#60240 01-31-2007 01:37 PM | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | Michael finished his radiation on 12/5/06 and had a great CT scan on 1/23/07. He was being fairly active a couple weeks ago - using the computer (which is upstairs), doing his eBay thing, driving to the post office and even a small amount of grocery shopping (he used to be our main grocery shopper), but for the last week he says he says he feels worse again - very tired, neck and back ache, now his upper arms ache. He still has sleep problems which have been on-going and decreased appetite again - he has lost a couple pounds. His weight had been stable for several weeks. The last couple days he did not even get the newspaper. I seem to have a cold so I suppose it could just be that, or I think he sort of thought that with the great CT scan he would immediately feel
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | |
#60241 01-31-2007 01:49 PM | 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 | Barbara S,
I remember doing well and then not so well. That kind of recovery lasted 2 to 3 months after Tx. I don't see hardly any swings in the way I feel day to day now but I do remember swings early on. It probably affects us all differently but I remember thinking our good I was feeling one day and the next day I would wake up and feel like I had been run over by a truck in my sleep.
Tell Michael to hang in there it will and does get better with time.
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.
| | |
#60242 01-31-2007 02:05 PM | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | David,
Michael said to tell you thank you. He can relate the the feeling he has been run over by a truck thing (although he tells everyone freight train).
Barbara S
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | |
#60243 02-01-2007 05:35 AM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Barbara,
Recovery will take a while. Everyone is different but Michael will have days that are wonderful then some that are not.
I was in bed for at least 2 months after treatment. I would get up for about an hour or so and then back to bed. I just did not have any energy or strength. Around 4 months out I started to feel a little better. Each month that passes he will see little things improve. It just takes time. Our poor body's have been through so much. I am at a year now and doing much better. I still have a few small things I am dealing with.
Make sure he is getting enough nourishment and liquids. May want to add an extra can of Boost or what ever you have. Yes, and stay away from anyone that is sick. He does not need that on top of everything else.
Take care & give it time. Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
| | |
#60244 02-01-2007 04:28 PM | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Nov 2005 Posts: 1,128 | I didn't have ups and downs so much -- They were mainly downs!
I would get up, do my morning stuf, pour my junk down the tube and then lay on the couch reading or sometimes messing with my laptop until it was time to pour more junk and go to bed, where I would read some more and then spend hours trying to get to sleep.
Tell him to treasure the Ups! <grin>
Age 67 1/2 Ventral Tongue SCC T2N0M0G1 10/05 Anterior Tongue SCC T2N0M0G2 6/08 Base of Tongue SCC T2N0M0G2 12/08 Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06 Neck dissection, trach, PEG & forearm free flap (6/08) Total glossectomy, trach, PEG & thigh free flap (12/08) On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | |
#60245 02-01-2007 05:32 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Barbara, Our experience is in agreement with the above posts. I would suggest you have his Docs check thyroid levels too. I assume you all are still keeping track of calories and liquids consumed daily. Is Michael tracking his blood pressure, temp. etc? Is he still on any pain meds? The CT report was great news- but it has nothing to do with how he feels after undergoing his treatment. He is just starting the recovery phase- remind him that he needs lots of rest and good nutrition. Show him Pete's post to Sharlee about the microwaves "still cooking". Amy in the Ozarks
CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease
:
| | |
#60246 02-02-2007 09:17 AM | Joined: Jul 2005 Posts: 207 Platinum Member (200+ posts) | Platinum Member (200+ posts) Joined: Jul 2005 Posts: 207 | Thyroid is very important. They basically fried mine, which was to be expected. I would have a TSH done quickly and see if he needs levethroid. I'm taking 88MG and it helps a lot. I took me over 18 months to not be tires at the end of the day. Tell him to hang in there and get some his vitals and blood work checked.
SCC, base of tongue, 2 lymph nodes, stage 3/4. 35 X's IMRT radiation, chemo: Cisplatin x 2, 5FU x2, & Taxol x2. Hooray, after 3 years I'm in still in remission.
| | |
#60247 02-03-2007 12:59 AM | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | Hi,
Thanks for all the comments and advice. We had talked with his oncologist on 1/23/07 about the possibility of Michael having thyroid problems because he has been losing some hair on his head. He is also constantly cold (although it is 32 outside this AM) and tired, of course. The doctor indicated that he might want to get it tested sometime soon, but did not order it then. Michael saw his ENT on 2/1/07 and we asked for the test, he ordered it and we get the results Monday.
Last night he agreed to try going out to dinner again (we always used to go out on Fridays, but hadn
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | |
#60248 02-03-2007 02:47 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Barbara,
While Michael's rate of recovery may seem slow to him, it sounds as though it's actually much faster than many others here (including myself) experienced. He's certainly eating foods that I couldn't even attempt at that point. On the few occasions when we tried to venture out to eat in the first couple of months after my radiation, I was also very self-conscious about my struggles with food, and I always tried to be sure we had an out-of-the-way table where I wouldn't be noticed too much. Patience is the key word here -- he can expect much more healing than what he has seen in just two months, but it will likely take many more months to get there.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
| | |
#60249 02-03-2007 03:55 AM | Joined: Nov 2006 Posts: 95 Supporting Member (50+ posts) | OP Supporting Member (50+ posts) Joined: Nov 2006 Posts: 95 | Cathy,
I do feel guilty sometimes whining about things and Michael
Barbara S C/G to Michael age 64, stage 1 base of tongue SC cancer and a stage one for a couple lymph nodes, diagnosed 09/12/06, IMRT radiation 10/24/06 to 12/05/06 , last PET / CT scan 11/7/11 - still cancer free!!!
| | |
Forums23 Topics18,195 Posts196,995 Members13,178 | Most Online614 Jul 29th, 2024 | | | |