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#144913 - 01/22/12 12:27 AM Re: Treatment has Begun! One week closer to the End! [Re: HankXavier]
AnneO Offline
Gold Member (200+ posts)

Registered: 12/30/10
Posts: 284
Loc: Kansas
And some airlines (Southwest for sure) let you cancel and reschedule without losing anything, which is a good option if you think your plans will include travel at some point later.

Sounds like you and your husband are doing well considering what it is you and he (and all of us) have to go through.
I agree that you need to take time for yourself. And he will get mad at you at some point just because you are normal and can eat and drink without pain, etc. He may internalize it, but it likely will be there. We are humans, what else can we expect?

I don't know about the lighter treatment, it depends. I'd sure want to get more than one opinion on that; you want to get it done right now! I know they decide the radiation gy dose based upon tumor size, and probably other tumor factors. HPV might be a different story from "regular" scc. I had radiation & chemo to chase the possibility of microscopic cancer leftovers! You never know if you needed it or not if you have good results. I don't regret it despite the side effects.

I sure don't blame you two for wanting to be at your daughter's graduation. Hope it all works out.

Best,
Anne
_________________________
SCC ventral tongue 9/2010, excisedw/clear margins:8 X 4 mm, 1 mm depth
Neck Met, Oct/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11
GIST tumor sarcoma, removed Sept,'11,no TX needed
Non smoker

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#145224 - 01/29/12 09:48 PM Re: Treatment has Begun! One week closer to the End! [Re: AnneO]
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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#145236 - 01/30/12 02:56 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: 873
Loc: Ohio
Hi, Gayle
my husband's therapy machine went down more than once - scared me, too, but they always got it working again. The RO will have a plan for 'make up' sessions if it is needed. Missing a time or two is normal.

1. Cisplatin vs Carboplatin: don't know.
2. The mandibule: with a tonsil cancer, they are not concentrating the dose directly at the mandible - it's not going to get the full blast. There are problems with ORN as a late effect but its not a sure thing. My husband's RO emphasized that nutrition (not just calories) was important to rebuild tissue and bone.
3. Dental: go for the trays asap. He will need to get them made by taking an impression, and that may be too uncomfortable soon. He may need to take some time off from the trays as the radiation gets intense. The trays will be there for the long term.
4. Recommendations for other comforts:
a. moisturizers/lotions - aquaphor (by Eucerin) after the radiation session. Toward the end of the therapy, the RO switched him over to burn cream.
b. humidifiers - yes - we have a Honeywell Invisible mist. Also, the white noise helps ME sleep.
c. mouth wash - Biotene.
d. toothpaste - Biotene.

*** tooth brush ***
He will want a VERY soft one. I couldn't find one for adults ...so I got him a Sponge Bob one. Made him laugh.

e & f - don't know.

Other stuff:

'Magic Mouthwash" or "BMX" - get this before he needs it.

If (when) he goes on narcotic pain meds, don't let the constipation from them get out of hand.

Hugs back to you, Gayle.
_________________________
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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#146721 - 03/03/12 09:25 PM Re: Treatment has Begun! One week closer to the End! [Re: Maria]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Well, I started this email train with one week down... we are now down to one week remaining. I'd like to say how happy we are to be seeing the "light" at this end of this four-month ordeal, but this week Jerry has been hit by the full force of the treatment effects.

I thank God that he finally submitted to getting a feeding tube because he can no longer eat, nor really swallow. He started the patch yesterday and the doctor doubled his oxy -- which he is resistant to take but he has again agreed to do so due to the extreme pain. Neither one of us do well with pain meds -- make us quite nauseous on their own -- but I worry that he is getting sick possibly because he is in so much pain.

Doc also wrote a script for some morphin dissolving tab but Jerry does not want to try yet. Wants to give the patch a chance and we were told it takes about three days to become effective. That's fair. He says his pain level is at an 8; reserving 10 for childbirth he says, well that means he is at a 9 with three weeks to go as I have read here. I'm doing my best to feed him close to 2500 cals and I think I recall 48 oz of water.

He has for the past three nights thrown up around the same time each night. Since we are done with the chemo component and only have 5-7 blasts left, I'm hoping the nausea will subside so he can take the full measure of pain meds. He's already lost 23 lbs and was not overweight to begin with. I tried to 'fatten him up' before treatment started but he's lost all that and more.

We had to do the suppository last night. While I know there is not much there to move out, nonetheless, know that those toxins need to be moved out. Thank goodness it worked.

Not sure why I'm here. Just needed to share some of the ugliness with a group that knows it to be the norm -- at least if I'm sharing anything that is not, please inform my ignorance. The family and friends -- while they truly care -- would not benefit from hearing how awful he really does feel. In fact, he cannot really talk due to the pain so I've been making calls for him as well this a.m. I cannot wait for the next three weeks to go by!

Thank you for listening to me unload! I look at all of you who have made it through this ugly treatment phase and those going through and tell you how special and strong you are! And then to take the time to come to this site and share your experiences to help those of us, well, you are all angels and I pray for your health and quality of life! Bless each of you!
_________________________
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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#146728 - 03/03/12 10:46 PM Re: Treatment has Begun! One week closer to the End! [Re: SoldierWife]
klo Offline
"OCF Down Under"
"Above & Beyond" Member (500+ posts)

Registered: 05/18/10
Posts: 638
Loc: Sydney Australia
Hi Gayle

Alex had a similar treatment, did really well with the chemorads (although this is relative as his complications during chemo were catastrophic, making the chemorads a picnic by comparison).

However, about 1 week from end of treatment, pain became too much and nausea and vomiting needed managing. The nausea and reflux persisted for around 6-12 months and we now believe the original chemo had an ongoing effect on his entire Gastro-intestinal tract that Alex still has his moments with.

He continues to take an anti-reflux medication (Somac) and took a short acting anti nauseant just before he got out of bed in the mornings (he used to lie in bed for about half an hour as we thought being vertical might be setting him off) and in the evenings before the bulk of his nutrition was administered via PEG.

Painwise, he took the fentanyl patches, long acting oxycodone and short acting oxycodone. This went for 3 weeks (from exactly where you are now to 2 weeks after treatment), then tapered to just the 2 oxycodones before withdrawing from all pain medication when the ulcers started disappearing.

Despite the worst period still being in front of us, the end of radiation was cause for a great deal of relief and a strange sense of anti-climax. We thought of it as being at the bottom of the hole and looking up to the sunlight for the first time in 6 months where previously we had been sliding into that hole. Alex checked himself out every morning and regularly told me that he was lucky today as he wasn't too bad which meant even if tomorrow was awful, it was one less day of suffering to consider.

May I suggest you keep track of his "good" and bad days as in a couple of months time when your husband is frustrated by his perceived lack of progress you will be able to reassure him that he has indeed progressed and that this time last month he had 3 good days and 4 bad ones in a week, this week he had had 6 good days and 1 bad one. Progress is slow and survivors may need reminders and examples of how far they have come. They may be unable to see it themselves.

Watch for confusion/concentration issues caused by chemo too - Alex described it as his thoughts being tangled. The confusion often manifested as irritability as he tried to make sense of something I might have just said that made no sense because he had already forgotten the context. If Jerry feels this, let me know as there are things to help this too and it does eventually go away.

And remember if he snaps at you, he really thinks you are a goddess but the pain and the pain killers and the frustration are giving him a hard time smile
_________________________
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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#146731 - 03/03/12 11:19 PM Re: Treatment has Begun! One week closer to the End! [Re: klo]
ChristineB Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Registered: 06/23/07
Posts: 8478
Loc: PA
Im so sorry Jerry has begun to feel lousy. At least he is almost finished so only a few more weeks before he will begin to feel a little better.

A couple things in your post caught my attention...

The fentanyl pain patch takes up to 24 hours to kick in. If its been past 24 hours and Jerry has not felt any relief, call the doc and tell them you need a stronger patch. A starter dose should be 25 or 50 mg, if it doesnt work its ok to increase it. The fentanyl patch can go up to 150mg which is the highest most people take. Be careful with them! Read all instructions and follow them to a T! No hot showers or baths, never cut or fold the patches. If those things occur it could lead to an overdose of the medication. Being in pain does NOT help the patient.

I know it hurts to swallow, but Jerry must continue to take small sips of water a few times a day. He will have bigger problems later if he doesnt keep those muscles active.

Nutrition is the key to thins whole thing. Push to get him to take in a minimum of 2500 calories every single day. Water should be not a drop less than 48oz per day. If possible shoot for higher on both things, like 3500 calories and 64 oz water daily. This will make a huge difference in how Jerry feels. If he doesnt get enough even for one day it cant be made up for on the next day. If he doesnt get enough on a regular basis, he will need to get an hydration IV at the hospital or could be hospitalized for malnutrition and dehydration. Thats how important this is. I ended up being hospitalized a couple times for this so I know what Im talking about.

I wish you both the very best with everything. Please keep us posted and if you have questions, we are here for you. Good luck!


_________________________
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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#146737 - 03/04/12 02:27 AM Re: Treatment has Begun! One week closer to the End! [Re: ChristineB]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
Hi Gayle,
I remember these last few weeks only too well. You truly are doing a great job. You're right too, at this point you can see the light at the end of the tunnel. Just a little bit longer.
As you look back at your time isn't it amazing how far you have come? Where we are, 4 months out of tx, it seems like it was so long ago. The after effects (affects?) linger, but the constant pain is gone.
When I read one of your posts and you said you didn't want to be mean I had to laugh. I remember at one of our Dr appts Kevin was groveling about something and giving the nurse a bit of a hard time. I finally said " Ok Debbie, thanks for your help, but we are done with this." She just looked at me and I told Kevin to get up and we were going home. I told him that if he was going to be a ---- then he really wasn't interested in what was best for him so none of us were putting anymore time into him. He just looked at me and said " I didn't say I wouldn't do it, I was just complaining about it." He had been complaining loudly and it was awful. So I said "so, you're going to do what they are telling you and the groveling is going to stop?" He said yes and it did. Sheesh...did he think any of us were having fun??!! We laugh about it now. He is 6 feet tall and I'm 4'11, and here I was treating him like a kid. But it straightened his attitude out and he got amazingly positive after that. I think he realized he had fallen into the "poor me" trap and fought to get out of it. After that he became the chemo/radiation rooms clown. I can't tell you how many friends we made and people I prayed for because I wasn't having to worry about him as much.
All this to just say your comment made me laugh at the memory.
The caregiver roll is soo unbelievably hard. Keeping it all going plus watching our loved one go through it all is just overwhelming. I found this site when we got to our last week. Before that I was on my own and all our friends seemed to disappear. And like you said, his family really didn't want to hear ANY negative so I didn't have anywhere to vent. I just got in the shower and cried! Then I started talking to the nurses and they were a tremendous help. Then we found this site! What a Godsend!!!
Hang in there. Keep venting here. We have a follow up PET this month on the 12th which is causing me quite a bit of anxiety, but I am keeping it under wraps, except for on here, because "nobody wants to hear it!"
Oh, we also used the Biotene products, an extra soft toothbrush, the BMX and the Aquaphor. Once the outside radiation burns started we switched to the Silvadene cream. We also put a bandage over it so his shirt collars didn't scrape.
The pharmacist told us that the patch would be at full effect in 24 hours, so....
Blessings,
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

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#146742 - 03/04/12 03:11 AM Re: Treatment has Begun! One week closer to the End! [Re: KP5]
lam007 Offline
"OCF Down Under"
Supporting Member (50+ posts)

Registered: 12/01/11
Posts: 60
Loc: NSW Australia
Just wanted to let you know that I have been following your story. My husband was diagnosed on the same day. Rick didn't have the induction chemo but did the weekly chemo/7 weeks rads thing, finishing the chemo Feb 1 and rads on Feb 10.

I'll post an update on Rick's status some other time and don't want to take over your thread but would like to say that it all sounds very familiar. But now, a short 3 weeks out, our world looks very different. While he still has a massive hole to climb out of, he's got some spark back and it is such a joy. You'll experience this, too, although there is no telling when it will occur.

Now here are words of caution from a fellow caregiver who has just emerged from the other side..................

Since the 26th of October I've had my foot on the accelerator. This has been full on and all consuming. Just when I'd get a grip on one issue, something else would take its place. The ground shifted then shifted again and again. The second to the last day of rads he finally ended up in the hospital due to dehydration, malnutrition and anemia. (Christine goes, "Tsk,tsk, I try to tell you all.") And there he stayed for 8 days. The man I brought home, while still really unwell, was markedly improved.

So about 2 weeks ago I finally got to take my foot off the accelerator and you'd think I'd be happy but instead I've been moody and irritable. Me thinks it has been a normal reaction on my part to an abnormal situation. That things finally settled to a point where I did some letting go. That it is my heart and head's way of dealing with what's happened before I knuckle down and get on with life. And that it is an acknowledgement of the enormous fear and grief that is just below the surface.

Allow yourself to feel however you want when you finally get to come up for air. You'll have earned it.
_________________________
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.

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#146764 - 03/04/12 10:59 PM Re: Treatment has Begun! One week closer to the End! [Re: lam007]
KP5 Offline
"Above & Beyond" Member (500+ posts)

Registered: 10/09/11
Posts: 795
Loc: NY
So, so true. I had forgotten about the crazy emotions at the end. Good point to bring up. IT'S NORMAL!! ;o)
_________________________
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

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#146766 - 03/04/12 11:47 PM Re: Treatment has Begun! One week closer to the End! [Re: lam007]
SoldierWife Offline
Contributing Member (25+ posts)

Registered: 10/31/11
Posts: 32
Loc: Colorado
Thank you so much for sharing your time and experiences. I believe the patch might be kicking in a a bit. Hope so. And Christine thank you for the reminder about hot showers with the patch. While I read it in the literature earlier, well, to be honest, I had completely forgotten, and just today we were planning to get him into the shower - argh! Wish I had a memory!

Jerry does well with water -- by tube and mouth -- but food thru tube has not been complete success. Every night about eight he throws up (ouch!), and then today, during a feeding it just stopped flowing in. We tried to put water in but it would not go either. Gave it another 30 mins and was able to get 4 oz thru. Then at the onset of the next feeding a couple hours later, right after hooking up and before pouring in liquid food, Jerry coughed. The vial filled up with stomach liquid and then did not want to go back. Gave it a few minutes and put water in, not the food. Went thru ok and we went ahead and put in the 12 oz of food. Since he cannot eat by mouth anymore, and the only 'food' we were provided by the nutritionist, is a whole 375 cal per can, I am trying to get 6-7 cans in a day. And since he gets ill around 8 p.m., have been trying to get them in before 6:30 7:00 which means an 8-oz can about every 2 hrs. Is that too often? Could his stomach be backing up? We see the doctor tomorrow and I believe it is a question worth asking -- especially if his weight has dropped even further -- but thought I'd get out to this group for any thoughts, recommendations, scoldings... Thank you! I am being paged. Thank you again!
_________________________
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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