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Joined: Oct 2011
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KP5 Offline
"Above & Beyond" Member (500+ posts)
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If you are asking me David, Kev had it twice a day. He did 3 weeks, 1 week break, then another 3 weeks.
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 10/12 and 10/13 and ct in 6/14
Joined: Jul 2012
Posts: 47
curly Offline OP
Contributing Member (25+ posts)
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Hi guys,

Thanks so much for all the support. So today was day 21 of rads. 12 more to go. My bathroom is now full of magic mouthwash, meds and creams. I have a fentaynal patch (I am sure I am spelling that wrong) which does not seem to do much but when I take oxycodone then I feel a bit better. I also decided to work from home part time, which makes life a bit easier. I am doing my best to get in as many calories as possible with the high boost drinks. Mucous is crazy. Cough medicine seems to work a bit but again, not much. I feel like a camel spitting all the time. I am so happy I found this site, because if I did not I do not know what I would have done.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
Joined: Oct 2012
Posts: 118
Senior Member (100+ posts)
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Posts: 118
Curly,


When Reg was going through chemo and rads back in 2007, I found a company that makes these Scandi Shakes. Mainly made for patients with cancer or sever nutritional needs. They pack 600 calories with 8 oz. of milk. They taste good. Not mediciney ike ensure. They come in strwberry, chocolate and vanilla. With the vanilla the flavors are endless. I used to add peanut butter to the chocolate, or banana to the strawberry. I would add bluberries to the vanilla. The company also has a tasteless powder called scandi-cal. 35 calories per 1 tbsp. It mixes well with any food or beverage. You can find the company on the web @ axcan.com. Alittle pricey but they really helped my husband. In fact I've already ordered some for his upcoming surgery.


Bette/CG to husband Reggie 66

dx 1: SCC Soft Palate (12/06)
tx: chemo and rad

dx 2: SCC 6 cm tum rt. vocal chord (12/09)
tx: total laryngectomy with stoma, 2 nodes

dx 3: SCC 4 cm tum BOT (10/16/12)
Tx: partial gloss w/ mod deck dis 4 nodes incl. part. pharyngectomy
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"OCF Canuck"
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"OCF Canuck"
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Hi Jessica.

Only 12 left!! Awesome - they will (in hindsite) go quickly. Sounds like you are handling it all remarkably well if you are still working - good for you!! You are alot stronger than you thought you were.

With regard to the mucous - this might not work well for you now as your mouth will be full of sores, but as it heals and the mucous is still there, get a water pik and let it clean out your entire mouth a couple of times a day. Lord that does feel wonderful to have a 'NORMAL' mouth even if it is short lived.
But, I stress - not now. When I was at this point of radiation I had many sores in my mouth - even brushing my teeth caused the sores/blisters to break. Be tender - they will heal, but it will take time.

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Posts: 47
curly Offline OP
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Thanks Bette and Donna. I have been getting my mouth sprayed every day by the nurses which is great and cleans out the mucus. Only problem is that like 1/2 hour later it is back. I tried the waterpik at home but it made me nauseous I think because I was not using it correctly, maybe I was aiming to far back (sorry for the TMI). Will try again after this is over. Every time I finish the shakes I give myself a little cheer for finishing them. Such a change from when I used to eat like a horse. Bette going to try the Scandi Shake, thank you for the recommendation.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
Joined: Dec 2010
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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Did I say waterpik to you yet? I say it all the time. Waterpik - cleans out the GUK, keeps your mouth clean, use a mild non alcoholic mouth wash put a bit in the waterpik bowl with a bunch of Luke warm water, use the tongue cleaner attachment on the lowest setting, and clean around your mouth. Tis awesome!


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
Joined: Apr 2012
Posts: 47
"OCF across the pond"
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"OCF across the pond"
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HI Curly
you already have some good advice, i am impressed you are still working my last rad was 1st of september and I can only tell you how good i feel now to then. So it really is a full time job just managing the treatment issues and soldiering through this last week, remember it is the treatment giving you grief not the cancer, and you are fighting for a big reward. From my last chemo every day has been up all be it baby steps. All I could do was amuse myself seeing the shapes my spit made in the sink, like eskimos with snow you will have dozens of different words to describe the different shape form texture of mucus you will go through. 8 weeks out of treatment my mouth is so dry i crave a bit saliva. keep on keeping on.


21st March squall cells.Endescopy not oesophagus, ENT .April endo nose CAT MRI general Panendoscopy prim-HPV 16 base of left tongue one node-stage 2.23rd of May.14/5/12 9 teeth out.8/6/12 PICC inserted.11/6/12 1st Chemos 25/6/12 2nd Chemo Cisplatin5FU:27/6/12 PEG23/8/12 Radiation finished 1/9/12.
Joined: Aug 2012
Posts: 56
Supporting Member (50+ posts)
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Posts: 56
Jessica--in addition to what the others have suggested, consider the possibility that you may be dealing with depression also. It sneaks up on you. The treatment can be very emotionally traumatic as well as physically challenging. Antidepressants and counseling can be extremely helpful. I did not see the depression in myself, but others did. When I first went back for a follow-up appt two weeks after my radiation tx's had ended I found myself in that same waiting room I had sat in every day for my treatments, and within minutes I became very upset, nauseated, and highly distressed. I broke down and cried when I saw my doc that day, and that's when I began to realize just how emotionally challenging it had all been for me. Short story: I am now taking Remeron, a mild antidepressant that has the advantage of improving appetite (was struggling to get an adequate intake, had lost 40 lbs in 2 1/2 mos). It has helped my sleep and my mood. If you are having trouble coping, which many of us do at intervals, it is worth being evaluated for depression, as once that improves coping becomes very much easier. Good luck, you are in my prayers!



Ed H, NE Ohio
SCC BOT with lymph node involvement, HPV+, diagnosed 7/12
Radiation and Cisplatin
Joined: Apr 2012
Posts: 111
"OCF across the pond"
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"OCF across the pond"
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Posts: 111
Cubankeith, great to see you back, I was wondering how you were doing. I'm finding it difficult to put spit in quite the same category as snow though, but you made me laugh.

Curly, it is definitely about small steps forward, with the odd one backwards, so take heart when you see small advances. Sally


Dx 10/11 51yrs LBOT Stage 4 2nodes HPV16+. Non-smoker mod alcohol.
10/11 Induction chemox2 (Docetaxel, 5-Flu, Cisplatin) then Cisplatinx2 IMRTx30. Ended 01/13/12.
12/07/11 RIG. RIG removed 05/05/12.
4/12 CT scan clear. Visual scope checks clear as of 10/13. Learning to live with eating challenges.
Joined: Jul 2012
Posts: 47
curly Offline OP
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Posts: 47
CubanKeith, you made me laugh with the vision of spit LOL. Definitely this process is one step forward, one step back. 6 more treatments left. Thanks Ed about the depression information. No doubt I am dealing with it, I am kind of in that state of when this is over, then I will deal with my emotions. Just going to keep pushing forward for the next week so I can get through it. This board has been just so helpful I would be so lost if I never found you guys.


Stage 1 tongue carcinoma in 1999 and again in 2001, removed surgically. Stage II tongue carcinoma in 2012, surgery, neck dissection, flap from forearm, trach (removed in hospital before leaving). Finished 30 rad tx on 11/28/12.

Jessica, age 38
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