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#179913 05-05-2014 05:15 PM
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I just wanted to follow up and let you guys know that I started treatment today! I had the big bag of cisplatin and my first Rads. Was pleasantly surprised at how quick the Rads treatment was! Got all the anti nausea meds and feel good for now, although I know it will likely hit me hard soon. What did everyone else experience as far as the first week after cisplat? I'm armed with all the usual nausea meds at home, and I know everyone is different, but was curious for some opinions on what regimen worked best for others? Have a feeling I'll be spending a lot of time on this site in the next couple months :-). I've been thoroughly enjoying Hellion's post -- you are so brave!,,


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
Lbstover #179915 05-05-2014 05:35 PM
Joined: May 2013
Posts: 134
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I felt fantastic Day 1. I felt like I was going to catch a cold on Day 3. Then I got better. Everyone is different but I tolerated the chemo very well.

Stay hydrated and get your calories every day. Stay strong.


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Lbstover #179917 05-05-2014 05:41 PM
Joined: Jan 2013
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great news. one day closer to being done!


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Lbstover #179918 05-05-2014 06:04 PM
Joined: Jul 2012
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The radiation effects usually begin after the 2nd week, 10-14 days of starting treatment, beginning with neck redness, and radiation continue to work several weeks after treatment completion, and have acute, and long term toxicities. Chemo effects start much sooner, usually 3 days after infusion, but cease sooner after treatments are completed. I never had Cisplatin alone, but did with two other chemo's in a high dose induction cocktail, which didn't go well. With radiation, in other subsequent treatments, I believe I had more nausea from pain meds, mucus, canned nutrition from tube feeding, bad taste than anything else. I tried a number of anti-nausea meds through the years.

With Cisplatin, maybe you already know, there are several toxicities that may or may not occur, but if they do to let the staff, oncologist know right away for any neuropathy, hearing, and vision changes, which can become permanent, if not addressed. The creatinine, blood count will be checked weekly in the blood test prior to infusions, and adequate water should be consumed after infusions to flush the kidneys.

The key to getting through treatments are Adequate nutrition, hydration, impeccable oral care, mucocitis, infection, pain, nausea, and vomit control and treatment, neck care, mouth exercises, sleep.

Good luck, and hope this helps.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Lbstover #179947 05-06-2014 11:55 AM
Joined: Dec 2010
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Truthfully rads issues get worse as time goes on... chemo - welll - that depends on the person. I had minor nausea for few days and that was it. I followed the meds exactly as prescribed and think I only used my breakthrough nausea med twice.

SO glad you are doing ok.

take care


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
Lbstover #179978 05-07-2014 08:37 AM
Joined: Jun 2013
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Its day 3 and im doing ok, much better than expected since everything seems to make me nauseated. Ive been able to keep the nausea mostly at bay with decadron, zofran in the day, and ativan at night. I have no appetite but am forcing protein/smoothies down anyway. Hopefully the rest of the week stays as smooth. Im curious, of those of you in treatment now, how many have PEGs? I opted out for reasons Im sure I dont need to explain to this group, but am starting to doubt my decision and was considering getting one placed next week before the hard-core swallowing difficulty sets in. Thoughts? Experiences that may help me decide? Thanks in advance!


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
Lbstover #179979 05-07-2014 09:17 AM
Joined: Jul 2012
Posts: 3,267
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Glad you are holding your own, so far. As far as Peg Tubes, as we formally call it PEG Wars lol. I didn't have one when I did induction chemo in November 2009, but did eventually need after being hospitalized for a long duration from that, and being NPO. I had the peg taken out when I was NED 7 month later, but had a recurrence, and my swallowing was still compromised, and another was suggested to be put in, and did, which I still have, and used during several other treatments through the years, and still lost 40 pounds with my first radiation, and was tube dependent for that, but not any others.

It also depends if the person is already compromised, eating inability, having invasive surgery, is underweight or not going to be able follow the proper nutrition, hydration, and mouth exercise regimine that one may be suggested to have put in before starting treatment. It seems these days it is favored by some doctors, and even patients, to have one put in reactively, than proactively, and some not at all. There are pros and cons to each.

Keep up the good work, Doctor.








10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Lbstover #179984 05-07-2014 03:41 PM
Joined: Jun 2013
Posts: 32
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Thanks, Paul. Of course this afternoon I feel awful and not much is helping. Got my 3rd Rads (25 mins away which sucks) but otherwise it's hard to even get out of bed. I know it's just a bad day, but man this cisplatin is unpleasant. I keep trying to remind myself that the symptoms mean the med is also melting the cancer. Anyway, will hope for a better day tomorrow, and make PEG decision next week. Thanks for the input!


Laurie
42 yo
Pediatrician
No smoke, social drink, HPV neg
May 2013 - SCC Right lateral oral tongue - stage 1 (T1N0M0)
Partial hemiglossectomy and sentinel node bx NEG
NED 5/29/13
3/2014 - Cancer back (never gone) in one right sided cervical node
Modified neck dissection 3/2014, N1 with microscopic ECE,39 nodes neg
30 Rads and 2 cisplatin done June 13!
PET in 3-4 months but no clinical cancer and I'll take it!
Lbstover #179986 05-07-2014 04:46 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
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Ask your doc for an open prescription to get hydrated in the chemo lab. This will help you to feel better.

If your daily intake isnt at least 2500 calories and 48-60 oz of water, then you probably will struggle thru your treatments. Its very early in the game to run into any problems, but everyone is different. Some can have problems from day 1 while some other lucky patients sail right thru without hardly a bump in the road. The common denominator is patients who have it easy are the ones who focused on getting their daily minimums in no matter what. I cant stress this enough... it really will make or break your treatments if you can or cant get the daily minimums in.

As far as the PEG goes, its a very personal decision. Many are pro while others are con and think most can get thru it without one. The PEG wars got pretty ugly with each side being adamant on over-stating why their way was best. Its a tool that will make things easier in many ways if its used correctly, as a supplement to eating/drinking. Whatever is best for you in yoru situation is what we will support you with.

Best wishes!


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
Lbstover #179992 05-07-2014 07:30 PM
Joined: Jul 2009
Posts: 1,406
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Laurie, I didn't have chemo so can only comment on radiation. I elected not to have a PEG and my MO told me she thought I could get through it if I really wanted to. I had my reasons for not wanting to go through another medical procedure at the time.

However after a few weeks I began to wish I'd had the PEG. Swallowing became so fiercely painful due to mouth and throat sores that I almost couldn't do it after about 2-3 weeks, and this was only liquid nutrition and water I"m speaking of. Of course maybe since I've always been prone to canker sores I was more sensitive than some.

So you're right to consider this carefully and get all the advice you can. Oh and like you I had a bit of drive to the ride every day, maybe 40 minutes that I did by myself. And in LA no less. But the end result is worth going through anything.

Hang in there, keep writing, keep eating, keep sleeping!

We're all here for you.


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 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
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