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Starting Treatment Tomorrow

Jimbo55's picture
Jimbo55
Posts: 572
Joined: Jun 2010

Hi

I'm new here and just been diagnosed with Stage IV BOT SCC. Am scheduled to begin Chemo/IMRT on June 15. Two weeks ago had a neck dissection to remove a few lymph nodes on the left side of my neck, it was then they determined the cancer is originating at BOT.

I'm from Chicago originally, but have lived in SE Asia for the past 20 years. Currently working in Cambodia and will have the treatment in Bangkok, Thailand. Fortunately there are several excellent hospitals in Thailand.

Cheers.
_________________________
Jimbo
5/21/2010 dx Stage IV BOT SCC T2 N2 M0

Lena Rose
Posts: 73
Joined: Apr 2010

but wishing you all the best as you go through treatment and post treatment.

Kent Cass's picture
Kent Cass
Posts: 1748
Joined: Nov 2009

And, sorry to hear you've got what we all share, Jimbo, which is of the H&N. I'm originally from north-central Illinois. Would be interested in hearing of your C&R specifics- number of rads, and delivery schedule of the Chemo- and what Chemo med you'll be getting. Hopes and Prayers are with you.

Believe

kcass

Kimba1505's picture
Kimba1505
Posts: 557
Joined: Apr 2010

Hi Jimbo,
My partner, Mark began his treatment this past Tuesday with Cisplatin and daily radiation for 6 weeks. His primary was in his tonsil and last month he had the tonsil and surrounding areas removed surgically (by a robot) and then less than a week later had radical neck dissection with all his lymph nodes on the left side removed.
What we have learned is every one is different. While it is very helpful to hear everyone's experience to give you a framework, you just don't know how you will react. The specifics of your chemo and radiation, like kcass asked, will get you more specific feed back to your particular situtaion.
Like others here, I am sorry that you have had to find this site; but even being in Cambodia, you will find all of us right by your side.
Good Luck Jimbo.
Kim

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

Hi Jimbo,

Sorry to hear you joining our club, but just know you can get through this, a ***** as it is.

I posted way back a piece on managing your mask etc. You can see the full thread if you search 'Surviving the Mask' as there were many good comments added. The main post I have cut and pasted below.

===============
For all about to start radiation with the 'Mask', I thought to start a separate thread as it appears many threads these days are getting too 'crossed' up and lose track of the original purpose or the poster.

Micktissue is about to start so these and following posts may assist.

You will have your mask made/moulded by your 'techies'. Once it's done - make sure the mouth piece you have has a large enough hole (and clearly cut) to allow easier breathing. The Techies on hand can fix this if the hole is not adequate.

You can ask to have some parts of the mask trimmed if there is too much pressure on any point or area but it should be firm so you don't move and let the rads hit a non-target area. THIS IMPORTANT ! It shouldn't hurt though. Too much pressure around the nose and throat will cause more distress as your body tells you instinctively that your breathing is threatened. This can be overcome by relaxing.

I used a nasal spray before each session to allow easier breathing. You can breath through both nose and mouth at the same time. Learn how to switch between the two and to use both at the same time. This will be important if you start getting heavier mucus build up later-so practice earlier in your treatments. It is also a good distraction.

Learning how to breath is important and also helps you relax as you can focus on something other than the big humming machine. Breath deep and steady and visualize the cancer cells being chomped up by a Pacman, or .... just think of something nice.

Hack and spit as much as you can 'before' you go in - as mucus may increase as the weeks go by. As said earlier if you feel your throat blocking a little with mucus during a session, you can usually breath your nose. That's why you are best to practice consciously changing between the two to avoid any panic.

Learn a pattern of relaxation and you will find it will become easier and the sessions will be over quickly.

Music really does help and I used a compilation of classic and classical non vocal music but whatever gets you through is good.

Use relaxation meds if they help and you find it necessary but as with anything, the less medication the better as your body will be dealing with enough.

In the later weeks I rinsed my mouth with a Saline mouthwash and also used a bit of Mouth Gel (Biotene) along with the Nasal Spray as part of the pre-session routine as you will start to get a dry mouth later in treatment.

Other related tips are to get and use an electric razor (for guys) and get and use good quality 'baby' shampoo and face wash products / solutions (Not Johnson & Johnson). Your skin will become more sensitive. And I do mean stuff you use for infants

I know you will get this Mick and others about to go in and I hope the few tips above help.

Regds Scambuster

debbiejeanne's picture
debbiejeanne
Posts: 2761
Joined: Jan 2010

jimbo, I'm sorry to hear of your diagnosis but want to welcome you here. Everyone here will be here for you, to support you, answer questions, let you vent, etc. We will also put you in our prayers. It is a hard road you have to travel but you will get thru it. I wish you the very best. Welcome to CSN.
God Bless you friend,
debbie

Pam M's picture
Pam M
Posts: 2193
Joined: Nov 2009

Jimbo,

I, too, was diagnosed SCC Stage IV Base of Tongue, T2N2. I did induction chemo, then chemo and radiation (no surgery). Finished treatment March 16. First CT in May showed no tumors remaining. I'll have another CT and a PET near the end of this month.

So, you've done your first couple of days. Hope you're holding up well, and tolerate treatment well. Some of us don't have it nearly as hard as others.

The folks here are a great source of info and support - turn to them whenever you have a question, or need to vent or reach out.

I think maybe Scambuster, one of our members was treated in Thailand. I could be wrong - I know he's out East.

Do well - keep us updated.

stevenl's picture
stevenl
Posts: 587
Joined: Jan 2010

Hi Jim,

Glad you found your way here, but sorry about your diagnosis. Wishing you the best and a smooth ride through treatment. Keep posting here and the people here will help you with anything they can. Great bunch of folks.

Prayers are with ya,
Steve

dogsrule's picture
dogsrule
Posts: 96
Joined: Apr 2010

You can do this. I went thru 5 weeks of radiation. It's hard but doable. Hang tough.

zmoosdeen
Posts: 4
Joined: Mar 2010

You're probably in very good hands - there are many good hospitals in S. China and SE Asia. Because of NPC demographics they have a lot of experience. 5yr non-recurrence is likely 85%. Quite good, considering.

What type of RT are you getting? I'm 22/33 IMRT. Have lost much taste (temporary, they say), sense of smell is distorted (super-sensitive to some things), difficulty swallowing (mostly on Ensure), dry mouth, thick mucus, lack of energy.

I had 2 rounds of 2-week chemo before RT with concurrent low-dose chemo. That shrunk the T4 NPC down to 'not visible on MRI'. Whoopee! That helps keep the IMRT target small, with somewhat less side effects. It sounds like they're putting you straight into concurrent RT/chemo.

You're probably seeing some side effects by now. It will get worse, but is definitely survivable. Keep eating - like it or not - because your body needs the nutrition to fight the cancer, side effects, and possible related infections. Keep positive - plan on a fantastic vacation in September to reward yourself for being cured.

Good luck ! Let us know how things are progressing.

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