#54668 04-09-2004 11:20 AM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Hello all... still blessed by this board immensely...
I just had a question or two for folks who have been through IMRT radiation. I'm about three months out from my last treatment (wa-hoo!), and for the past month or so my neck on the side that got hit the hardest is pretty stiff and sore. And while I don't feel any lumps or anything in my neck, it does feel a bit like my glands on that side are swollen if that makes any sense. Some places are still pretty tender...
I was just curious as to whether others have had this experience and if there is way to work the stiffness out (massage? warm damp towels?)... It doesn't help that I'm a sports photographer who often wears a big heavy camera around my neck... That may be part of the soreness...
Also was wondering what folks recommend for dry mouth after IMRT. I keep reading where it takes up to 18 months for saliva flow to kick back in (as much as its going to anyway). I stopped taking Saligen pills in mid-February because of the side effects (like night sweats, a little nausea, etc). Should I go back on them for awhile? Are there other things that help? It's mostly a pain at night when my mouth dries out, and I have to keep sipping water.
I'm mostly concerned about taking care of my teeth, and without good saliva flow I fear I'm opening up myself to lots of decay potential. I do use Biotene toothpaste and sometimes the mouthwash...
Thanks for any help/advice/experiences everyone is willing to share... Happy Easter weekend!
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54669 04-09-2004 12:38 PM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jul 2003 Posts: 1,163 | Hello AzTarHeel,
I had IMRT 33 treatments ending in early November. My neck is a little stiff and hard but I hardly notice it. I was lucky in not having much saliva loss. When you said you feared tooth decay due to lack of saliva you are correct. I have been using Biotene toothpaste and biotene mouthwash three times per day. My last cleaning was the best in my life. It was a relief. I think I'll always have some hardness in the neck due to the amount of surgery I had. I am shaving with a blade now!!!! No Blood Yet!!!!
Take care, Dan
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#54670 04-09-2004 12:56 PM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2002 Posts: 3,552 | I had IMRT and I don't have any noticeable stiffness anymore (at 13 months). You've still got a lot of healing to do yet. It took the longest for the area targeted with radiation to heal.
When I first started playing the electric bass again it killed my shoulder (it weighs about 20 lbs.) It took some time to regain my stamina. be patient you'll get there
Massage probably wouldn't hurt. There are massueses that specialize in the neck.
My salivary function has returned fairly well but I still have dry mouth issues. Watch your salt intake - that can make the dry mouth a lot worse.
You should be using dental trays and flouride regularly to protect your teeth. I use a Waterpik after meal each as well. I even have a battery operated one for traveling. I also get my teeth cleaned every 4 months.
Sounds like you're doing great!
Gary Allsebrook *********************************** Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2 Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy) ________________________________________________________ "You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#54671 04-09-2004 05:04 PM | Joined: Mar 2004 Posts: 417 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Mar 2004 Posts: 417 | Tar Heel: I have been a professional photographer for 40 Years. I have worked many sporting events where "LONG GLASS" was involved. I know how much an SLR with a 400mm lens can weigh. Most of the time lens of this focal length are supported by a monopod but occasionally when moving in for what you think a great shot adrenal glands take over and you find yourself supporting the camera, lens, and monpod with your neck. This is probably the root of your problem. I have several aftermarket straps for different cameras, some very wide and very long. When assigned to a sporting event, rare for me nowdays, because I cannot move as briskly as I once moved, my age... I wear the strap attached to camera across my left shoulder and under my right arm, this transfers the weight to shoulder instead of neck.. Non professionals would say why strap at all, use the monopod.. BUT, you and I know that long glass is expensive and with humpten other photographers all competing for the same photos a bumps and shoves coming from all directions, a damaged 400 f:2.8, $14,000.00 lens can ruin your day. darrell
Stage 3, T3,N1,M0,SCC, Base of Tongue. No Surgery, Radiationx39, Chemo, Taxol & Carboplatin Weekly 8 Treatments 2004. Age 60. Recurrence 2/06, SCC, Chest & Neck (Sub clavean), Remission 8/06. Recurrence SCC 12/10/06 Chest.
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#54672 04-09-2004 05:42 PM | Joined: Mar 2002 Posts: 1,140 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Mar 2002 Posts: 1,140 Likes: 1 | AzTrHeel, re IMRT and dry mouth, it will take a year or more to get your saliva back. I used to suck on sugar free hard candies, which stimulated the saliva during the day. At night, I started using those nose things, the name of which I cannot think of at the moment (CRS disease) which are for snoring. They open the nasal passages wider, which let me sleep with my mouth closed. This was a major accomplishment as I have always been a mouth breather. If I can do it, anyone can. Wait until the first time you can lick an envelope without thinking about it -- then you will know you are really making progress. Gary is so right about salt, and even though my docs said an occasional glass of wine will not hurt, I will never do that again, as I had dry mouth all the next day. Otherwise I am very comfortable and do not need to carry water. I am 18 mos. post rad/chemo, but think I had most of the saliva back at the 12 mo. point. If I had any patience pills, I would send you some. It just takes time. | | |
#54673 04-09-2004 06:27 PM | Joined: Dec 2003 Posts: 207 Platinum Member (200+ posts) | OP Platinum Member (200+ posts) Joined: Dec 2003 Posts: 207 | Thanks everyone for the replies... I guess my big concern with my neck was that it was sign of more disease... There are some real tender spots there... As for the dry mouth stuff, I knew it was coming, and glad to hear of some strategies to deal with it...
I guess I should use a monopod more with my camera... I'm hoping to start swimming again when our pool opens in late May... I think I'll be ready for that again - I hope so anyway...
Tongue cancer (SCC), diagnosed Oct. 2003 (T2 N0 M0). Surgery to remove tumor. IMRT Radiation 30x in Dec 2003 - Jan. 2004. Recurrence lymph node - radical neck dissection June 2004. Second round of rad/chemo treatments ended Sept. 2004.
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#54674 04-11-2004 12:14 AM | Joined: Apr 2004 Posts: 143 Gold Member (100+ posts) | Gold Member (100+ posts) Joined: Apr 2004 Posts: 143 | Two suggestions, not sure if I should have put them on adunctive line or here, but they are pretty harmless.........After Frank`s first radiation go round, I used aloe vera juice with essential oil of lavender, say, several drops to an ounce of juice, lavender is soothing, antiseptic and very calming, also you can use virgin olive oil if you can`t find aloe vera. Secondly, to you guys who are golfing again with sore muscles, we used Tiger Balm, scent is overwhelming, but it`s great for sore muscles, do not use near any open wounds...thirdly, a trick I learned her in Maine, is a rice bag....fill a tube sock with rice and stick it in the microwave for a couple minutes........I`m truly addicted to rice bags, and it can be a dangerous addiction, I`ve set several on fire and had to toss them outside! Since I seem to be always cold, my ricebag is my friend. If you want to try the lavender, make sure you get the real thing, Vitamin Shoppe has good quality. I tend to try to us anything natural. Again I don`t think any of these things are harmful, or in anyway should replace medical care.......Hugs, Dee | | |
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