| Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | My husband and I now have 22 out of 35 radiation sessions behind us and two out of three scheduled chemos. He has virtually no taste buds and a horrible mouth but is still swallowing some foods and Ensure. We just ordered Carnation Breakfast VHC thanks to all the recommendations from this forum. Thanks all of you because we never would have known about it. Using the tube to supplement but he is determined to keep swallowing. There is fatigue but no pain killers at all at this time. We do not know what the next 13 treatments and final chemo will bring but I plan to stay home (been working through this) for the first two weeks after treatment. Again I would not have known how important that is unless I had heard from all of you. We do not know what will be next but with all of his determination, I know that he will do his best to "come back." I am a little concerned about what his recovery will be like but that is just me looking too far into the future. I want to thank all of you for the ideas, thoughts, adventures, candidness and inspiration. You are all thoroughly amazing. I get a great deal of strength from you. My husband wants to try to get back to his therapy practice by January. How long has it been for some of you to return to your "life". That will be about 5 months. Does that seem possible? Best to every one of you. I will continue to stay on this forum. It is really a great support
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Nov 2010 Posts: 167 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Nov 2010 Posts: 167 | Hi Ellen - sounds like your husband is doing very well! Good for you both - it's hard work making it through this treatment! As far as return to work goes - it's not an unreasonable goal to be back at work in 5 months. I was fortunate enough to go back to work on a part time basis 6 weeks after treatment - I pushed it a bit because I was going totally stir crazy at home and getting back to work made me feel like I was getting my life back. Keep your mind open though - there were days shortly after treatment that I thought "I could really be working" and other days that I thought about needing to extend my FMLA for another 3 months - it's a bit of a roller-coaster ride with ok days and not so good days - you can just never tell how those days are going to stack up!
You mentioned that he wants to get back to his therapy practice - I know that it was hard for me to talk too much in the first couple months after treatment so he may run into that as an issue - talking a lot was fatiguing, a bit painful and as those 2 problems increased during the day I felt like the clarity of my speech was reduced - frustrating!
Good luck with these last treatments - it's a big deal when you're down to single digits!!
Jennifer (39) 02/10 SCCa Tongue & Base, HPV- 03/10 Partial Glossectomy & ND 11/10 Revision due to additional nodes 12/20-2/2/11 IMRT & concommitant chemo 2/11 PEG in 3/11 PEG out Back at work and feeling good 03/24/11! 12/20/11 - 9 month f/u PET/CT - all clear!
| | | | 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 | Most likely he will be able to return on a part time basis well before that 5 month goal but he will have to take it easy at first. I finished my Tx the end of Aug and I was working within 2 months but owning my own businesses enabled me to work as little or as much as I wanted until I was able to go at it full time. I can't recall the specifics now but at least by Jan I was putting in 12 to 15 hr days just like pre Tx and I didn't miss a beat during that ensuing Tax season.
The thing I quickly grew tired of was EVERY client had to ask me how I was doing and wanted details of my Tx. That really took chunks out of my day. Five years later and I still have clients, and friends for that matter, who ask me "are you doing OK?". Guess it comes with the territory, lol.
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: 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 | Yes but being around to answer those questions 5 years later positively is a pay off!! agreed though - finished my rads may 4 - my first Fu scan is tomorrow!!! That said- I had a meeting the week of June 20th at work that I attended! I was ready to go back and help out with the shut down then (I work as a tech for the school board). Other than the fact that I needed the occasional afternoon nap I felt good. Plus at he time my only real issues were eating and speaking both of which I could do without at work! If mt scan is clear I'm back the first week of sept. Good luck... Hugs!
Last edited by Cheryld; 07-26-2011 08:36 AM.
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: Jun 2009 Posts: 875 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2009 Posts: 875 | Cheryl: Prayers headed your way for your scan tomorrow. I KNOW you'll do good, so let us know with a big smile when you get results. Hugs from julieann
Julieann Nov 2007 SCC on right tonsil following tonsillectomy. Was smoker, QUIT. (Stage IV T2 N2b) 7 weeks radiation one day/wk chemo (carboplatin and 5-FU). Allergic to Taxol; PEG in, lost 30 lbs. TX completed January 2008. PEG out mid- 2008. PET/CT 1/17/2011;2/3/12 NEGATIVE for cancer | | | | 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 | Sounds like your husband is doing very well. If you end up putting the Carnation VHC in the tube, water it down. Its very thick. The thickness might make it easier to drink. When I used it in my tube, I would add 2 cans of water for 3 cans of formula.
When I did my radiation, I returned back to my office job 6 weeks after finishing chemo and radiation. After working half days for about 3 months, I then started working full time. I hope your husband does as well with his recovery after his treatments are finished. Its so hard to plan things while going thru this. Im sure you both are anxious to getting back to your normal routines. Returning to work is a big accomplishment and will make him feel so much better. The 5 month estimate is probably a very conservative guess as to when your husband will be ready to work again. I would say to plan for it to be 5 months but hopefully he will be ready to work again after 2 or 3 months. 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 2011 Posts: 945 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2011 Posts: 945 | Ellen, my husband's work allows him a good deal of flexibility, is computer related, and does not require a lot of talking. He took the chemo day off through most of CRT, but work either a full or part of a day the other four days. He took the last week of CRT off, and half of the next week, then did part time for a bit. He was able to work a full week about a month after treatment ended - I believe that is an unusually quick recovery. Based on my single data point of my husband's recovery, my guess is that a) your husband's ability to talk without noisy interuptions due to mucous-related coughing and gagging (if he has these problems) and b) fatigue - will be the main factors in returning to therapy practice. If your husband can schedule breaks between appointments to get his mouth back in order, and rest up a bit, my opinion is that January would be doable. Best of luck with the remaining treatments!
CG to husband - SCC Tonsil T1N2M0 HPV+ Never Smoker First symptoms 7/2010, DX 12/2010 TX 40 IRMT (1.8 gy) + 10 Cetuximab PET Scans 6/2011 + 3/2012 clear, 5 year physical exam clear; chest CT's clear of cancer. On thyroid pills. Life is good.
| | | | Joined: Jun 2011 Posts: 147 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Jun 2011 Posts: 147 | Thanks everyone, you are all so positive. I think that the advice about taking it gradually makes sense. He is trying to do some things that make him feel productive right now. He putters around the house and drives to his office a couple of day a week just to do paperwork. Tonight was the first night since this all started that he expressed fears about "permanent side effects." He is worried about his salivary glands never coming back and his ability to enjoy food. He has been very positive so far but I know that his throat is starting to hurt more and more and that we will soon need the mouthwash to help numb it a bit. I did not know that you could use the Carnation in the tube. Thank you Christine for the advice. I will remember that. I guess we have to stop doing the "what if's" . The doctor had mentioned a "new Normal" and now for the first time my husband realizes that there really might be a difference in his life after recovery. He said to me "this is serious and I might never be the same." I am so sad for him.
caregiver for husband diagnosed with oral cancer May 2011 after 6 mo node lft side and several in jaw involved Base of Tongue Stage IVA 7 weeks radiation Cisplatin-3 chemos (beginning,middle,end) IntraV administration
| | | | Joined: Jun 2011 Posts: 188 Senior Member (100+ posts) | Senior Member (100+ posts) Joined: Jun 2011 Posts: 188 | ellen, we are at the beginning of this tunnel and i admire you. i have met with several people years out. one is a sports correspondant and the other a rock star...really : ) both talk, sing and yes, carry water bottles. it does come back slowly i'm told, not completely...it's not perfect but better than the alternative. best to you.
Last edited by Caco; 07-26-2011 08:51 PM.
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: Oct 2006 Posts: 383 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Oct 2006 Posts: 383 | Ellen: The new "Normal" will continue to improve. It's strange really, I was told two years out would be about as good as it gets, however I still feel improvements. My surgeon said it's also adaptability, what we don't get back we can "Adapt" to. I probably don't stay hydrated enough but I don't always have a water bottle with me any longer either. Advice; stay positive, experiment (As things constantly change), continue to keep an open mind, learn, grow, laugh, love! We're breathing! Warm Regards, Steve
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 ****
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