| Joined: Oct 2013 Posts: 69 Likes: 1 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2013 Posts: 69 Likes: 1 | Everybody above posted all good stuff. Your experience is very familiar to me as well. Base of tongue started in my tonsils spread to the lymph nodes... Shouldn't this be going faster? What can i do to accelerate the process and all that. As noted above the delays feel huge, but they are really insignificant in the grand scheme of things.
One of the benefits is you can eat whatever you want. Ice cream was a focus food group for me until I couldn't stand the taste of dairy. That may have been an effect of chemo. Not sure what your treatment plan is. Become familiar with smoothie devices. I have a Nutribullet that I still use. Various recipes are out there for all kinds of tastes. Shrimp was a good food throughout treatment for me. It's soft and didn't hurt my throat so much. Funny that at some point chicken felt comparatively abrasive.
Regular walks are good emotionally and maybe clinically. I ran for a while and biked for a while, but eventually just walking kept my spirits up.
Emotionally things settled some for me once treatment started. Just committing to a plan helps. The roughest time for me was oddly just after treatment ended.
I worked through most all of my treatment. I did take a few days off mostly late in treatment usually related to chemo. I think I took some vacation time toward the end because I was just worn out.
It's not a club anyone wants to be in, but you're in good company.
Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45 Started in my tonsils and spread to my lymph nodes Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
| | | | Joined: Jun 2017 Posts: 14 Member | OP Member Joined: Jun 2017 Posts: 14 | My doctors did a battery of blood tests, but I'll ask. My blood tests on Friday came back normal, but I'm slightly anemic (which I knew) so more protein for me. They told me it is ok to eat desert. I love pie. They give me blood tests ever time I come in. More blood tests Chekov. That is an obscure original Star Trek reference. I will ask my doctors your question, which I so appreciate. I break down in gratitude for the support you are giving me. This will not be forgotten. My wife is amazing. My family, including my wife's family, is supportive and I have friends I don't deserve. I want to run away to northern New Mexico and live in an adobe house, but the work is the work. I'm back in court tomorrow. I'm an attorney, not a defendant. Ha! Please keep the advice coming and as I learn more I hope to become a resource on this site. Philip.
Philip
| | | | Joined: Jun 2017 Posts: 14 Member | OP Member Joined: Jun 2017 Posts: 14 | Thank you for advice about the waiting. I hope to start treatment by the end of this month or early July. It is difficult not to second guess myself because I should have been on this in March. Walking sounds like a good idea. I'm thinking that getting a Netflix subscription might be a good idea as well. Philip
Philip
| | | | Joined: Aug 2012 Posts: 214 Likes: 1 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2012 Posts: 214 Likes: 1 | Philip, Sorry to here about the diagnosis. Dang HPV got me to, almost 5 Years ago to the day. The good part is that is was 5 years ago. That being said. Treatment, is down right brutal. Standard treatment is 7 week of radiations with 3 big bags or weekly cisplatin. Weekly seems to be easier, Those who try 3 big bags don't always get the third dose, I did not. My standard spiel is that there is about 6-8 week of hell. During that time your ability to do the things you might normally do may become extremely difficult. Cutting grass, taking out garbage, work on home, cars, ......... at least for me, that all stopped. My advice is to clear your schedule. You have a couple of weeks, take advantage of them. Get the house, garage, cars, other projects done, out of the way, or at least find contingency. If you start in July, August and September are going to be rough. Rads start kicking in about week 2 and the effects are cumulative and it just gets worse every day until about 14 days after last treatment. It really does not get better then, it just stops getting worse. At that is a Huge thing mentally. Cisplatin can really through your body for a loop starting 12 hours after infusion and it may last 2-3 days. Everyone is different but nausea, vomiting, "chemo fog", loss of appetite, and constipation are real and make things uncomfortable. Form me, driving to the center was a "no go" Tues and Wed after Mon cisplatin. Just get through the next feeding, Feeding turn to days, which turn to weeks. Its a grind. The good news is that it does end and things do start improving. And for many people like myself the treatment is effective. As I said I am just under 5 years out and doing well. Posting also helps a lot of people "empty out" thoughts and feeling and generally provides comfort and reassurance. Good luck with treatment.
Hockey Dad 43, No smoke, Small BOT HPV+16 8/30/12 Biopsy found SCC in Lymph node (removed) 9/19 DX 4a T1N2aM0 10/1 TX 2x Cisplatin 35 IMRT 70 gry (Done 11/15) PEG tube in 11/7. Out 1/4, Back at work 2/4/13 PET 2/13 Clear, 10/16 all Scopes Clear, 4/14 Chest X-ray Clear, 5/14 Abdominal ultrasound Clear, 8 yrs clean!!!
| | | | Joined: Jun 2017 Posts: 14 Member | OP Member Joined: Jun 2017 Posts: 14 | Thanks for being upfront. Your experience is similar to what I've been told. The good news is that I'm in decent shape and I'm going to the gym and will work out as long as I can after treatment begins. Right now, I'm dealing with the mental aspects of this. Any advice would be appreciated. Posting helps. It is difficult to focus on the future, but that forces me to live in the present, which is something I've never been good at. I'm scheduled for seven weeks of radiation and three days of chemotherapy. Cisplatin. I'm a solo attorney. I'm fortunate that I'm putting my cases with a larger firm, so my clients will have experienced representation during my treatment. I will be with the larger firm when I get back as Of Counsel. I hope to start treatment by the end of this month or early July.
Philip
| | | | Joined: Dec 2016 Posts: 46 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Dec 2016 Posts: 46 | Hi Philip,
The time before treatment starts can be the most stressful. It's difficult waiting for things to start happening and your thoughts include the fears of cancer as well as those of the treatments. Everyone reacts differently to the treatments and some do much better than others. Personally, I handled the treatments fairly well by comparison to many. The fact that you are in good shape is a definite plus and you might try concentrating on getting yourself in better shape before you start. Whatever your routine is, kick it up a couple of notches. Then you are doing something "proactively " to help you through the treatments instead of just sitting around waiting for it to happen.
Finding a live support group prior to treatments can also be very helpful. Your hospital or cancer center should be able to point you in the right direction. They should also have social workers available as well as therapists and psychologists. All you have to do is ask. Most cancer centers take the emotional side of this disease as seriously as the physical part. Just let your doctor(s) know you are having problems. If you were preparing for a case you would utilize every expert witness you needed to win. Do the same thing for yourself.
I know you have heard it before but just keep a positive outlook. Positive thoughts lead to positive outcomes. The treatments are difficult but they are "doable." You have a lot of good things going for you and I know your going to be fine.
Ed ðŸ¤
Edward, 64 yrs 7/21/2016 Dx BOT stage 4 w additional tumors neck & left lymph node 8/15/2016 began Tmt EBT w Cesplatin 1x week for 8 wks. Feeding tube and port. 10/17/2016 finished treatment. CT still shows tissue. Dr. Says 60% chance it is scar tissue. 01/13/2016 PET Scan shows no sign of cancer.
| | | | Joined: Oct 2013 Posts: 69 Likes: 1 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Oct 2013 Posts: 69 Likes: 1 | I really did not care much for the Cisplatin. Not that anybody really does. On the good side it's definitely not habit forming.
I had three doses with concurrent rads as it sounds like you will. The first day of chemo I looked a little green, but didn't feel bad. It took me two or three days to feel bad from chemo. My MO emphasized the importance of fluids after chemo. Get the stuff in and get it out quickly with the fluids. I had fluids by IV for two days after infusion to help clear it out.
It always seemed surreal that the nurse would come out wearing a face shield,plastic apron and rubber gloves to protect themselves from the Cisplatin that they were injecting into my vein.
Treatment is tough, but you will get through it. Be aware that the toughest days are just after treatment ends. It takes a while for things to catch up with you.
I made a list of things I wanted to do post treatment. It gave me something else to think about. Light at the end of the tunnel kind of thing. I've done most everything on it now.
Enjoy your pie and get it ala mode. Everything's better with ice cream.
Oropharyngeal Cancer, SCC, HPV 16+, stage IV T1N2b age 45 Started in my tonsils and spread to my lymph nodes Cisplatin x3 with concurrent daily radiation treatments started 10/22/13 finished 12/6/2013
| | | | Joined: Apr 2017 Posts: 81 Likes: 2 Supporting Member (50+ posts) | Supporting Member (50+ posts) Joined: Apr 2017 Posts: 81 Likes: 2 | Gulfcoast Good to know you worked! I am hoping to stick to my routine as much as possible.
Philip, The ideal time frame, according to my radiation oncologist at Stanford, is treatment within 70 days of diagnosis. It's okay to take some time to choose the right protocols.
My timeline: Lymph node noticed 1/5; many tests all clear until "cyst" removal 3/6. Diagnosis of metastatic SCC to lymph node 3/7. Biopsies to find the primaries benign 3/13. Referred to Stanford 3/29. Trans oral robotic surgery to identify primary 5/9. 2mm primary found in vallecula 5/10. Rads started 6/13 for 30 sessions, 60 Gy.
Keep fighting friends!
Me -- currently 53 years old SCC diagnosed 3/7/2017 at age 48 Staging SCC HPV+ T0,N1 primary unknown PET 3/16, no activity, biopsies 3/23 benign TORS surgery identified 2mm tumor in BOT (vallecula) Cancer restaged T1, N2, M0 Begin 30 sessions of radiation (60 Gy) 6/13 Completed radiation 7/24/2017 1st MRI clear 10/23/2017!! 2nd MRI clear 10/17/2018! | | | | Joined: Jun 2017 Posts: 14 Member | OP Member Joined: Jun 2017 Posts: 14 | Any thoughts of combining immunotherapy with the chemotherapy and radiation treatments? Philip.
Philip
| | | | 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 | As far as I am aware, immunotherapy is a kind of chemo. That's how it was when I husband was in the trial.
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. | | |
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