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#143773 - 12/09/11 09:17 PM Re: Treatment has Begun! One week closer to the End! [Re: Gary]
David2 Offline
Patient Advocate (1000+ posts)

Registered: 07/12/09
Posts: 1252
Loc: Los Angeles
I agree with Gary. I went in two or three times for rehydration and it always made me feel much better (not sure if we're talking about the same thing - "infusion unit" - I just went to the RO's office and they gave me a bag of IV fluids for a few hrs). Also for mouth sores ask about viscous lidocaine. Just rinsing with baking soda in warm water every day is another good idea.

My best thoughts to you both.
_________________________
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

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#143790 - 12/10/11 11:51 PM Re: Treatment has Begun! One week closer to the End! [Re: David2]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Please mention the burning eyes to your oncologist BEFORE he gets his next chemo doses if possible (and don't let your husband con you into thinking that it has gone away or is not so bad - let the doctor determine this).

There are many side effects associated with cisplatin and 5FU and this could be one of them. As some side effects are cumulative (get worse with more doses), this might be an important. I have no idea if it actually is a chemo side effect, as only your doctor will be able to give you an idea, but would hate to think that it wasn't mentioned when it should have been.

Good luck next week


Edited by klo (12/10/11 11:57 PM)
_________________________
Karen
Love of Life to Alex T4N2M0 SCC Tonsil, BOT, R lymph nodes
Dx March 2010 51yrs. Unresectable. HPV+ve
Tx Chemo x 3+1 cycles(cisplatin,docetaxel,5FU)- complete May 31
Chemoradiation (IMRTx35 + weekly cisplatin)
Finish Aug 27
Return to work 2 years on
3 years out Aug 27 2013 NED smile
Still underweight

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#144474 - 01/04/12 12:18 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Don't know what button I hit but I had started a response that disappeared on me! Ouch! If this is redundant, I apologize.

So, as I was saying... round 2 of the inductive chemo was much friendlier. Because of significant response to first cycle -- tumor all but disappeared -- they backed down on chemo intensity and duration. It really did not shorten Jerry's 'recovery' period, but the symptoms were hugely reduced. Plus the anti-nausea meds were adjusted (replaced the Zofran with Emend) and we started the antacids four days in advance. Jerry did pick up a cold about a week ago. Nothing bad, no fever, but quite annoying. He also started to develop a rash on hands and arms about five days ago. Again, nothing huge, but also annoying. Friday -- three more days -- we go in to begin preparing for the chemoradiation phase of this treatment. Anxiety is setting in a bit. I know Jerry wants to avoid the PEG but I know I somehow should probably insist. I'm hoping the doctors insist -- or I should say "highly recommend" so I'm not left with the battle. But battle I will if it will save him from further complications later into the treatment.

I do hope that each of you were able to enjoy the holidays as best you couldl! Ours was a bit different but just being together was priceless! Thank you all for your support and wisdom! Take care!
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#144478 - 01/04/12 01:12 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
EricS Offline
Patient Advocate (1000+ posts)

Registered: 01/03/09
Posts: 1844
Loc: Idaho
Happy New Years Gayle!!

I'm happy to hear that you and Jerry were able to enjoy the holidays together, those are the moments and memories to hold onto during the tough times to come.

Please continue to use these boards for support when going through chemo/rads and let us know how you are doing, we are in your corner my dear. It's always a comfort knowing that there are people in your corner that can relate to what you are going through and can help steer you clear of some of the pitfalls of treatment.

Keep your chin up Gayle! It was good to hear from you my dear

Eric
_________________________
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.

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#144767 - 01/15/12 03:48 PM Re: Treatment has Begun! One week closer to the End! [Re: EricS]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
_________________________
Gayle, CG to incredible husband, age 53 yrs
DX 10/26/11, never smoked, casual drinker
Stage 4, T2 N3 SCC, right tonsil, node cluster in r. neck
Tx 2-3 cycles induction chemo followed by chemo-radiation 33 treatments w/concurrent cisplatin for six weeks of 7 week treatment
PEG in 02.03.12

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#144779 - 01/16/12 01:32 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8278
Loc: PA
Making travel plans when your husband has done 18 rad treatments is very ify. Of course everyone responds in their own way to everything and some sail right thru. For most of us we began feeling pretty lousy about the 3rd or 4th week of rads. Alot of how bad we felt was also due to chemo. Weekly doses of chemo seem to be better tolerated. I was scheduled for 3 big doses of cisplatin. After the first one I felt pretty bad so the second dose was cut way back and the third one canceled. That was just my experiences.

Being younger, he has a good chance of not having such a difficult time. Nutrition and hydration will play a huge role in how he gets thru this. Keeping up with 2500+ calories and 48+ oz of water daily will make help him to get thru it easier. Cant skimp one day thinking to make it up the next, that only leads to becoming malnourished and dehydrated.

I think its a great idea to have goals. Having the graduation to look forward to may give your husband something to work towards. It might help him to stay focused and push him to get the best nutrition and hydration he can. Everybody needs a reason to get up in the morning. Being a parent, seeing your child graduate is something not to be missed. Just be especially careful with germs and using the hand sanitizers as traveling while your immune system is low is risky.

_________________________
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

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#144780 - 01/16/12 01:38 AM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
Maria Offline
"Above & Beyond" Member (500+ posts)

Registered: 07/15/11
Posts: 860
Loc: Ohio
_________________________
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.

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#144860 - 01/19/12 02:52 PM Re: Treatment has Begun! One week closer to the End! [Re: Maria]
Leslie B Offline
"Above & Beyond" Member (500+ posts)

Registered: 05/05/06
Posts: 712
Loc: Washington DC
Originally Posted By: Gayle
So, I am exploring airline tickets to get him to Texas but of course big price difference in fully-refundable vs. non. Just looking for feedback, thoughts, experiences.

Have you considered getting the cheaper tickets and also getting travel insurance? Most have a "cancel for medical reasons" clause, and some allow you to cancel for any reason.

In September 2010 we bought non-refundable tickets for a trip overseas to visit our son in early 2011. There was a small possibility that my husband was going to have to have back surgery (not cancer-related) sometime before the trip, so I looked into travel insurance. We are members of USAA, and its travel insurance affiliate offered a "cancel for any reason" clause -- while the premiums were 50% higher than for the same policy without that clause, it still wasn't that expensive. (And as it turned out, he didn't need to have surgery -- but it still was worth the peace of mind to know that we could have canceled the trip if we needed to. I believe that at the time we purchased our policy it offered a full refund; now I see it's a 75% refund -- but that's better than nothing.)

I'd think the insurance cost, even with the "cancel for any reason" extra, would be less that the price difference between fully refundable and non-refundable tickets. Note that some policies include a waiver for pre-existing conditions (thus allowing you to cancel because of a pre-existing condition) as long as you purchase the insurance within a few days of getting your tickets and the persons being insured were medically able to travel on the day the tickets were bought, so perhaps you could avoid the "cancel for any reason" extra. As always with such things, read the fine print carefully; if you have questions, call the company (and take good notes!).

If you decide to get travel insurance, I'd suggest buying it separately, and not from the little popup or tick-the-box-if-you-want-it on your airline or travel agency website -- that way you can more easily customize the insurance policy for what YOU would need. If you are members of USAA, search for "travel insurance" on the USAA website -- the link to the affiliate is under "Cruises & Travel Insurance" in the search results (the page itself is titled "Vacations and Travel Insurance"). If you're not, you can go to insuremytrip.com (which offers policies from several companies) or travelguard.com -- both are reputable and have a wide choice of policies/coverage. You can at least price it out and see it works for you before going ahead and purchasing your tickets.
_________________________
Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.

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#144879 - 01/20/12 02:58 AM Re: Treatment has Begun! One week closer to the End! [Re: Leslie B]
Cheryld Offline
"OCF Canuck"
Patient Advocate (old timer, 2000 posts)

Registered: 12/22/10
Posts: 4804
Loc: Toronto canada
Check with your credit card company - visa (our visa) has. Cancellelation insurance built in. No extra fees... I discovered this this year!
_________________________
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

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#144899 - 01/21/12 06:27 AM Re: Treatment has Begun! One week closer to the End! [Re: Cheryld]
HankXavier Offline
Senior Member (100+ posts)

Registered: 07/31/11
Posts: 130
Loc: Ohio
Hydration was titanically important in my treatment. I cannot express how important full hydration really is. My worst moments, a few of them very dangerous, were because I was not properly hydrating. It's so easy to just go to bed and sleep the day away since you are feeling crappy anyway. I ended up in the ER three times that way. And for the patient, it's very easy to lose track of how much you are hydrating with everything going on, not to mention all the drugs make forgetting things quite common. The water also helps you to keep swallowing, which exercises the muscles and keeps them in shape. So water water water. Water is life. Have some and then have some more!

Also, please do not be so hard on yourself as a caregiver. This is in many ways even more emotionally taxing for them. The patient often becomes very focused in their attention and are concentrating on just putting one foot in front of the other. The magnitude of everything is often lost to them between dealing with pain and sickness and of course... the drugs. But the caregiver is often assaulted with the full totality of the struggle and it can be entirely overwhelming. My hubby shut down a few times from it when he refused to take a breather. You are no good to your husband if you aren't also treating your OWN struggle. Take a break. Ask for help. Talk to people you trust about your experiences and frustrations. Whatever you need to do in order to maintain a level of commitment that gets him through this.

And remember to always keep love at the front of all you do. The love is the light that cannot be extinguished. It burns as long as we breathe life into it. So remember to breathe. Remember to breathe. You can get through this. You can.
_________________________
Dx: 3/11 Stage III glottic laryngeal SCC HPV 16+ Tx Start: 7/18/11 chemoradiation 7wks - Tomotherapy IMRT x 34 / Cisplatin x 7 Tx End:9/1/11]-[as of 1/20/12 - ALL CLEAR!]



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