My thoughts and prayers are with you.
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.
| | | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,260 Likes: 3 |
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: Apr 2013 Posts: 76 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2013 Posts: 76 | Hi Seth--I may be double emailing you--still getting used to this site. Apologize if I am. It seems your case is so much like my husband's (right down to the silver lining of never having had the nerve-- but always wanting to-- shave his head). I am glad to hear your treatments are progressing. Is the radiation the same type that was used on your initial go-around? Or is it the more directed (cyberknife?) type? We are new to the discovery of the metastasis to the lung's hilar lymph node. And still reeling. Met is still small, so docs advise waiting for it to progress to "measurable" disease before treating it. Getting second opinions shortly. Thank you for sharing your experience on this site. It's great to know you're riding your bike again (in London traffic??!!). Finally, thanks to your forebears for the phrase Keep Calm and Carry On. I have it posted in several prominent places in my life.
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: Oct 2012 Posts: 15 Member | | Member
Joined: Oct 2012 Posts: 15 | Hi Mary,
I'm not a doctor but waiting for cancer to grow bigger before treating it, goes against everything I have heard of. Please get another opinion ASAP!!
Good luck.
Amber
Caregiver to 63 yr HPV+, BOT SCC, T2-3N2cM0,
Dx 9/6/12, Tx 10/12- 12/12,
Cisplatin x3, 35 x IMRT;
PET 12/15/12 Clean
PET 3/14/13 Clean
PET 9/17/13 removal of lymph node mediastinum bx HPV+,
10/13/13 SBRT 5x area around node
PET 1/6/14 -clean
CT 6/14 -suspicious
CT 11/14 - 5 spots confirmed
12/14- chemo
CT 1/15 -stable
CT 3/15 -chemo ended; mixed results. Some spots better but new one appeared also in left pleura
| | | | | Joined: Jun 2010 Posts: 153 "OCF Canuck, across the pond" Senior Member (100+ posts) | | OP "OCF Canuck, across the pond" Senior Member (100+ posts)
Joined: Jun 2010 Posts: 153 | Hi everybody,
I'm doing generally quite well now, three weeks post final radiation treatment. I *have* developed a pain in my chest, sort of under the tips of my ribs on the treatment side, which spikes when I take a deep breath or squeeze all the air *out* of my lungs, but my Oncologist isn't too concerned, says this could be any sort of post radiation irritation, and my own research online points to similar possible side-effects up to 6 months following radiation. So far it's only a problem while I'm bicycle commuting, when I would normally take deeper breaths.
But, I'm back to work full time and back to eating whatever I fancy. In fact, it's surprising to me that it's only been three weeks since my last radiotherapy treatment. I need to occasionally remind myself what I've been through, and that I'm almost certainly still recovering.
Summer has finally come to London, and it's now time to go for a walk along the Thames with my wife.
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.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Congrats on finishing round 2! It sounds like you are doing fantastic, working, biking to work and taking walks with your wife. Hope the chest pain goes away quickly. Best wishes with your continued recovery!!!
ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive  | | | | | Joined: Jul 2012 Posts: 3,267 Likes: 4 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jul 2012 Posts: 3,267 Likes: 4 | Congratulations on completion. I had similar occasional chest/ lung pains on my surgical side for a while. I had a clear PET scan, x-rays, CT in other follow ups, not related, and were clear too, and pain eventually went away. I thought it was from surgery, anesthesia. Good luck.
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
| | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | You don't mention the recent radiation in your Signature Line?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Wow! You have rocked this thing all along! I cannot say that I have ever seen someone do so well throughout treatment! I am completely amazed and so happy for you!
I think a walk with your love along the Thames is long overdue <3.
Enjoy your summer!
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!
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