| Joined: Jan 2013 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2013 Posts: 27 | First - thanks to everyone for your responses...I'm so glad I can rely on you to provide knowledgeable advice and care.
Maria - it depends. I can work from home, but most projects do require travel. So, I might be able to work something out to ease back into work by working on small projects that don't require travel. Also, I was only there for 6 months, and there's huge learning curve involved, so I feel like I'll need some time just to get up to speed on the basics.
All good advice. I'm meeting with the oncologist Monday, so I will have a better picture of the treatment plan then.
There were a couple of things the nurse mentioned over the phone that I was curious about:
1. She said I should probably get a feeding tube put in either before or at the very beginning of treatment.
2. She also mentioned using something called a portacath if I need infusion. My doctor didn't say anything about infusion. He just said that over the 6 week radiation treatment, I would have three separate chemo treatments: 1 the first week, 1 the third week, and 1 in the fifth week.
Any feedback would be welcome!
Thanks, Gina
Female, age 35 SCC Stage IV, left oral tongue, 2.8 cm T2N2bM0, HPV+, Former Smoker Dx 12/31/12 1/23/13: Hemiglossectomy (1/3 of tongue) & SND Cancer found in 4 lymph nodes, 1 with ECE post surgery 1 tx Cisplatin, 30x iMRT (6 wks) TX ended 4/15/13 | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Opinions about a feeding differ with doctors, and even patients. If you already lost 5 percent of your body weight unintentionally at diagnosis or expected loose that during treatment, one may be recommended. It should be done before treatment to reduce risk of infection since if one is needed during treatment, your immune system is lowered and increases the risk of infection, and treatment may be ceased to have it surgically placed. A peg-tube or J-tube is surgically placed, but a nasal tube can be placed when needed, but some complain it is a discomfort. I had two peg tubes.
Chemo treatments are usually infused. A port-a-cath is a central venous line to infuse the chemo, instead of getting a venous line placed each time, and saves the veins from the chemo burning them up, to take blood, and deliver other meds. This too needs to be surgically placed below the colar bone under the skin near the shoulder. I had mine for three years, but is usually taken out when no more treatment is expected due to increaed risk of infection, and sterile methods are used when and after accessing. Some get a pic-line, which usually goes in the upper arm for infusions, instead.
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | The lymph node that was leaking for my wife was also only 0.7mm in diameter which baffled our doctors as well.
In regards to your two questions:
a) I would highly encourage you to stay off the PEG and try and feed orally as long as possible. If push comes to shove and things get difficult during treatment, you always have the option to get a nasal gasteric tube inserted which is less invasive.
Try and eat as much as possible NOW and put on as much weight possible because once the docs see you lose more than 5% of your pre-treatment body weight, they will recommend you get the tubes fitted in.
b) A portacath (PICC line) is great as any time you need a blood test or need to administer chemo, you do not have to get needles poked at you every time by the nurses.
As for the 3 administrations of chemo which I am assuming is just cisplatin, ask your doctors if you are able to split that to 7 smaller doses instead of the '3 big bag' as it is much easier to tolerate and basically has the same effect.
As stated in an earlier post, my wife who has just got out of treatment is a very similar scenario to yours and if you want to learn more about what we went through, there is a post below in this section that may give you some further info on what we went through.
Hope that helps.
Jay
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Jan 2013 Posts: 27 Contributing Member (25+ posts) | OP Contributing Member (25+ posts) Joined: Jan 2013 Posts: 27 | Hi Jay,
Thanks - I will definitely question the treatment method more and see if a PEG tube is actually needed. I'v only lost about 4 lbs since surgery. Also, I don't think they are doing a "three bag" chemo. The chemo is spread out two weeks apart. So, in week 1 of radiation, I will get one chemo treatment, then another in week 3, and another in week 5.
The way the nurse explained the portocath is that it goes under your skin into your chest. But, a PICC line is different, that's just in your arm. Do you know which one your wife had?
Also, I'd love to read your story - is the topic you are referencing named, "Concerns over PET scan"?
Thanks again, Gina
Female, age 35 SCC Stage IV, left oral tongue, 2.8 cm T2N2bM0, HPV+, Former Smoker Dx 12/31/12 1/23/13: Hemiglossectomy (1/3 of tongue) & SND Cancer found in 4 lymph nodes, 1 with ECE post surgery 1 tx Cisplatin, 30x iMRT (6 wks) TX ended 4/15/13 | | | | Joined: Sep 2012 Posts: 145 "OCF Down Under" Senior Member (100+ posts) | "OCF Down Under" Senior Member (100+ posts) Joined: Sep 2012 Posts: 145 | Hi Gina,
Good to hear that you are keeping your weight steady. Make sure you pack on some additional weight as it will get more difficult to eat once treatment starts.
The method for chemo you are referring to is in fact the '3 bag method' - 3 large doses of chemo spread across the duration (generally in weeks 1,3 & 5) that you receive radiotherapy. Again, ask your medical oncologist if you are able to spread the chemotherapy treatment in smaller doses across 7 weeks as the results are the same, and the body tolerates it a lot better!
My wife got the PICC line which is a bit different from the PORT but both do the same thing - no need for the nurses to poke you with needles everytime blood tests are required or chemo is administered.
My wife's story is indeed under that title (I know the title is deceiving) and you should see our story from the middle of that thread all the way up to now - 8 weeks post-tx.
You will get through this but make sure you brace yourself as everyone on this forum who has gone through treatment will testify that the radio & chemo therapy is actually more difficult than the surgery itself.
Eat lots, drinks lots & rest lots as all the nutrition you can take on board now will do wonders once you start treatment!
Let me know if you have any other questions around treatment and I'll be happy to answer what I can.
Jay
6/8/12: Wife 33y/o with no risk dx with Stage IVa SCC L of Tongue(T4aN2bM0) 3/9/12: Induced birth @ 36 weeks - Baby Hunter! 11/9/12: OP - 3/4 Partial Gloss, Radical ND & Tongue Rec. 24/10/12: 33xRad + 7xChemo 7/12/12: Tx complete 21/3/13 & 21/6/13: NED 24/7/13: SCC in Lungs - OP: Lobectomy (VATS) 29/1/14 passed away
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | Hi a peg is not a bad thing to have. As others have said the down fall is becoming dependent on it. Usually by the last few weeks things are pretty rough in your mouth and throat - aside from the mucous, and gagging, you'll have mouth sores and no taste. This all makes it brutally hard to eat and drink. I had a oeg but couldn't tolerate the feeds (I would throw up every time) so I sucked it up and chugged ensure 4 times a day with a bit of protein powder. Not a bad thing as It help keeps the swallowing Intact. A nasal tube for a week or so is not a bad thing but its a pain in the butt for longer than that.
My dr insisted I have a peg so I did. It can be a lifesaver for some, as long as you remember to swallow - even just sips of water - I was very blessed in that I have a high pain tolerance and did okay through rads. Not everyone is as lucky, so despite having it in - I did fine without using it.
Porta cath? Maybe if you are having 6 treatments, but for three? I wouldn't. it's convenient I suppose but to me three IVs I can deal with since their spread over 3 weeks. It's not like its weekly or daily, and a long term treatment. My hospital didn't even suggest it.
Best of luck.
Last edited by Cheryld; 02-03-2013 06:34 AM.
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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