| Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Just identified cancer on my gums m quite worried and still waiting for final reports that's why don't know the stage but observed change 2 months back.can any one please help me.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Welcome to OCF! Im very sorry you have a need for our services after receiving an oral cancer diagnosis. Our group is made up of patients and caregivers from all over the world. We may not always know how different countries medical systems operate but we do understand what you are dealing with and can help with info and support. I suggest start reading posts here and also read info from the main OCF site. This will help you learn about your disease and make you a stronger advocate for yourself. For starters you may want to begin focusing on your intake. Treatments for oral cancer can significantly affect a persons ability to eat, taste and swallow. This is usually a temporary change but it can take months for you to return to your pre-cancer abilities (or close to it). Your intake is of the utmost importance! Its something you have control over so start getting used to taking in at least 2500 calories every single day and 48-64 oz of water. If you are on the slim side, try taking in even more to help add a few pounds prior to any treatments. You should also get a full blood workup done including thyroid (and testosterone for men). Its important you have a baseline set of numbers before you start any treatments as its not possible to know what your numbers normally are after being treated if having radiation with or without chemo. Anyone who offers their assistance, tell them when the time comes you will let them know what they can do to help. Make sure to write everyones name down and contact info for later in case you need someone else to give them a call or text. There are many small things you could need help with during and after rads. Over the years working on the forum, Ive seen most people genuinely want to help but many dont know what they can do so dont be shy if you need help... ask. Best wishes with everything! OCF main site --- diagnosis OCF Main --- Treatments ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Got reports of CT scan and biopsy identified 19x12 mm cancer Tumour on left mandible and is soft squamous cell carcinoma at initial phase and rest body parts are not infected including lymphs . Doctor has suggested for surgery and later radio and told is 100 % curable.please suggested are we going on right direction.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | As I mentioned in my previous post, we are a group pf patients and caregivers. Please remember we do not have your medical history in front of us, medical training or text book experience. Our knowledge comes from living thru oral cancer (OC) diagnosis, treatments and recovery experiencing everything first hand. In the US our physicians adhere to the NCCN flow chart to aid them in their treatment plans. I do not know what is done in other countries. What you described for your treatment plan sounds like what many of us here have been thru. Please take some time to read some valuable info with both the link below and the links in my previous post above. Ive also sent you a private message (PM). click on the tiny flashing envelope next to the My Stuff tab. There an important link there to review too. Please use the link to follow the directions about adding a signature. It really is important in helping us to help you. NCCN treatment plans for head and neck cancers Best wishes! ChristineSCC 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 | | | | Joined: Jul 2016 Posts: 85 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Jul 2016 Posts: 85 | We are glad you found this site to help you on this journey. Christine has sent you very good, important information. Please read and study the information in the links as it will help you so much. We have all been through a journey and come here to learn and to help each other. Please do not hesitate to ask any questions here as likely someone will be able to talk with you about it. Take care and please keep us updated as to how you are doing.
Sept 2002 Rt breast cancer no chemo or radiation. March 2015 Rt tonsil cancer - walnut size lump rt side neck. March 2015 Scan, biopsy confirm March 2015 Port, G tube placed, 10 teeth removed. July 2015 completed 5 chemo/35 radiations Sept 2015 Cat Scan all clear July 2016 G tube, port still in place Ive had Thyroid "graves disease" and Lupus for many years. 4 kidney stone surgeries past 3 mo with over 100 stones still there !
*** Update... Jo passed away 12/20/17 ... RIP Jo ***
| | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Surgery done on 17 oct 2016 (Mandibulectomy) left mandibles.2 cycles of chemo cisplatin & 5-FU. first radiation on 6 Dec is planned. Quite confused about radiation technique, Cobalt 60 or linear accelarator which one to use.In my current hospital cobalt 60 is available and my oncologist told there is not much more difference between two.Please suggest.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Please understand we are a group of patients and caregivers without medical backgrounds. We also are based in the US but do have members from all over the world. Im sorry but I do not know how the medical system works in countries outside of the US.
In first post to you, I included a link for Treatments. There you can read all about radiation and the different types. There are links within the tabs to give you even more detailed information. Here is the US most radiation is IRMRT, some Proton and even fewer brachytherapy (seed implant radiation). Im sorry, I do not know what Cobalt 60 or linear accelerator are.
PS... I sent you a private message back in October with links to review. Please check your messages and follow the directions in the links to add your signature as soon as possible. We need your basic background of your history to be best able to help you. Thank you! ChristineSCC 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 | | | | 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 | From what I understand, Cobalt 60 is a type of Gammaknife, which is really stereostatic radiosurgery, and is not really surgery, but a precise form of radiation with minimal effect on surrounding tissue, which was largely used on brain tumors. Gammaknife, Cyberknife are trademarked names. Linear accelerators, most commonly used, are state of the art radiation machines, such as IMRT, IGRT, VMAT, IORT, Stereostatic Radiosurgery, that deliver customized high doses of x-rays to tumors in all areas, while sparing normal tissue. http://oralcancerfoundation.org/facts/imrt-radiation/
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: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Completed 3 cycles of chemo cisplatin and 5 FU ,now under radiation and completed 20 out of 30 rads.Feeding tube placed,lots of coughing and thickened saliva ,lost weight,sleepless.Almost all hairs are lost and few left turns white,feeling fatigue.Please advice what to feed also suffering from common cold.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | The hair loss is probably from the chemo (as far as I know, Cisplatin does not cause major hair loss, so it may be the 5 FU). All the other side effects you have listed are fairly common effects of radiation. You might want to look at rinsing your mouth several times a day to get rid of the thickened saliva. My husband used a Waterpik on its lowest setting and with some of the prescribed mouthwash. It worked exceedingly well for him.
Are you eating by mouth or are you using your feeding tube? If you are using the feeding tube your medical team should recommend the appropriate supplement for you. Here in North America there are a lot of choices. My husband was on Ensure and some people use Boost. If there is a dietitian at your hospital, it would help for you to speak to this person. Your calorie intake each day should be about 2500 to 3000.
ChristineB, the forum administrator, always recommends that patients keep themselves hydrated. Indeed, she is right. If you are dehydrated (and radiation does that to you), you will feel awful. Make sure your water intake is close to 48 oz a day. You can find out from your treatment centre if they will give you intravenous hydration if you are really dehydrated.
The effects of radiation will continue for several weeks even after the end of treatment. So, it is important that you continue to keep up the fluid and calorie intake.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | welcome to OCF! Avoid crowds and public places as your resistance is low. I know its hard right now but you MUST take in at least 2500 calories and 48 oz of water daily. If u can do more it will help you to get thru this easier.
Hang in there! We will help you. ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Thanks alot for support.
Completed chemo & radiation on 27 Jan 2017.Removed Feeding tube.Now slowly i have started taking liquids from mouth.Voice is getting clear slowly and mucus secretion getting normal.Taking calories as suggested.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | Sounds like you are recovering well. Well done!
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thanks for checking back with an update!
Recovery can be a frustrating time, it can take many months. It can be difficult with having ups and downs and some setbacks too. Radiation continues to work for several weeks after the treatments have finished.
Im glad you are focusing on your intake! That will have a huge impact on getting you thru your recovery easier.
Hang in there! The worst is behind you.
ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hello everyone,
I feel cold and little bit shivering, don't know why but from inside I feel quite warm. I don't know why but this could be due to radiation or what, please suggest if someone had similar type of problem earlier
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | You only finished your treatments less than two months ago. You may be feeling cold/shivering because your body has been weakened by the treatments and your energy level is low. I would suggest that you bring this up with your doctor if you continue to feel this way. Your doctor would be the best person to pinpoint the problem and suggest remedies.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Since you recently finished your treatments it could be related. Ive seen other OC patients have circulation issues as a side effect from having chemo. I dont know if you had chemo or which ones can affect some patients circulation. It could also be an unrelated problem like being diabetic or from taking certain medications or maybe the flu? I suggest following up with your regular family doctor. They should know you the best and know your medical history and what medications you take.
Best wishes with your continued improvements with your recovery. ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Thanks for supporting me.
Today I met with my doctor, he told me that I got infection in mandible (surgery part) and because of that I got fever and prescribed me some antibiotics and told me to meet him in coming Saturday again.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | I'm glad you saw your doctor and found out why you were not feeling right.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hope everyone doing good!
It is almost 3 months from my last radiation.Trying to recover from infection still on antibiotics.Meeting my surgeon every week for this,he told me not to worry it will heal after some time.No saliva secretion due to which chewing is not possible.Want to gain some weight badly as i lost huge one.Taking semisolid fluids by mouth no feeding tube, planning to do some physical exercise like cycling which is my favourite.
Someday i feel negative, i know i have to be positive, even though.
Now do i have to go for a PET scan ?any suggestions please
Thanks alot for your kind support and wishes.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | It may not feel like it, but you are doing quite well three months (12 weeks) after radiation. If you wish to put on weight, you can consider taking supplements like Boost or Ensure which are in liquid form and they can add to the calorie intake. (I don't know if you have Boost or Ensure in India. The supplements may have a different brand name.). Have you had a CT scan? Sometimes doctors wait a bit before they order a scan as the swelling post-radiation may mean that the scans are not that clear. Have you asked your doctor about that? Here in Toronto, Canada, doctors don't necessarily order a PET scan although it seems to be done quite frequently in the States.
Good for you that you are trying to be positive; that's really important in the recovery process.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Its great to hear for you!!! Im sorry you have had some difficulties with your recovery. When doing rads, it makes patients' immune systems low where they cant fight off even minor infections. Im sure your blood work white counts are still very low, making you susceptible to pick up all kinds of illnesses . A complete recovery takes a LONG time! It cant be rushed. Just remember... no patient ever can bounce back as quickly as they think they should.
If you have lost weight then you are not taking in enough calories. This is something most OC patients struggle with due to radiation to the mouth/throat areas affects our capability to eat and swallow. Every single day you should push yourself to take in the daily minimums of 2500 calories and 48-64 oz of water. Since you said you had a big weight loss, you need to increase your intake over that amount. Even if taking in 3500 calories daily you probably would not start to regain any weight for many months. For your own good heath and to make your recovery go smoothly, I would say to push to take in as much as possible over 3000 calories every single day until you hit your one year post rads milestone. It took me about 6 or 7 years after finishing my rads until I was able to gain any weight. Thats with some days taking in well over 5000 calories, sometimes even over 7000 calories daily. I would make and drink huge chocolate peanut butter milkshakes every day. Im not sure if your country has the same items so you could make these? Here in the US we have many different nutritional drinks available in grocery stores and pharmacies. Its even available to purchase online, no prescription is necessary. The Boost very high calorie is one of the most calorie dense drinks available with 530 calories in 8 oz. Drink a few of these per day and it will greatly help you to recover.
Not all doctors send their patients for PET scans. Some doctors avoid post treatment scans of all kinds to keep their patients from getting any extra radiation.
Best wishes with your continued recovery! ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Thanks a lot for suggestions.
Hope everyone is doing good.
As I informed you in my last post in month of April that I am suffering from infection in operating part, and still I am not able to recover it my doctor advised that it will heal after some time, but I didn't see any recovery and I am quite worried about this. Is this kind of infection is common for everyone and does it really takes this much of time to heal, or something else please advice.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im so sorry to read you are still having trouble!! If you still have an infection weeks/months after finishing rads then you should be still taking antibiotics. If you have been on them for more than a couple weeks and nothing has changed then you need a stronger antibiotic or a different one that hopefully will work on whats going on. Your doc should swab the infection and send it to the lab for testing to see exactly what type of infection or problem you are having. Then he can know how to best treat it. If I remember correctly, I think you are a few months post rads. I also suggest besides the antibiotics, your body need the fuel to recover in order to kick the infection. Radiation treatments are HARD on a patient. It takes a full 2 years to make a complete recovery. After rads, your body has been worn down so much that the only way it can rebuild itself is thru pushing yourself to take in better nutrition and calories. I know eating is NOT easy at all after rads and the sense of taste for most patients has been greatly affected. No matter what things taste like, unfortunately you still MUST push yourself to eat and drink. The daily minimums are to take in at the very least 2500 calories and 48-64 oz of water every single day right thru at the very least your first year anniversary of completing rads. Thats the minimum! For patients who are struggling like I think you may be doing, you should take in at least 3000/3500 calories daily and the same 48-64 oz of water. This must be done every single day. This will help your body to be strong enough to fight the infection and recover from all the damage rads has done.
Good luck!!!
PS.... Please add a signature asap. Going back to reread all thru your posts to figure out where you are right now isnt easy. By having a signature it greatly helps us to help you as we will instantly know where you are coming from and at what point you are in your recovery. My memory isnt always the best (lately its been awful!), after talking to so many different people over the phone and so many patients on here Im just not able to remember all the details of every member. Detailed instructions have been sent to you thru a PM or you can easily get the instructions on how to make a signature under the "New Here, Read This First" section in the Posting Etiquette thread.
ChristineSCC 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 | | | | 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 | Although rare, Osteomyelitis is an infection of the bone, since you mentioned it's in the mandible, which I had with ORN, Osteoradionecrosis. The bone can be infected a number of ways such as during surgery, and other means. Chronic conditions like diabetes can increase risk, as well as weakened immune system, poor blood supply and others, and can be acute or chronic, which the last can be difficult to treat.
Mine was found during CT scanning of the jaw for ORN surgery, one way to remove it, and was placed on antibiotics, Augmentin, once again until I awaited surgery. As mentioned, a biopsy or culture can help determine the orgasm causing the infection, and the appropriate medication prescribed. Antibiotics can be pill firm or by IV that are more potent.
Also helpful is controlling medical conditions like diabetes, adequate nutrition, as mentioned, increase blood supply, oxygenation,,and have read that HBOT is helpful with osteomyelitis, although some doctors, not all, may not advise it until there is a clear scan.
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
| | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hello everyone!
Yesterday I meet with my ENT surgeon for infection,that is still there. He has done Biopsy of scar tissue samples taken from inside lining of mouth and hopefully we got no malignant cells i.e (-VE) report.
For infection he suggested me a minor surgery which is scheduled tomorrow.
Thanks alot.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hope everyone is doing good!
finished small surgery for infection but no positive sign till date as infection is still there.
Now little bit Saliva formation starts, now my mouth is not that much dry. But Saliva is very thick sometime feels like cough don't know clearly that is Saliva our cough. My oncologist told to drink lots of water and it will be alright. Is this recovery of Saliva formation or healing does everyone feel like me?
Still on liquid diet.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | It has been six months since you finished radiation, how come you are still on a liquid diet? Do you have swallowing difficulties or is it due to the infection? Can you swallow soft food at all? What do your doctors say?
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Since you finished rads several months ago, at this point in your recovery I would expect to hear you have dry mouth, not thick phlegm. Yes, drinking extra water will help think it. Every single day you should be taking in 48-64 oz of water and having at least 2500 calories. A diet high in protein (check with your doc if its ok) will help to speed up your healing. Unfortunately, patients never recover as fast as they think they should. A complete recovery takes 2 full years after rads. The better your diet and adherence to meeting your daily minimum calories and water, the easier the recovery will be. Most patients notice slow improvements with their saliva returning around from 6 months post rads thru the 2 year mark.
Hang in there, the worst is behind you. Best wishes with your continued recovery. ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hello everyone!!
Hope everyone is doing good.
I am came back again with a very bad news..
I had a PET scan on 13 Aug 2018 after pleural efflusion on lungs doctor had drain around 2L of pleural fluid form my lung and samples were sent for analysis and all the results were negative for malignancy,but still fluid continues to accumulate on my lungs then doctor suggest me for PET scan which has shown one lesion on my left lungs and rest organs are clear. Doctors told me high possibility of metastasis.
waiting for further line of treatments.
Sorry to inform you.
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im so very sorry!!!! Take this one step at a time and hopefully this can be easily fixed.
Best wishes!!! ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | Hello everyone!!
Diagnosed with metastatic SCC of lungs.
oncologist advised for Chemo 6 cycles and informed me about poor prognosis.
Not able to decide whether should i go for Chemo again or should i leave it as it is.I googled for metastatic SCC of lungs it shows very poo prognosis with life expectancy of 6 to 12 months..
Depressed & Confused!!
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Im so very sorry!!! The newer immunotherapy chemos of Keytruda or Opdivpo have worked very well for some patients. It may be worth trying them. Best wishes with everything!!! ChristineSCC 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 | | | | Joined: Oct 2016 Posts: 15 Member | OP Member Joined: Oct 2016 Posts: 15 | I have login my father's profile to inform you that my father has lost his battle with cancer on 10/11/2018.
Thanks for supporting him throughout his journey..
Caregiver to father Hukendra Sahu
Vishwambhar
SCC,Left mandibles Stage:T2N2M0 Mandibulectomy on 17/10/2016 radical neck dissection Cisplatin/5FU -3 cycles 35 radiation completed on Jan 2017 | | | | Joined: Jun 2007 Posts: 10,507 Likes: 6 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 6 | Thank you for letting us know. Im very sorry for your loss. In time, may memories of happier, healthier times help to bring you comfort. ChristineSCC 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 | | | | Joined: Oct 2012 Posts: 1,275 Likes: 7 Assistant Admin Patient Advocate (1000+ posts) | Assistant Admin Patient Advocate (1000+ posts) Joined: Oct 2012 Posts: 1,275 Likes: 7 | I’m sorry for your loss. My condolences to you and your family.
Gloria She stood in the storm, and when the wind did not blow her way, she adjusted her sails... Elizabeth Edwards
Wife to John,dx 10/2012, BOT, HPV+, T3N2MO, RAD 70 gy,Cisplatinx2 , PEG in Dec 6, 2012, dx dvt in both legs after second chemo session, Apr 03/13 NED, July 2013 met to lungs, Phase 1 immunotherapy trial Jan 18/14 to July/14. Taxol/carboplatin July/14. Esophagus re-opened Oct 14. PEG out April 8, 2015. Phase 2 trial of Selinexor April to July 2015. At peace Jan 15, 2016. | | | | Joined: Jun 2017 Posts: 30 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Jun 2017 Posts: 30 | Wishing you strength and courage as you deal with so much grief in the loss of your father. May your beliefs sustain you, encourage your spirit and see you through this difficult time. Susan 04.12.16 1st surgery; rt partial glossectomy; neck dissection; 2/38 lymph nodes positive 05.12.16 Resected T2, N2b, M0 05.24.16 Rad, Cisplatin 10.03.16 Clear PET 04.11.17 Clear PET 06.09.17 1st recur 06.21.17 2nd Surg: rt partial glossectomy; forearm free flap; rt thigh skin graft 11.09.17 2nd recur 11.30.17 Nivolumab 02.06-16.18 Brachytherapy 06.12.18 3rd recur 06.12.18 Lt axillary lymph node SCC 07.05.18 Pain pump placd 08.23.18 Pump removd 10.29.18 PET-CT responds to treatmnt
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