Patient / Survivor Header
Page 1 of 3 1 2 3 >
Topic Options
#146762 - 03/04/12 09:53 PM Treatments beginning. A necessary "evil"
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Well, I sent a few messages as intros. Surgery is complete. It was very difficult. PEG and Trach. But it was only for 8 days so not as long term as the upcoming 7 weeks of radiation. However, healing from the surgery is good. But this Wednesday (3/7/2012) is four weeks out and I will begin radiation and last week Wednesday (2/29/2012) received the initial Erbitux megadosing. Weekly Erbitux begins 3/8/2012). I am not looking forward to it given the many comments here. But I do know what to expect. Expectations, however do not eliminate the fear of the dreaded side effects. Does anyone have advice on dealing with the mouth sores so weight can be maintained? Any other advice on nutrition? (after surgery we made soups and i blended them to liquids and supplemented with homemade smoothies and Boost) Does anyone have successful treatments for the Erbitux rash? Does the product Proactiv work?
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

Top
#146763 - 03/04/12 10:56 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
We didn't do much to the rash until it got dry. Then we used Aquaphor ointment. If you are starting radiation though, be sure NOT to put it on before tx.
Be sure to have the BMX mouthwash and do peroxide/water and salt water rinses a few times a day at different intervals. The BMX helps to do just before you consume anything. It just makes everything numb for a bit.
As for the mouth sores, just watch for thrush. Otherwise ride it out with the BMX, rinses and pain meds.
These are all things we did. I'm sure others have their experiences too!
Sounds like you were amazingly prepared food wise!! Good job. Scrambled eggs sometimes work because they slide down pretty easy. Just try for the 2500 calories a day.
You have a great grasp of what is happening. Keep in touch.
Kathy
_________________________
Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/2012

Top
#146765 - 03/04/12 11:19 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
lam007 Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 12/01/11
Posts: 60
Loc: NSW Australia
Hey Brenda. I'm a Missouri native myself! Weighing in as a caregiver, for what it is worth. My husband didn't have surgery or Erbitux so don't know anything about that. He finished rads Feb 10.

Nourishing yourself IS a high priority. This is really Christine's topic and it comes up with every new person she responds to. And Christine, if you are reading, I don't see evidence that you repeatedly copy and paste -- it is part of your kindness to speak to each of us individually.

Mouth sores are addressed in many places on the boards but some of the themes are using Magic Mouthwash, careful attention to food choices (textures, acidity, altered taste), liberal use of pain meds. Do not, and I repeat DO NOT slack off about oral care, no matter how unpleasant. I'm talking about the antifungal stuff and sodium bicarb rinses. Plus anything else the dentist and radiation oncologist would have recommended to you. Rick was slack and wound up in a world of misery from little old thrush.


Nourishing yourself is going to be hard work. There is simply no way around it. Use your PEG. Rick's has been his best friend and worst enemy but it is literally what keeps him alive. He tried to battle on eating and resisted using the PEG until it was a last resort. Why? (Wife beats head on wall.) Well, PEGs are great but they, or the formulas that go through them, create issues of their own. Indigestion, nausea, etc. But the calories have got to go in some way. Please don't let yourself give in to missing out on calories until you have exhausted ALL options. You get one and only one chance to heal.

Understand that the ground will be shifting under your feet for the next few weeks. What works one day won't the next. Frustrating but true. Still, you can do this. Not a single person on these boards has any Superhuman power and if this collection of ordinary people can do this extraordinary thing, then so can you. And you will. All the best, Brenda N.




_________________________
CG to husband Stage IV SCC left tonsil 11/11. Mets to 7 nodes on left, 2 on right, no distant mets. PEG, 7 weeks radiation and weekly Cisplatin ended Feb 10, 2012. PET 04/12 areas consistent with inflammation, complete response in nodes. Recurrence 09/13 pulmonary lymphatics. Died 22 Oct following an allergic reaction to Erbitux.

Top
#146951 - 03/08/12 07:10 PM Re: Treatments beginning. A necessary "evil" [Re: lam007]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1252
Loc: Los Angeles
Brenda, you might also get a prescription for viscous lidocaine. I recommend that a lot because I found it was the only thing that would numb my mouth enough to allow me to drink anything, even water. There are also other oral rinses, Caphosol is one but as I recall it's very expensive. Baking soda and water are great though.

When the burns on my neck got to a critical stage and Aquafor was only partially helpful I found the best thing was silver sulfadiazine. It's a thick white goop that really did the trick for me.

This is a tough battle but you sound like a real fighter. Keep yourself fed as much as you can. I didn't get a PEG and wish I had, so you're ahead of the game there. And keep drinking tons of water as well.

We're all here for you all the way!
_________________________
David 2
SCC of occult origin 1/09 (age 55)| Stage II TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 5 years all clear in 6/14

Top
#146958 - 03/09/12 12:33 AM Re: Treatments beginning. A necessary "evil" [Re: David2]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8285
Loc: PA
Ask your docs for prescription creams. I have used the silver sulfadiazine too. It works very well as does Beta-Val prescription cream. I would not use Proactive on a chemo type of rash/burn. When using the creams, dab them on and let them soak in. Never rub them into your skin as it is very sensitive right now and even lightly rubbing cream into your skin could irritate or tear your skin.

Check out the list of easy to eat foods. Right now its most important for you to get a minimum of 2500 calories daily with 48 oz of water, more is even better! Do what you have to so you meet this goal every single day. You can not skimp one day and make it up the next. When you are trying to heal from treatments, I would really suggest pushing for even higher calories like 3000 - 3500 a day. Carnation Very High Calorie can be purchased by using the green Amazon box near the top of the main forum page. That helps OCF to continue to operate by giving a small kick back from any Amazon purchase. When I used Carnation VHC, a case was around $46. They are 560 calories per can so it helps to get your daily needs easily. Also get some high protein powder (available any drug store or thru the Amazon link). Add that to your liquids, if using a feeding pump add a can or 2 of water when using thick formula like Carnation VHC. The extra protein is needed to help with your healing, your body has been thru heck and it will take alot of work to bounce back.

List of Easy to Eat Foods

@lam, you are right, I dont cut and paste my replies. I think it would take twice as long to research the question/answers and then move it over to another post.

Best wishes with your continued improvements!


Edited by ChristineB (03/09/12 12:34 AM)
_________________________
Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07, no caregiver
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 extended hospital stay, ICU & burn unit
PICC line w/ IV antibiotics 8 mo
10/4/10, 2/14/11 reconst surg
OC 3 times in 3 years
very happy to be alive smile

Top
#146972 - 03/09/12 04:16 PM Re: Treatments beginning. A necessary "evil" [Re: KP5]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Kathy,
Thank you very much for your reply. I was able to request the BMX mouthwash this week. No mouth sores yet but today is only RAD treatment #3 and I wanted to be prepared. I have also needed Aquaphor already due to the dry skin on my chin. Rash is getting worse but I knew that going in.

Thanks to you and others here, I am able to better know what to expect. While the side-effects cannot be avoided, your responses help tremendously.

Just a thought......Given all the cancer treatment centers, it is almost like "they" know the many environmental, food and other related causes of cancer (not just genetics) but cannot eliminate them without major economic disruption so "they" have resigned themselves to creating "treatment" factories. (Infusion centers, RAD centers, payment centers, etc). Guess the cost of "advancing civilization" requires sacrifice compared to "natural" environments.
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

Top
#146973 - 03/09/12 04:25 PM Re: Treatments beginning. A necessary "evil" [Re: lam007]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Wow! I appreciate you taking time for a response. I am working on nourishment and not looking forward to the next 5 weeks. But one week is already done. Thank God.

From your advice, I started the salt/baking soda rinses and do it every 1-2 hours. The "magic mouthwash" was requested and I will get that prescription filled this weekend.

My world will never be the same! Health is a blessing and I will always be deficient from this point on. Those people complaining about Wall Street need to get a life and be grateful for their health! If they don't like Wall Street, their jobs, their bosses, then just create their own business with their healthy bodies and the freedoms they have! Why complain about others? Use their blessings to produce! Doesn't one of them have the cure for cancer?!!!
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

Top
#146974 - 03/09/12 04:30 PM Re: Treatments beginning. A necessary "evil" [Re: David2]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
David,
Thanks! You gave me another piece of advice I had not previously heard about....silver sulfadiazine. I need to find out more and ensure I have some on hand!

So far, I have received some great hints/advice:
Aquaphor
Silver Sulfadiazine
Instant Breakfast VHC (did not even know they made this)
Mouth rinses
Magic Mouthwash

Plus lots of advice on foods to try especially if one is trying to make it without the PEG.

Thanks to all that actively respond! Your help is appreciated!
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

Top
#146975 - 03/09/12 04:38 PM Re: Treatments beginning. A necessary "evil" [Re: ChristineB]
Brenda N. Offline
Member

Registered: 02/05/12
Posts: 24
Loc: Missouri/Florida
Christine,
Thank you, thank you, thank you! Great information and advice from you and others.

Had not heard of the Carnation VHC before. Ordered it on Sunday and it arrived by Thursday! No mouth sores yet but I am working to keep calories high now in preparation.

Your advice about keeping up rather that catching up is great. Otherwise, I would have had the tendency to do that especially on really bad days. Thanks to your advice, I will be sure to trudge ahead even when I am exhausted and feeling sorry for myself (which causes me to lose my appetite).

I will keep updating on anything new that I find might work for me so I can contribute to and help others as you all have helped me. Thank you!

Still in early stages of treatment but better prepared for the worst thanks to you all on this site....... I actually have hope......
_________________________
BrendaN. 58. Dx2/2/12 Non-smoker Mod drinker Avid exercise- Maui 1/2 marathon1/22/12- Not HPV. Prob cause- 35 yr amalgams-.2/8/2012 SCC, partial glossectomy (right side) SG IVa, 29 nodes, one w/cancer Erbitux 2/29/12 1/week-7 weeks. RAD 3/7/12 M-F for 6wks-clr PET 7/12-2ndclear CT 10/25/12

Top
#146978 - 03/09/12 05:35 PM Re: Treatments beginning. A necessary "evil" [Re: Brenda N.]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 860
Loc: Ohio
Hi, Brenda

On the nutrition side, you may find that making your own protein shakes in your own blender to be more palitable than the canned version. You may be able to do a consult with a nutritionist on this. My husband used the canned products at work, and my shakes at home during the latter half of treatment. Let me know if you want recipe ideas.
Maria


Edited by Maria (03/09/12 05:40 PM)
_________________________
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, 06/2014 physical exam clear; chest CT's clear of cancer. On thyroid pills. Saliva slowly returning. Life is good.

Top
Page 1 of 3 1 2 3 >


Support OCF
Shop Amazon and Help OCF Help OCF
Who's Online
0 registered (), 57 Guests and 6 Spiders online.
Key: Admin, Global Mod, Mod
Forum Stats
10001 Members
23 Forums
15865 Topics
180149 Posts

Max Online: 141 @ 05/15/13 10:09 AM
Top Posters
davidcpa 8305
ChristineB 8285
EzJim 5260
Cheryld 4805
Brian Hill 4661
September
M Tu W Th F Sa Su
1 2 3 4 5 6 7
8 9 10 11 12 13 14
15 16 17 18 19 20 21
22 23 24 25 26 27 28
29 30
Newest Members
Elliot, Igowf, young and worried, BabyGirlEMD, KaylaCole
10001 Registered Users