#20971 09-18-2006 03:55 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 | Mike, good to hear that the Erbitux isn't that bad for you. We can't make John's rash go away. But he has never had hiccups As to taste issues - it seems to be different for everyone. So keep experimenting and keep eating. It sounds like you are doing well . Amy
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
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#20972 09-18-2006 04:10 PM | Joined: Aug 2006 Posts: 13 Member | OP Member Joined: Aug 2006 Posts: 13 | Amy -
I don't know if your husband is taking anything for the rash but Doxycycline is what helped me. It's an antibiotic. Tends to dry out the skin but that better than the acne.
Follow my experience at http://mycancerfight.blogspot.com/ Diagnosed 6/28/06 with SCC of the base of tongue. T1N2bM0. Modified radical neck dissection 7/19/06. 35 x Tomotherapy IMRT began 8/15/06. 8 x adjuvant Erbitux. UPDATE: 10/4/11 - Checkup on my 5 year anniversary and I am cancer free!
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#20973 09-18-2006 04:16 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 | Thanks, Mike, John took a round of Doxycycline last month- helped a little but not much. The Chemo Doc has reduced his dose down a bit to see if that will help.
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
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#20974 09-19-2006 03:38 AM | Joined: Apr 2004 Posts: 837 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2004 Posts: 837 | Mike,
I think you may get a range of responses about the length of time it takes for taste buds to come back -- it's hard to generalize about what to expect on that score.
In my case, it took many months, and it was a gradual process -- some taste buds returned sooner than others. In the meantime, you can't let your diet be limited to what "tastes good", since virtually nothing does. You need to be sure you're getting a balanced diet with plenty of calories (whether by mouth or by tube) to give your system the best shot at recovery.
Cathy
Tongue SCC (T2M0N0), poorly differentiated, diagnosed 3/89, partial glossectomy and neck dissection 4/89, radiation from early June to late August 1989
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#20975 09-19-2006 05:56 AM | Joined: Apr 2006 Posts: 378 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Apr 2006 Posts: 378 | Hi Mike,
The first thing that came back for Jack was salty foods - he started tasting that around 6 weeks. It took another month for sweet tastes to kick in. At 4 months he was able to taste pretty much everything. Try scrambled eggs and cream cheese. Sounds gross but Jack was able to taste that first.
As Cathy said, it's very hard to generalize but don't be discouraged if it doesn't happen quickly. You've done so well with the treatments that I am really hoping this will go the same way.
Be very careful to monitor your weight after treatment, that's when Jack actually felt worse and you need to maintain nutrition/hydration to recover.
Glad to hear you're doing well. Regards JoAnne
JoAnne - Caregiver to husband, cancer rt. tonsil, mets to soft palate, BOT, 7 lymph nodes - T3N2BM0, stage 4. Robotic assisted surgery, radical neck dissection 2/06; 30 IMTX treatments and 4 cycles of cisplatin completed June 06.
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#20976 09-20-2006 10:15 AM | Joined: Aug 2006 Posts: 13 Member | OP Member Joined: Aug 2006 Posts: 13 | I'm not sure about this but it seems like cases where the primary site is a tonsil, taste seems to come back faster than cases where the primary site is the tongue, especially with IMRT. I guess when the tongue is the primary site being radiated, there is more trauma to the taste buds.
Follow my experience at http://mycancerfight.blogspot.com/ Diagnosed 6/28/06 with SCC of the base of tongue. T1N2bM0. Modified radical neck dissection 7/19/06. 35 x Tomotherapy IMRT began 8/15/06. 8 x adjuvant Erbitux. UPDATE: 10/4/11 - Checkup on my 5 year anniversary and I am cancer free!
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#20977 09-20-2006 12:39 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | Mike, I think you may be correct about that because my tongue was uninvolved and my notes indicate that one month from end of treatment I ate and tasted a whole jelly donut (nutrition not being a priority at that point). I remember eating cases of Campbells chicken noodle soup before that, as I could taste the salt, and the noodles slid down easily. As far as I know, the order in which taste returns is the same for everyone -- salt first, sweet last.
One other suggestion -- I didn't need pain meds until the last week, but I really DID need them then. Stubborn to the end, I thought I could handle it but when I went into shock, was overruled (grin). So be prepared to ask if you need it. | | |
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