| | Joined: Jan 2011 Posts: 168 Senior Member (100+ posts) | OP  Senior Member (100+ posts)
Joined: Jan 2011 Posts: 168 | Last year at this time, when I was enduring the worst of my treatment, I vowed that I would continue to go on this site and post whenever I could because I got so much help from others, especially from those who had made it to the other side. During those last days of treatment and into the first few weeks of recovery I was convinced that I wasn't going to ever see that other side. I got so much strength and hope from people who had been there. Since summer, I have not been very faithful to my pledge to stay in touch, but I am trying. Today I had my monthly laryngoscopy and all is well. Now that I have begun year two, I will have them every other month. A few weeks ago, I had my first annual CT Scan and that is clear. Blood work has shown hypothyroidism, but I am on a med for that and it is a predictable result of radiation. Why am I posting? To show that the other side exists. No matter how hard treatment is, you will get through it. Someone here told me to have patience. Oh how that was hard to hear but the best advice I got. If you are still in treatment, have patience; if you have begun recovery; have patience. Someone here said that he, after half a dozen years, barely remember that he went through this horrible disease. I am not there yet. Recovery was slow for me, painfully (literally) slow for me. My mouth is still always dry; eating is still hard if not soups and stews and ice cream; my neck is tender and my throat is still full of scar tissue and, for lack of a better word, gunk. Overall, though, life on the other side is good. I wish you all, no matter where you are today with your struggles, an abundance of blessings. -Michelle
SCC left tonsil, stage IV, HPV+, metastatic to one lymph node. Biopsy 12/23/10; tonsillectomy 1/13/11; DX 1/25/11; Peg in 1/28/11. Peg out 6/29. TX 1/31/11-3/21/11: 35 IMRT plus 3 Cisplatin. Pet-Scan 6/20/11 = CLEAR! Three years out, learning to live with the long-term side effects of radiation while reminding myself to feel blessed.
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Great post Michelle, thanks for sharing your experience and hope!
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Jun 2011 Posts: 188 |
Caco
CG to Dad. Biopsy 5/11 non-op, SCC stage IV poorly dif at base of tongue with nodes, quit smoking in '85, ChemoRad began 8/2/11 ended 9/22/11 with NED. Distant mets 11/11, clinical trials. War raging on!
| | | | | 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 | Very nice post, Michelle! Its very nice of you to remember to stop by and give others hope. I know recovery can seem like it takes forever and the improvements are not fast enough. Your post shows that even with some limitations, life after cancer can be good.
Thanks!
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hugs girl despite it all you are doing great, and most importantly - HERE!! I'm on your heals. I started rads March 17 - finished May 4th last year... ;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
| | | | | Joined: Aug 2011 Posts: 596 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Aug 2011 Posts: 596 | Congrats, Michelle!
Thank you for sharing your view from the other side of the mountain. I think it's so important for others, especially new members, that you will get there eventually!
I am from Tewksbury, MA. May I ask where you had your treatment? I had mine at Mass Eye & Ear and Mass General.
So happy for you!
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!
| | | | | Joined: Jul 2009 Posts: 1,409 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2009 Posts: 1,409 | Terrific, Michelle. I could almost have written it, as our experiences have been similar. So glad to hear you're thriving!
David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 15 years all clear in 6/24 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
| | | | | Joined: Jul 2011 Posts: 25 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Jul 2011 Posts: 25 | I think the main theme of Michelle's comment is this: You WILL get through it. I had my hell last year starting about now and spent the rest of spring and all of summer wanting to die. I just couldn't stand the pain and misery I was experiencing. Yet, each day I kept trying to save myself. In my blog (benscancerfight.blogspot.com) I remember saying that my friends and family cared more about me than I did. It was true. Yet, here I am almost a year from the end of treatment doing pretty well. I have no idea if the cancer will return or not but I live today for today and enjoy the life I have now. For everyone going through this: just hang in there. Things will be better.
Last edited by bbagby; 04-13-2012 04:35 PM.
Diagnosed in March 2011. Treatment ended May 28, 2011. Back of tongue cancer with one lymph node(stage 4). Feeding tube 5 - 2011, to 9 - 2011. Some saliva and taste. Eating most foods; meat, fish and dry foods not so well. Swallowing pretty normal otherwise. Doing well now. The future? Who knows.
| | | | | Joined: Dec 2009 Posts: 63 "OCF Down Under" Supporting Member (50+ posts) | | "OCF Down Under" Supporting Member (50+ posts)
Joined: Dec 2009 Posts: 63 |
stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
| | | | | Joined: May 2005 Posts: 497 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: May 2005 Posts: 497 | How wonderful that you are doing well after 2 years. I suffered from dry mouth for a few years and it finally eased up. There is some kind of toothpaste, mouthwash and throat spray that helps that. Ask your ENT if you can use anything.
meanwhile enjoy each day and congratulations!
Blessings
barb~
[i]"The artist, a traveler on this earth, leaves behind imperishable traces of his being." -Fran
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