| Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Nice post Charm!
My house has termites. I had the guys with the nasty spray and bag come over to deal with it. I've already had to take all my food out of it, bag everything that might absorb and hold the poison, rent a motel room for two days, and more. What pain in the ass. At the end of the process, the guys came back and told me that they didn't calculate the volume of the house properly and they would have to leave it bagged for another day and do another additional treatment.
After all that I have been through, do you think I am going to take a chance that there wasn't enough bug juice to kill all those little buggers, and a year later they would just bloom again, maybe even leaving this worse than they are now. And of course some of them will become resistant to the poison and it won't work on them at all? And I would have to go through the whole process all over again, only this time I might have to replace my whole roof because the little guys had a whole year to prosper and to undermine it? Not a chance. I'm going to do it right even if it is a bit more pain in the ass.
The consequences, especially since they have been doing this for years, and they know how much bug poison it takes to kill them all for sure, since it is well calculated and been proven on thousands of houses before mine, by lots of other bug killing companies. I'm going to tough it out..... that's what logic dictates even if there appears to be an easy way out today, ( I mean they probably got them all right? And wishfully, since I am miserable, I really want to believe this is really just overkill) and I really hate this process. What about you?
My radiation treatment side effects didn't really get the worst till 3 weeks after the end of treatment. Since you are going to have a long recovery period, stick out things and get the full treatment the way it was designed from looking at what happened to thousands of patients before you. It isn't going to shorten the crappy recovery symptoms that you are going to have for weeks to come anyway.
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. | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | Senior Patient Advocate Patient Advocate (old timer, 2000 posts) Joined: Sep 2006 Posts: 8,311 | In my case the locations of the beam and the duration of the sessions changed as we progressed until the last week was only focused on one location and my session was brief compared to when I started.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Sorry to be so long in posting back to you all, but I have spent a lot of time sleeping because then I don't feel the pain. Yes we are finishing my last two treatments. I had one today and the last one will be on Friday. I agree that it is the best thing to do and was having one of those low moments when I wanted to quit. I try hard to stay tough, but I am by myself and sometimes I let all of this get the best of me even though I try so hard not to.
The doctor gave me a product called Dromboro and I have been putting gauze soaked in it on my neck every three hours for the past few days and following that with a cream called Biafine. The Dromboro is an astringent that is sold over the counter and states that it is used for things like poison ivy to dry it. It has dried up my neck and the relief from the burning was pretty close to immediate. The Biafine is making a yellow crust on my neck that the doctor says is my skin healing. I know that if I try to remove the yellow crust my skin bleeds so I don't do that. The doctor was very happy that my neck was now dry and seemed concerned that it was so wet on Monday. Does anyone know why? Everything that I read prior to radiation both times said that I wanted to keep the skin moist with the lotions that they gave me. Previously they had me using Aquaphor which is like Vaseline.
The good news is that it does feel better in some ways - it is not burning, but the stiffness in the skin is not too comfortable and I am trying to continue to excersise my neck and mouth so that they don't stay stiff. The best news is that I only have one more treatment to go. Thanks for letting me know that it will not get better right away so that I don't get my hopes up.
Pete how is the new PEG???
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Mar 2008 Posts: 404 Likes: 2 "OCF Down Under" Platinum Member (300+ posts) | "OCF Down Under" Platinum Member (300+ posts) Joined: Mar 2008 Posts: 404 Likes: 2 | Patty
Very glad to hear that you are feeling better. You have done well and you are just about there. 1 more to go and then that is it - the end of the radiotherapy and onto the recovery part.
No one would blame you for wanting to quit - I know that I wanted to quit before I even started.
After my daily treatments I would often come home and just collapse on the lounge suite to rest, lots of people do that, it takes so much out of you.
Karen
46 yrs: Apr 07-SCC 80% entire tongue removed,T4N1M0 Neck/D,Jaw Split, Trache 2 ops,PEG 3.5yrs 30 x rad,6 x Cisplatin, 30 x HBO Apr'08- flap Recon + ORN Mandibulectomy (hip bone to reconstruct jaw) Oct'08 1 Plate out-jaw Mar'09 Debulk flap Sep'09/Jan&Nov'10/Feb&Jun'11/Jan&Jul'12/Oct'13/April'14-More surgery
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Thank you for the encouragement Karen. I look forward to being on the recuperation side of the radiation. I had very few side effects the first time so this has been all new for me.
Patty
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: May 2002 Posts: 2,152 | Biafine is a marvelous cream and should heal up the red skin fairly quickly. When I used it, they said it could not be used on open wounds. The Aquaphor never did anything for me. Biafine is also a deep wound healing cream so good on neck dissections. Glad you decided to finish and are almost done.
Tkae care, Eileen
---------------------- Aug 1997 unknown primary, Stage III mets to 1 lymph node in neck; rt ND, 36 XRT rad Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND June 5, 2010 dx early stage breast cancer June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Mar 2008 Posts: 3,082 | Good1 ah, the old "yellow crust" - despite it's appearance, is a good sign. I can only speculate about your doctor's concern, but my team had worried when my neck was not what I would call "wet" but more oozing and when the neck skin does heal up it won't be "wet". I still slather on the moisturizing cream every day over a year later. I just ran across some photos taken of my skin around a similar timeline to yours and my skin was REDwith partial overlays of yellow crust. Very glad to hear your doctors are helping out. My radiologist's nurse started me on the Vigilon with free samples. It will get better and better 65 yr Old Frack Stage IV BOT T3N2M0 HPV 16+ 2007:72GY IMRT(40) 8 ERBITUX No PEG 2008:CANCER BACK Salvage Surgery 25GY-CyberKnife(5) 3 Carboplatin Apaghia /G button 2012: CANCER BACK -left tonsilar fossa 40GY-CyberKnife(5) 3 Carboplatin Passed away 4-29-13
| | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Thanks Eileen and Charm. Today was my final treatment!!! I am so glad to be finished with this part of the journey.
There is a lot of yellow crust and the nurse at the Cancer Institute said that it was a good thing today. It has been a little difficult to get questions answered over the holidays and I have chosen to be asleep most of the time so that I don't have to hurt. It is interesting that we use a lot of the same products that patients in the burn unit use.
I am now looking forward to healing and moving forward with my speech therapy and swallowing therapy next.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 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: 7 | Patty Congrats on finishing your treatments. Sleep is good for your healing. Dont forget to get your nutrition and minimum 48 oz water daily. Those 3 things will help you to heal faster and in about 2 or 3 weeks you will start to feel so much better. Hang in there, the light at the end of the tunnel is almost visiable now. 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: Sep 2008 Posts: 489 Platinum Member (300+ posts) | OP Platinum Member (300+ posts) Joined: Sep 2008 Posts: 489 | Thanks Christine. I am getting very good at getting a lot of sleep. The Biafine crust is a little less this morning. And yes Eileen I do notice that my neck scars look better!! CHARM - I was wondering what type of cream do you put on it after it heals. The nurse said to stick with Lubiderm or Ucerin and of course hihg spf sunscreens.
Last time I had radiation it was a very light dose. I worked through it at a very high stress job that was a minimum of 60 hours a week. Maybe I survived on the stress. I had some redness but nothing severe and I was eating fried chicken right at the end of my treatments. Of course last time the radiation did not stop this new tumor from developing either so I will take the side effects if it keeps this monster out of my life.
Enjoy your day. Has anyone heard anything on Pete? I know that after my surgery they kept me asleep for 8 days so there may not be much news for a bit, but I think of him often and miss his sense of humor.
48 SCC Floor of Mouth 7/06 9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx 35 rad 2006 Recurred 6/08, 1 Carboplatin, 1 Cisplatin Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula 35 IMRT & Erbitux 11/08 4/15/09 recurrence 6/1/09 passed away, rest in peace
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