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#191995 03-14-2016 04:16 PM
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Amygh Offline OP
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Just had my Partial glossectomy and modified neck dissection on Friday and I feel like crap! How fast does this healing take? I haven't had any treatment besides this so far but at this point I'm feeling like a can't handle anything more. If my nodes are positive for cancer I dont think i can endure radiation. Feeling very discouraged and depressed. My neck makes me think of Frankenstein and my tongue is so swollen and numb it feels like a piece of meat in my mouth.

Any advice?

Amy


Diagnosed with squamous cell on tongue in Feb.2016; clear CT scan showing no visible involvement in nodes or lungs; removed 30% of tongue on March 11th; whole left side of head numb. Non-drinker, non-smoker; very healthy person nut under stress from caring for 2 parents with dementia; Dad died last June and sore started in August.

Last edited by Amygh; 03-14-2016 04:22 PM.

47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192002 03-15-2016 07:55 AM
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Hi Amy,

Sorry to hear that you're feeling discouraged. From my perspective & knowing how I felt after my own surgery, I'd say you're doing quite well, if you're already able to log onto a website & type out a coherent post like this. Three days after my surgery, I was still pretty much out of it, with a nasty tracheostomy that needed a lot of attention, oxygen tube, nasal feeding tube, IV, catheter, and heavily bandaged basically immobilizing my wrist, thigh and neck (where the flap, skin graft and neck dissection sites were located).

You've gone through a fairly significant surgery and it's going to take some time to heal. If your team of doctors decide that you'll need some radiation to make sure that there's no sneaky little cancer cells hiding out at the margins of the portion of your tongue that was removed, they'll probably wait a couple of months to begin.

So what can you do in the next few weeks? Well, rest up, let others take care of you for once & try not to worry too much about what may or may not happen. Everyone has a slightly different experience & different difficulties with the healing process. I hope it goes well for you. After I got out of the hospital, I recovered pretty quickly and got back to the new normal in reasonably short order, with minor setbacks when I had the radiation treatments. It didn't keep me down though. Keep fighting!


Dx 2014Jan29 (42 yr old otherwise fit nonsmoker)
SCC tongue stage III T3N0M0
subtotal glossectomy, partial neck dissection, RFFF, trach, NG tube 2014Feb25 16 days in hospital
RAD 25 zaps 2014May5-2014Jun9
Back to work, paddling & hiking shortly afterwards
Amygh #192003 03-15-2016 12:04 PM
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Welcome to OCF, Amy! I know surgery is horrible and afterwards you feel lousy. It seems like the swelling just doesnt go down. Your surgery was only a few days ago and it was a very involved complicated one. Unfortunately it takes a good couple weeks for it to really subside. Always remember, everyone is different and will recover at their own pace. Best thing you can do is to listen to your doctors and ask them if they have any tips on how to help with the swelling. Maybe cold compresses on your neck/throat areas would help? Make sure your pain is managed as that is just unneeded stress that you definitely do not need right now. There are many members who have undergone similar surgeries. Im sure some will chime in and pass along some tips to help make it easier.

(((HUGS)))


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Amygh #192004 03-15-2016 05:05 PM
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Now I can't keep any pain meds down and vomiting over my swollen sore tongue is terrifying and painful. Haven't eaten anything except two cups of broth in 4 days. Doctor prescribed an anti-nausea drug so hopefully that will help. I'm nearing my breaking point here. If I need another surgery I won't do it. I would rather die.

Amy

Last edited by Amygh; 03-15-2016 07:59 PM. Reason: Adding signature

47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192005 03-15-2016 05:13 PM
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Amy - I can't imagine what you're going through. You're already a hero in my estimation, so please hang in there. Everyone here is now part of your family and we're all pulling for you. I hope the anti-nausea stuff works, they have some great drugs for that these days.

Keep coming here for support. We're with you!


David 2
SCC of occult origin 1/09 (age 55)| Stage III TXN1M0 | HPV 16+, non-smoker, moderate drinker | Modified radical neck dissection 3/09 | 31 days IMRT finished 6/09 | Hit 14 years all clear in 6/23 | Radiation Fibrosis Syndrome kicked in a few years after treatment and has been progressing since | Prostate cancer diagnosis 10/18
Amygh #192006 03-15-2016 06:49 PM
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Amy, awwww I am so sorry you are having such a difficult time. We will help you as much as possible so please check in often and ask questions or voice concerns. We all understand what you are going thru. We have been there too and its absolutely horrible!!!

Do you have a feeding tube?

Are you still in the hospital?

There are anti-nausea suppositories. I know it sounds yucky but when you are sick and cant keep anything down it will do the trick. Im concerned about throwing up and the stitches in your mouth being disturbed.

Ask your doc for different pain meds. Make sure he understands you are nauseous and having major issues with keeping anything down. Maybe you could get the fentanyl patch. This gets changed every 72 hours and this would help keep you comfortable without worrying about throwing up.

With your intake being next to nothing Im sure this is starting to play a part in how lousy you feel. When malnutrition and dehydration hit together it makes you feel like you are dying. Its happened to me a couple times and I was really scared I was going to pass away.

If you are out of the hospital, maybe get someone to pick up some boost or ensure. If you can drink broth then you probably can handle these things so you can get some vitamins, protein, and calories in. Everything that comes out must get put back or dehydration can quickly sneak up on you. If you find boost or ensure a little too thick then try getting the new juice nutrition drink. Im sorry I cant remember which brand boost or ensure but its a 4 pack and blue that can be found in almost any pharmacy or grocery store. That liquid is thin like broth and has much needed calories.

If you are home and this situation is the same tomorrow you should call your doc and go in to get checked. Or if things continue and you feel horrible, a trip to the ER might be a better option than waiting to get into see your doc. Maybe your doc could prescribe you a few bags of IV fluids to help keep you from getting dehydrated.

Please check in and let us know how you are making out. You're family now and we take care of our own.




Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
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Thank you Christine,

I'm home now and just got some anti-nausea meds so maybe that will help (?). Food just tastes terrible as the sensation is coming back into my tongue and it's still so swollen I feel like I'm choking. I can drink maybe a tablespoon at a time and now even water tastes bad. I'm so afraid of getting dehydrated.

I could drink Boost yesterday but today it tastes terrible and it's hard getting down any at all. I'm also nervous about becoming addicted to the Oxycodon.

Having a terrible time but appreciate all of the help offered,

Amy


47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192012 03-16-2016 05:10 AM
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Amy,

You ned to be made more comfortable in order to heal - now is NOT the time to worry about addiction to pain meds. Do you have someone with you? Between the pain, nausea & anxiety, thinking through what to do for yourself might be too difficult right now. Is there someone to advocate for you and get someone's attention about your situation?

You need to talk/see someone on the medical team today and not wait any longer. It doesn't even have to be your surgeon, if that is a problem. Someone on the team, nurse, nurse practitioner, physician assistant, etc. You need to at least be evaluated for pain, nausea, and certainly dehydration. As Christine has said, if that is not possible, the ER can give fluids and medicine in an IV. Please do not wait any longer at home.


CG to husband, dx @ age 65, nonsmoker/social drinker. Dx 5/08 SCC Stage IV, BOT T1N2aM0. 33 IMRT - completed 9/12/08. Induction Chemo (Cisplatin, Taxotere & 5FU), plus concurrent Cisplatin.
1/09 PEG removed; 5/09 neg PET/CT; 5/10 PET/CT NED
Dental extraction & HBOT 2013; ORN 2014; Debridement/Tissue Transfer & HBOT 2016
Amygh #192013 03-16-2016 05:17 AM
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Ok, that explains why you are struggling. Do you have anyone with you that helps you take care of yourself? If not, please try to get a friend or relative to pop in at least 2 times a day to help you. During recovery, when your body isnt getting enough calories and fluids, you can quickly tire and feel exhausted just getting up and down to use the bathroom. Are you able to talk so you can call your doctor? If you can, call and get the doctor to write you a prescription (tell them you need at least 2 bags of IV) to go to the hospital and get hydrated. After 2 or 3 bags of fluids you will feel so much better!

Try picking up some of that ensure juice. I get the blueberry/pomegranate which isnt too acidic and has a surprisingly good flavor. Most pharmacies or grocery store carry this.

Ensure juice


PS... Im sending you a private message (PM). Look towards the top for a tiny flashing envelope to click on to get your message.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Amygh #192018 03-16-2016 09:13 AM
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Amy,

I've been where you are nearly 11 years ago. Take the pain meds - they will help you with eating and healing. Take a day at a time. Focus on getting liquids and nutrition. I found that frozen ice (such as Rita's) was great for my swollen and painful tongue. Everyone is different, and it's been many years since my surgeries (had 4 on my tongue), but I believe the swelling was down within 1-2 weeks.

Both my parents developed dementia after I was diagnosed with OC, so I know what you are going through. Sorry to hear about your father. Can anyone help care for your mother? It is very difficult to be a caregiver to someone with dementia when you are dealing with your own health issues.

And welcome to OCF! There is a lot of great information on the website and this forum.


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Amygh #192026 03-18-2016 11:49 AM
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Hello All,

Was going to begin HBC dives until my oncologist said HB therapy helps spread cancer cells. This goes against everything I've read but now I'm confused! I scheduled an appt for HBC and Vit C IV tomorrow because it seems like the oncologist was just not encouraging something they can't offer.

Thoughts?

Amy


47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192027 03-18-2016 11:59 AM
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There is much debate about HBO. Ive done it many times successfully and found it has helped me tremendously. If you havent done radiation then Im surprised you would need HBO as its usually for those OC patients who have compromised healing capabilities after rads.

Main OCF pages... HBO


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Amygh #192034 03-18-2016 08:57 PM
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Amy,

I'm confused - what are HBC dives/HB therapy? Are you referring to hyperbaric oxygen therapy (HBOT) or something different?

Many OC patients undergo HBOT (myself included) but it is typlicaly after radiation because of damage to your jaw bone and healing issues.

From what I've read HBOT is not recommended if you have (or may have) active cancer cells as it is believed that the increased oxygen feeds the cancer cells (which you don't want).

Who recommended this treatment?


Susan

SCC R-Lateral tongue, T1N0M0
Age 47 at Dx, non-smoker, casual drinker, HPV-
Surgery: June 2005
RT: Feb-Apr 2006
HBOT: 45 in 2008; 30 in 2013; 30 in 2022 -> Total 105!
Recurrence/Surgeries: Jan & Apr 2010
Biopsy 2/2011: Moderate dysplasia
Surgery 4/2011: Mild dysplasia
Dental issues: 2013-2022 (ORN)
Amygh #192038 03-19-2016 04:46 AM
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As with Susan, I was also wondering who ordered HBOT, assuming HBC was meant the same, since the MO didn't recommend. I know it's used for many medical conditions and injuries, some which are controversial, as Christine mentioned, but it's expensive, and some insurances may not approve it for certain conditions, but it's usually approved by most to help prevent ORN, Osteoradionecrosis, with the Marx Protocol.

I've seen older studies in regards to wether HBOT can spread or cause cancer recurrence, basically from "angiogenesis." Newer reports say no, but most have a caveat that it hasn't "statistically" shown to cause recurrence, but further studies are needed. Some others say it's possible, and another said it actually reduced cancer recurrence.

Anyway, I had HBOT, twice. The first was in 2011, three months after I finished radiation to have a tooth extracted after a clear scan. HBOT was briefly interrupted halfway for a day or two after being hospitalized because I needed a blood transfusion. I don't think I respond well to oxidative stress, chemo and radiation included. The treatment knocked me out, and was like going to radiation treatment every day all over again, and would go home and sleep 4-5 hours after. About a month after I finished, I had a cancer recurrence. Wether the recurrence was related or not, it's not something I wanted to do again, and was always in the back of my mind.

The 2nd HBOT was in 2014 before I had all my teeth extracted, after waiting two years, since I was basically in continuous cancer treatment since my last time with several more recurrences, and all my newer doctors; Oral Surgeon, ENT, 2 Radiation Oncologists, 2 MO, all said I needed to have a clear scan, I actually had two, with no signs of cancer, before HBOT was done.

As mentioned, it knocked me out, maybe it helped briefly with trismus, but otherwise I felt no added benefit, and it didn't help prevent ORN, didn't help the lymphdemia, and it worsened my neuropathy, balance, tinnitus, and vision, but maybe some of the benefit was unseen, but the main reason it was done was to help prevent ORN.

Good luck.


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






Amygh #192047 03-19-2016 05:52 PM
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Thank you Susan,

Thankfully my Mom is living in s very beautiful group home just minutes away from my house so I have the reassurance that she's in good hands. My gamily is visiting her until I heal more (i havent told her sbout thr cancer, thetes no point).I'm so sorry about your parents. You and I are in a special horrifying club with both parents suffering from that damn disease.

Did you find it almost painful when sensation begins to return to your tongue?

Thank you for the welcome and know I'm here for you too 😀

Amy


47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192053 03-19-2016 10:23 PM
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New level of pain today. I'm getting these sharp pains in my face, jaw, and neck. I think the nerves that were damaged are starting to heal but it really is excruciating. It feels like im being electrocuted. I'm even getting what seems like referred pain on my left shoulder. I've taken the meds today properly but it's even harder to drink water and stay hydrated because I have a sore throat on the side where he took a piece of my tongue. If I can possibly sleep I wake up with a total dry mouth and throat which hurts like crazy. This sucks!!!! I'm 8 days out of surgery and thought I would be seeing some improvement by now.

When will this improve?? Going insane!!!

Amy


47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192064 03-21-2016 02:23 AM
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Eight days is not long. For my tongue surgery I was in hospital for two and a half weeks. You obviously still need a lot of pain control medication. I found the pain would die down and then flare up again. After my last surgery I was fine during my last days in hospital and then had a major flare up of pain after I got home and had to go to A&E to get it sorted out. I was not taking my medication properly. One they explained how to take the meds I was fine and eventually of course I could come right off them. I'm talking 2 - 3 weeks.

Good luck!


1996, ovarian cancer surgery + cisplatin and taxol.
September, 2007, SCC of left lateral tongue. Excision.
October, 2009 recurrence in scar tissue, T1NOMO. Free flap surgery from left wrist - neck dissection. 63 year old New Zealander. No chemo, no RT.
February, 2014. New primary in left buccal mucosa. Marginal mandibulectomy, neck dissection, right arm free forearm flap. T1N0M0 but third occurrence and some areas of concern: RT started 8 April and finished 19 May.
Amygh #192082 03-24-2016 08:34 AM
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Pathology is in. One node tested positive for cancer and it had erupted so I may or may not have cancer in my neck. Surgeon recommends chemo and radiation but I'm not sure I'm on board with this option since I could be compromising my immune system for no reason. The level of radiation would be less than if there was proof there was cancer.

Thoughts?

Amy

P.S. - I'm doing HBO treatments and Vitamin C IV three times per week

Last edited by Amygh; 03-24-2016 08:37 AM.

47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192083 03-24-2016 09:49 AM
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Gosh Amy, I am so sorry to hear you will need further treatment. Rads isnt easy but its doable, especially if your focus is on your intake.

Im still unsure what the reason behind your doing HBO is and how Vitamin C IVs will help. Ive never seen a patient going thru rads and doing HBO at the same time. There has been many articles about HBO not being used on patients who may have active cancer cells. Cancer loves oxygen and HBO is pure oxygen. Please talk to your physicians in depth about the HBO and your situation. Also talk to them about the Vitamin C IVs. Im not familiar with any of our members doing Vitamin C IVs in conjunction with HBO, rads and chemo. Certain vitamins will interfere with rads and chemo so make certain all your physicians are on the same page with everything you have going on. Having cancer is hard enough, you dont want to do anything to make it more difficult to treat.

If you havent had a second opinion you may want to seek one out. If you can go to a Comprehensive Cancer Center (CCC) all the better. All the specialists get together using a team based approach and discuss each individual to come up with the best treatment plan. Everyone works together to ensure there is no miscommunication. Even the patient is able to attend the tumor board meeting.

Best wishes with everything!



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Amygh #192084 03-24-2016 10:34 AM
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Hi Christine,

The HBO treatments are for wound healing and in combination with the Vit C IV's it actually helps stop cancerous growth. From everything I've read, cancer thrives in anaerobic environments, not oxygen rich environments. The Naturopathic clinic I use has been using HBO to treat cancer for years and years. High levels of Vit C have also been studied for its cancer fighting abilities. The HBO chamber helps "push" the Vit C into the cells.

I've also been to a Naturopath who is also an Oncologist and she also recommends HBO to help healing and fight cancer. I'm not just doing this because I'm ignorant. Ive gotten three opinions so far. I've read over and over about cancer dying in oxygen-rich environments. This forum is one of the first places I've seen the opposite but most people on here are not into trying anything but conventional treatment. I'm not on here to convince anyone or argue ,(don't have the energy for that anyway), I'm just looking for as many different perspectives, especially given the fact that I may be killing my immune system with chemo and radiation for nothing. Even my surgeon told me that i may not even have camcerous cells in my neck but the radiation itself could cause cancer, make me lose teeth, etc. I don't take this lightly and I'm not into just doing everything my surgeon tells me to. Doctors don't know everything.

Amy

Last edited by Amygh; 03-24-2016 10:38 AM.

47-year-old Healthy active person, non-drinker, non-smoker.
Feb 2016 - Diagnosed with SCC on tongue, CT scan indicated no visible spread, non HPV-related
March 11, 2016 - 30% of tongue removed, all nodes on left side of neck.
March 23, 2016 - results found cancer in only one node but it had erupted. May or may not have cancer in the neck but am not doing the chemo/radiation route unless it's my last option. Will try naturopathic methods first.
Amygh #192086 03-24-2016 07:10 PM
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Hi Amy, I'm sorry to read of your pathology re the positive node . Having it spill into the neck is not the best news.
I have been on this board for a few years now. Non HPV oral tongue cancers are aggressive and need to be treated aggressively. Hit this hard so that you dont have to be doing this again when your options may become more limited.
We live in New Zealand and our team told us that HBO would accelerate the growth of any remaining cancer cells. Certainly my reading confirmed that. Enough so that we opted not to do it.
Please get a 2nd opinion from a CCC as Christine advised. Research has proven that these centres achieve better outcomes for their Patients.
We have been through this twice ourselves and I don't wish that on anyone.
I wish you the best with your treatments.
Tammy


Caregiver/advocate to Husband Kris age 59@ diagnosis
DX Dec '10 SCC BOT T4aN2bM0 HPV+ve.Cisplatin x3 35 IMRT.
PET 6/11 clear.
R) level 2-4 neck dissection 8/1/11 to remove residual node - necrotic with NED
Feb '12 Ca back.. 3/8/12 total glossectomy/laryngectomy/bilat neck dissection/partial pharyngectomy etc. clear margins. All nodes negative for disease. PEG in.
March 2017 - 5 years disease free. Woohoo!
Amygh #192087 03-24-2016 08:26 PM
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Amy, Im sure you have done your research to select your treatment team. You said you went for 3 opinions. Were any at a CCC?

At this time the only scientifically proven ways to eliminate SCC oral cancer is thru surgery or Radiation with or without chemo. Alone chemo may shrink the tumor but it doesnt completely eliminate it which is why chemo alone is used for palliative care.

Have you ever heard of the Quackwatch website? Quackwatch is exactly as its name implies, it publishes false medical claims. Unfortunately many of these false claims are promoted by physicians who are very convincing and make them sound enticing. Over the years of working with The Oral Cancer Foundation, Ive seen far too many good patients who follow some of the unfounded false medical advice. Sadly many of these same patients decided too late to go with conventional treatments. Here at OCF, we only promote scientifically proven methods and clinical trials done at reputable facilities. I always look out for our members and go strictly by the rules where false cures are not at all supported. I sincerely hope your physicians have your best interests in mind when making their treatment plans for you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
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 xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Amygh #192096 03-25-2016 03:03 PM
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Amy, I have been watching your thread, and I am a little concerned. Clearly you have given this lots of thought, done some reading, and are on a path. But as someone who has talked to hundreds of patients over the last decade, I can't say that I have every seen a patient successfully treated with O2 treatments and Vitamin C. If you are like most normal people, the idea of being radiated is really scary, and heaven knows it is no walk in the park as anyone here can tell you. But it is the thing that actually works, especially in cases where the disease has already spread to the cervical nodes where it can continue on to other parts of your body. Once that happens this thing can be unstoppable. I am concerned that it sounds like you are reading naturopathic web sites and others that have not been vetted and would not stand up to the rigors of a real scientific inquiry. The web is a dangerous and wonderful place both. But figuring out which parts of it are which can be difficult.

It would also be normal human nature to try and seek out something that seemed less invasive, less hurtful to go through to get to your goal of being cancer free. I have seen people chose unproven treatments presented to them by someone who is not a trained certified oncologist by a national organization of reputation, and in the end by the time they figure out that what that person is suggesting to them is not working, it is too late to get on the right track and stop something that is very aggressive. Holistic approaches to treating cancer can be adjunctive to conventional treatments, but they have never been proven to be something that could replace them.

Clearly you can see that the people on this forum are concerned and want to be helpful, but you have to make good choices, and many of them are hard. None of us had any understanding of cancer when this came into our lives. All of us were scared, emotionally torn, and afraid of the treatments. But there is a system in the US that carefully looks at what works in different cancers to resolve them and what does not. Respectfully, I am concerned that you are being seen by someone who is not part of that certified oncology community and they are suggesting things to you that may not have the positive outcome that we all hope you have after you dance with this devil of a disease. Most importantly everyday that you do not engage in treatments that have a proven documentable track record, the cancer gets strong and harder to eliminate.

I would be happy to talk to you personally if you like, see that you get referrals to other cancer centers that have stellar track records of beating this thing that can be documented, anything that you wish. I hope that you will consider that sometimes the easiest pathway, may not be the most successful pathway.

I hope you believe that this posting which I have refrained from making for awhile, comes from a place of care, concern, and desire to see you have the best possible outcome. I think what you are choosing, and what is being said to you by whomever is treating you is not going to be effective. I hope that you will give any of us here, and me specifically, an opportunity to help you get alternative opinions from people you can trust. With those alternative ideas, perhaps you will chose a different path while there is still time to do so. With concern and love. Brian


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
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