| Joined: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | my future father in law is about to have both chemo and radiation start simultaneously in a couple of weeks. i assume that he is having what you are all calling CRT. Can you advise what the side effects of this are going to be like for him?
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | 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 | It may range from mild to severe depending on a host of factors including the targeted path of the radiation, the type of radiation and his personal reaction to the particular chemo(s) and the radiation. Those are things he can not control. Maintaining sufficient daily hydration and caloric intake is extremely important to how he will fare and that is something he can control.
He will lose his taste and his saliva production will most likely be severely compromised. These will recover but how much so is not guaranteed.
The inside of his mouth may blister and the outside of his skin where the radiation goes in may also blister. He may lose the hair on the back of his neck and his whiskers may fall out. The hair will return and the whiskers probably not, at least in the direct radiation path.
The chemo may cause nausea, concentration problems and both may cause total body weakness.
IMO about 10% of us get by real easy; 10% get hit really hard and the rest of us have the same rough time which in the grand scheme of things only last about 7 weeks or so ( from the 4th week of Tx until the 3rd week post Tx) and the weeks following the end of Tx are usually the worst.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | thanks david cpa- why are the weeks following the end of treatments the worst? it appears the side effects you listed above would be happening while in treatment, what happens after treatment that is worse?
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | 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 | Actually the few weeks POST Tx will most likely be the WORST part of his Tx so at least prepare him for it. He will probably get his last chemo on the last day of radiation and his body will be naturally very weak from all the previous rads and chemo and the effects of everything, physical and mental, just seem to combine for nearly all of us to make those 3 weeks or so post Tx our worst. Some say the radiation still "cooks" our cells comparing it to a microwave after you turn it off but I don't think I've ever heard a technical medical explanation but I do know after experiencing it myself and hearing from countless others on this site, it's real, whatever the cause.
I called it walking out of my dark tunnel when I finally started to feel better 3 weeks post Tx. It was like one day I woke up and I just knew something was better, like the day when you know your cold is finally going away. Even then he will experience set back days but eventually they will give way to the better days.
Also prepare him (when he's up to it mentally) that his recovery may well take all of 2 years.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | thanks david. i appreciate you being upfront and honest about what may be to come. i know theres a long road ahead.
He's going to begin chemo (Cisplatin) beginning January 4th. He'll receive 7-8 weeks of treatments once a week (on Mondays). he'll receive radiation 5x a week during the chemo treatment- is this similar to what you had? is this a normal duration of treatment, longer, or shorter than typical?
we have our wedding planned for mid september 2010. he wanted us to go ahead and book the date, because he felt it was not best to wait for him to get better to plan something. but we are waiting to officially announce it until he's at least midway through his radiation and chemo treatments. do drs typically have a better understanding of how things are going while doing the treatments, or do we need to wait until they are over to get the best decision? we want him to be OK for our wedding and told him we would reschedule it if it meant he would be there and comfortable.
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | 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 | No there is no way to predict anything during Tx. Heck I was more fearful of my Tx than I was of the cancer and I was one sick puppy for about 7 weeks (4th week of Tx thru 3rd week post Tx) and I was one weak kitten for about 3 or 4 months post Tx and looked like someone starving themselves. By 9 months post Tx I was back to riding my bike as if almost nothing had happened.
All of us can react differently even to the same Tx so he will be what he will be. I strongly recommend you keep after him on the calories and hydration fronts at least thru his first year post Tx. I was consuming 3000 cals a day in my first year post Tx and I didn't gain back ONE POUND.
I will say that I would have been able to fully function (in all ways and things)in my wedding 6 months post Tx so I would vote go for it.
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: Nov 2009 Posts: 76 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Nov 2009 Posts: 76 | thanks david. you are such a great person to talk to on here. i really appreciate all you help!!! i am so glad to know you made a good recovery. i am praying for the same for my family.
*KATIE* future FIL dx with s4 SCC in jaw11/09 15 hour surg/trach/PEG in. 7 weeks of cisplatin/rads. 6/10- cancerous lung nodule- 1 wk of radiation. 8/13 pneumonia. 8/24 pulmonary embolism, on ventillator. 9/3/10 died peacefully w/o pain with family. 9/17/10 my wedding
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Palm,
Your FIL sounds very similar to my scenario, however my medical team wanted to shrink/kill my tumor before surgery so that the surgery was "less invasive".
After 3rounds of cisplatin and concurrent radiation my tumors in my face (which originally took up almost the right half of my face) and lymph nodes were well below malignant levels. My surgeon called and asked me if I still wanted to do surgery...looking back I know I made the right call in having the surgery done as it lowered my chances of a recurrance...it did however paralyze the right side of my face and severely affected my speech and swallowing.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Nov 2009 Posts: 5 Member | Member Joined: Nov 2009 Posts: 5 | My mom is 72 years old. She has stage IV cancer of the lower gums and a month and a half ago had surgery to remove the lower gum and part of her jawbone and at least six lymph nodes that had "caught" the cancer. Her recovery from surgery was difficult to say the least and she is just beginning to feel better now when they want her to start chemo-radiation, much like you've all described here. She's fairly determined not to do the radiation/chemo. Does anyone have any thoughts on this decision given her age and your own experiences with recovery and life after radiation/chemo treatments? I think she'd be happier with one more strong year than with two years of recovery and another so-so two years after that...
I'm sorry for all of you that have to go through this. It takes so much courage and strength. Any insight would be much appreciated.
daughter to Julie, 71, lower gum cancer patient, bilateral dissection, removal of lower teeth and gums, several lymph nodes and right lobe of thyroid gland 11/17/09. Recovering in ICU.
| | | | 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 | Toetug,
The surgery may or may not have removed all the cancer and cancers that start in the mouth as you have described have proven to be difficult to get rid of even after a course of chemo and radiation. There is no guarantee, with or without, the concurrent chemo/rad that she will be cancer free but she will statistically have a better chance with it than without it. This is something that needs to be discussed with her RO as there can be many issues that will play into a potentially life altering or life ending decision.
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.
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