Previous Thread
Next Thread
Print Thread
Page 1 of 2 1 2
Joined: Aug 2008
Posts: 48
rubyann Offline OP
Contributing Member (25+ posts)
OP Offline
Contributing Member (25+ posts)

Joined: Aug 2008
Posts: 48
I had my last chemo and radiation treatment, 9 weeks ago today.
I think I had it easy during treatments, I alway feel bad, but didn't get real sick but 3 times. I was able to care for self and husband with little help. drive and shop with help of elec. cart. since treaments, I have been getting weaker. My legs won't hold me up. I itch from head to toe, I can't seen to get warm, I did have some taste, now everything taste like card board. I have ask and all I can get is use a walker, drink more water and put on lots of lotion. one told me it could take a year to get better. I feel better during treament. How bad will it get before it gets better? do you ever get at least some taste back?


cancer surgery on July 7th. 2008, I'm now a survivor. cancer free for now. 39 radiation, and 8 chemo treatments.
Joined: May 2008
Posts: 551
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2008
Posts: 551
Rubyann,

I was about at my worst post-treatment at around 4 - 6 weeks out, but it did get better. The effects of the radiation are cumulative and do worsen after treatment ends. As everyone here has emphasized, every one is different and we all heal at different speeds and the treatment that your body just endured is brutal and harsh. Try to take good care of yourself, eat well, stay hydrated, take vitamins and get enough rest. Your body is going to do what it needs to do, but its gonna do it on its own schedule.

As far as being cold, have you had your thyroid levels checked? Being cold can be a symptom of hypothyroidism, something we're all at risk for.


Stage IV SCC lt lateral tongue, surgery 5/19/08 (partial gloss/upper neck dissection left side/radial free flap reconstruction) IMRT w/weekly Cisplatin & Erbitux 6/30/08, PEG 1 6/12/08 - out 7/14 (in abdominal wall, not stomach), PEG 2 7/23/08 - out 11/20/08, Tx done 8/18/08
Second SCC tumor, Stage 1, rt mobile tongue, removed 10/18/2016, right neck dissection 12/9/2016
Third SCC tumor, diagnosed, 4/19/2108, rt submandibular mass, HPV-, IMRT w/ weekly Cisplatin, 5/9 - 6/25/2018, PEG 3 5/31/2018
Joined: May 2007
Posts: 666
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: May 2007
Posts: 666
Recovery is VERY individual. Some luck soul went rock climbing (!!) after the treatment while most are out for a while.
It generally takes a long time to reach the new equilibrium. Taste will return at least to some extent. You need to try and try things again. Re tired: TSH as Margaret pointed out. On the other hand I was also cold for about half a year (also massive loss of body fat and a screwed up metabolism) this is no longer the case.


M




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 7
Hi Ruby:

Hope you feel better soon. It took me a while til I started feeling better after I finished rad/chemo. My taste started returning after about 4 months. Weakness and coldness could be signs of your blood counts being way off. It could be anemia. If you havent had recent bloodwork done, then ask your doc to check it. Try taking some over the counter multi vitamins. I was told take the baby liquid vitamins cuz very high in iron and could put right in the peg tube. Please check in from time to time to let us know how you are doing.


Christine
SCC 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 smile
Joined: Sep 2006
Posts: 8,311
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)
Offline
Senior Patient Advocate
Patient Advocate (old timer, 2000 posts)

Joined: Sep 2006
Posts: 8,311
In addition to everything above I would ask if you have a coating on your tongue? If so it may be Thrush which could explain one or two of your complaints.

I thought I fared better than a lot but even so my taste didn't start to return until my 4th month but really didn't come close to pre Tx normal until 15 months out. I was also as weak as a newborn kitten for at least 4 months post Tx. My thyroid also went bad or at least it was discovered as bad around my 4th month post Tx and I was always cold and then I would wake up in a pool of sweat after sleeping. As Markus, AKA should be Man in Red said, our bodies are so far off our pre Tx norm post Tx that really anything might be screwed up. Simple blood test will answer the thyroid question and if it's gone south a simple pill will take care of it.

OK now the good news!!! All of these initial post Tx problems will most likely be HISTORY in a year or 2 so just hang tough and your body will do the rest.


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 2008
Posts: 716
"Above & Beyond" Member (500+ posts)
Offline
"Above & Beyond" Member (500+ posts)

Joined: Aug 2008
Posts: 716
Ditto with what everyone said...everybody is slightly different. I finished tx Nov 4th and right now I have about 40 or 50% of my taste back. Some food textures make me stay away and I cannot handle anything spicy even black pepper. My energy level is really improving and I feel a lot better even from last week. It takes time.


7-16-08 age 37@Dx, T3N0M0 SCC 4.778cm tumor, left side of oral tongue, non smoker, casual drinker, I am the 4th in my family to have H&N cancer
8-13-08 left neck dissection and 40% of tongue removed, submandibular salivary gland & 14 nodes clean, no chemo, IMRTx35
11-4-08 Recovering & feeling better
Joined: Dec 2008
Posts: 20
Member
Offline
Member

Joined: Dec 2008
Posts: 20
I am seven weeks out IMRT. Everthing tastes like salt. LOTS of salt! Water, my own saliva, I can't tolerate sweets and anything already salted is really bad. I think you guys have talked about the salt taste before and I wondered if this too shall pass?


59 yr old female Rad Tech T2N0M0 lt tonsil
IMRT x 35, no surg, no chemo.
Last treatment 11/18/08. Dealing with L'Hermittes sign presently.
Oct 2010 swollen nodes on rt. side. Biopsy: positive SCC
Jan.20,2011 radical neck dissection(6 hrs.) tonsillectomy on rt. finished 30 treatments Apr.27,2011.
Joined: May 2002
Posts: 2,152
Patient Advocate (old timer, 2000 posts)
Offline
Patient Advocate (old timer, 2000 posts)

Joined: May 2002
Posts: 2,152
I had the salty taste problem also. I think it is because salt is the ONLY taste we had at the time. As other tastes come back the saltiness will die down. It's been to long for me to remember exactly when, but I think it was about 4 months when most of my taste was back except for sweets. I could not tolerate any spice including pepper. Give it time.

Take care,
Eileen


----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
Joined: Jan 2009
Posts: 97
Supporting Member (50+ posts)
Offline
Supporting Member (50+ posts)

Joined: Jan 2009
Posts: 97
Another DITTO,

For a few months everything tasted like sawdust, dirt or camel puke * snickers *

I even looked forward to chemo because I could taste something when they rinsed my port with saline, nummy!
Coming up on 2 years later, I have my salt and pepper shakers handy. My pallet certainly has changed, I am still avoiding breads, dry stuff and hamburger, but I am eating soild foods, even a good tender steak or truly moist roasted chicken for 95% of my nutrition, just different things than I ate before.

Now, I drove my wife NUTS for many months by going to the store and buying lots of different things to try, one or two bites later, I walk away. Poor gal, hating to see food go to waste, it wound up on hers! Except for the chicken liver soup I was making for a few months.

Tinker with food, if it sounds good, go for it! But for that initial experimenting stage, ya might need a big, hungry dog.

[{;-)

Last edited by UncleVern; 01-19-2009 11:46 PM. Reason: typo

ENT conjectures before, no PET approved by HMO. Metastasis 11/06. CT 2/07: mass RT sub-mandibular gland. 7 CM mass/tonsil, base of tongue removed, biopsies 2/07 and 3/07. Vein lost, RT face numb. PET scan: spot in chest, un-investigated. Oral surgery 4/07. 3X Cisplatin and 32X IMRT from 4/07-5/07.
Joined: Mar 2006
Posts: 114
Senior Member (100+ posts)
Offline
Senior Member (100+ posts)

Joined: Mar 2006
Posts: 114
I'm almost 3 years out from initial treatment where I got radiation to the mouth. My tastes have returned except for sweets. Sweets still taste terrible to me. But for a guy who always struggled with his weight, that's not such a bad thing....

Last edited by Steve J.; 01-20-2009 08:10 AM.

Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
Page 1 of 2 1 2

Moderated by  Eva Grayzel 

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
iMarc845, amndcllns01, Jina, VintageMel, rahul320
13,105 Registered Users
Forum Statistics
Forums23
Topics18,170
Posts196,933
Members13,105
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5