New here, help please? Recurrence of SCC, tongue, T4

StillHereX3

Hi.....

I have read several of your posts, I truly appreciate the kindness and camraderie that all of you possess.

This is my third time with cancer, two different types. 1991 - Lymphoma-Hodgkin's, 2015 - SCC of the tongue, 2017 recurrence of SCC of the tongue.

It's been determined that the 80 radiation treatments, I received in 1992, caused this SCC.

I am scheduled to start a 7 week course of radiation and chemo (Cisplatin) next week. Surgery is out of the question. My tongue, base of tongue and layrnx would have to be removed. I'd never be able to speak or swallow, ever again.

I apologize if I'm not using correct terminology, I am not familiar with all of the acronyms I see, being used.

In terms of radtion, I more or less know what to expect. My biggest concern, right now, is the Cisplatin. I have read a variety of articles about this drug, some explanations favorable, some hiddeous. I am trying to decide if I should skip the Cisplatin and try the radation, by itself. I realize that none of you are Drs or can giver certifiable medical information. What I am looking for is opinions, experiences. To be honest, chemo scares the crap out of me. I live alone, in a rural town in the mountains in VA. My treatment facility is an hour away. I plan on driving myself. If you don't mind, please read my About Me section, to see what I have endured.

I know this is my decision to make. Can anyone here please share their experiences of having radiation and chemo, together? This Cisplatin, when you read about the drug - if it touches your (outside) skin, it will cause burning. This is something they want to put directly into my veins???

Thank-you, in advance, for any help provided.

Melissa.

 

 

 

 

corleone

Personal experience with Cisplatin

I had a different type of Head and Neck Cancer, called Nasopharyngeal Carcinoma. However, the treatment is very similar with the SCC of the tongue, and I received concurrent chemo (Cisplatin) and radiation 70 Gys (pretty much the max dose of radiation that one can receive, without leaving this world).

In my experience, the side effects of the radiation are much worse, and longer lasting. Generally, there are 2 different Cisplatin regimens, one - lower dose administered weekly (better tolerated), and the second (that I received), larger dose every 3 weeks, 3 cycles.  In terms of efficacy, I am not sure which one is better. In my case it was very effective, it started “melting” the large (4.5 cm) nodes from my neck almost immediately (volume decreased by half after each cycle). To the side effects. The worst is – highly emetogenic (induces vomiting) for 2-3 days after dosing. This can be contained - there are powerful meds for that. It’s nephrotoxic (kidney toxic) – this can be avoided too, with proper care (basically hydration). Ototoxicity is another one – causes hearing loss. For this one there is no known prophylactic treatment  - I didn’t have the 3^rd round because of this (I lost a great deal of my hearing). There are others as well (decreased blood counts) but not very significant. If cisplatin escapes from the vein it can cause tissue damage. The nurse or doctor who gives cisplatin must be carefully trained. I used a midline catheter (peripherally inserted catheter that can remain in place for up to a month) – that helped with that.

 

The 2 treatments (Cisplatin and radiation) together act synergistically, meaning the effect is better than simple addition of individual effects. 

phrannie51

So many of us had Cisplatin...

...and you'll probably hear the gamut from little reaction to people who's bodies could hardly take it.  I had the 3 large dose infusions, every 3 weeks....I can say I had days, here and there where I felt nauseated, and didn't want anything to eat or drink....but generally speaking, I tolerated it well.  I got pretty wimpy for 3 days after a treatment, but stayed glued to the anti-nausea regime set up by my Onc.  This included 3 days of Emend, which for me was all it took to feel better.  By the middle of week two, I was fine....with 10 days to go before I had to start they cycle again.  Like Corleone above...I had NPC, so I actually had the 3 Cisplatins during radiation.....then after rads were over I had another 3 Cisplatin with a 4 day fanny pack of 5FU.....I had no hearing loss, but did end up with a light case of neuropathy in my fingers and toes (which could have been from the 5FU).

Here's the deal....if someone cannot tolerate Cisplatin, there are other choices....Carboplatin, or even Erbitux...I would talk this over with my Oncologist...ask if "I can't tolerate Cisplatin, what options do I have?" 

I didn't know Cisplatin would damage the skin....but chemo nurses are highly trained, and I've never heard of anyone getting it on their skin....my veins made it through 6 treatments just fine.

p 

PS....I read your story, and you've been through a lot....you'll get through this, since you're a fighter and you don't dwell in the problem, but go after the solutions...GOOD FOR YOU!!!

 

CivilMatt

welcome

Hi Melissa,

Welcome to the H&N forumX3.

Most any chemo with rads work together to kill (or setup) to kill the cancer.  In your case you probably wonder about that.

I hope you trust your team and will follow the recommendations provided by them.  Side effects can be rough, but you know that and in some ways maybe your experience will aid you.

There is no doubt that less of any of the treatments will make your journey easier in the short run, but we are looking for your future.

Take care,

Matt

swopoe

My husband had SCC of the

My husband had SCC of the tongue in 2015. He had cisplatin with rads. One dose of cisplatin each week for 5 weeks. He was lucky and had minimal side effects from chemo. The chemo was what scared us the most too, but the rads were the worst part. The chemo was just time consuming. His side effects from chemo were mild ringing in the ears (which went away) and some mild nausea and heartburn. But the point is that it all worked. And we did whatever it took. Best of luck and prayers.

Sprint Car Dude

Cisplastin

I had the 7 weeks of Cisplastin and 37 Rads. I found the Chemo caused some nausea, a lot of constipation and some lingering side effects like the ear ringing and cold toes.. Ya, whats up with that. LOL. Hey you have been down this path before and I chose to get the most effective treatment plan my team could provide. 80% of my issues where radiation related. Hey go for it. YOLO.. Good Luck and Fight The Fight.

soonermom

Cisplatin

My husband just had the 3X Cisplatin regimen.  He ended up only being able to have a half dose for the final dose because of side effects.  Many patients do not have all of the planned Cisplatin treatments.  My husband started out driving to and from treatments.  To be honest by the end, that was totally impossible.  Also, we totally understimated the difficulty of the two weeks following the end of treatment.  That is when he ended up in the ER.  It is critical with Cisplatin to maintain hydration.  Critical and can become difficult.  Everyone has their own feeling about PEG tubes.  I cannot fathom how my huband would have made it through without one or had any chance of maintaining the hydration recommended when you are on Cisplatin.  The people in treatment on the weekly regimen seemed to experience fewer side effects but that's not scientific, just from our sharing at the center.  For us we found the last two Cisplatin treatments the most difficult.  Management of constipation was a constant thing as well.  It is a hard road but you can make it through if you have a support system.  In our situation we were highly discouraged by the medical team from opting out of chemo but every paitent is different.  We lived over 2 hours from the center.  Keep us posted.  I am sorry you are on this path but you can do it.  

soonermom

Rides to treatment

The American Cancer Society offers rides to and from treatment in our area if you find you need it.  My husband was not able to drive at the end due to a combinaiton of side effects from the treatments and the pain meds required to manage those.  You may have an easier time.  I was able to drive him each time but I know there were people at the center who utiized the ACS drivers.  

SASH

Chemo and Rads

I did the combo of Chemo and Rads for Stage IV tongue cancer.  My cocktail of doctors choice was Carboplatin and Paclitaxel for 12 weekly sessions with 10 weeks, 46 sessions of radiation.  Instead of doing a full dose of chemo every three weeks, they were doing 1/3 dose every week.  So for my last chemo #10, they went to the full dosage so that was 10, 11 and 12 all in one.  

I did ask my Rad Onc what the odds were if I skipped doing chemo and just did rads and the odds, for me, went from 75% to 45% of beating it.  Based on the numbers given, I fought with everything possible and have been cancer free for over 17 years.

 

StillHereX3

corleone said:

Personal experience with Cisplatin

I had a different type of Head and Neck Cancer, called Nasopharyngeal Carcinoma. However, the treatment is very similar with the SCC of the tongue, and I received concurrent chemo (Cisplatin) and radiation 70 Gys (pretty much the max dose of radiation that one can receive, without leaving this world).

In my experience, the side effects of the radiation are much worse, and longer lasting. Generally, there are 2 different Cisplatin regimens, one - lower dose administered weekly (better tolerated), and the second (that I received), larger dose every 3 weeks, 3 cycles.  In terms of efficacy, I am not sure which one is better. In my case it was very effective, it started “melting” the large (4.5 cm) nodes from my neck almost immediately (volume decreased by half after each cycle). To the side effects. The worst is – highly emetogenic (induces vomiting) for 2-3 days after dosing. This can be contained - there are powerful meds for that. It’s nephrotoxic (kidney toxic) – this can be avoided too, with proper care (basically hydration). Ototoxicity is another one – causes hearing loss. For this one there is no known prophylactic treatment  - I didn’t have the 3^rd round because of this (I lost a great deal of my hearing). There are others as well (decreased blood counts) but not very significant. If cisplatin escapes from the vein it can cause tissue damage. The nurse or doctor who gives cisplatin must be carefully trained. I used a midline catheter (peripherally inserted catheter that can remain in place for up to a month) – that helped with that.

 

The 2 treatments (Cisplatin and radiation) together act synergistically, meaning the effect is better than simple addition of individual effects. 

Hi Corleone

Thanks so much for your response, I appreciate you sharing and your support.

I've decided to go with both the chemo and the radiation. In regards to radiation, I am unfamiliar with Gys. Back in ancient times, when I had my 80 treatments, it was called Rads. Technology has changed so much. Back then, they told me I had received the maximim allowable dosage. I believe some days I glow in the dark lol  I realize cancer is NOT funny but it's how I cope. 

I had not even healed from major surgery when I had to start radiation. So, I was not 'good' to begin with. The radiation started hitting me around week 3-4. Towards the end, I was so exhausted, I could barely walk up the stairs. I'm really hoping that 7 weeks will be easier on me than the four months I had. Of course with the added chemo, I have my reservations. I'm hard headed and stubborn. A Dr could tell me I'll puke for 12 hours afterwards and I probably won't believe him until it happens. Each person is different and I am of the ilk that I have to find out for myself. But, I very much so appreciate your sharing with me. 

I start radiation tomorrow (Tuesday) and chemo on Wed. Both my radiation and chemo Dr feel my chances are much greater, doing both at the same time. So, I will follow their advice and hope for the best. I am receiving the Cisplatin once a week and radiation every day. I felt like today was my last day of freedom and tomorrow, I begin serving my prison sentence. They did tell me I would be receiving (3) different anti-nausea meds, along with other 'additives.' I think one is a mild sedative, at the beginning of each infusion. I may end-up differently but I am going without the port, or the PEG. I asked them to please give me the opportunity to try this on my own.

Thank-you very much for sharing your information and story. I'll keep y'all updated 

corleone

StillHereX3 said:

Hi Corleone

Thanks so much for your response, I appreciate you sharing and your support.

I've decided to go with both the chemo and the radiation. In regards to radiation, I am unfamiliar with Gys. Back in ancient times, when I had my 80 treatments, it was called Rads. Technology has changed so much. Back then, they told me I had received the maximim allowable dosage. I believe some days I glow in the dark lol  I realize cancer is NOT funny but it's how I cope. 

I had not even healed from major surgery when I had to start radiation. So, I was not 'good' to begin with. The radiation started hitting me around week 3-4. Towards the end, I was so exhausted, I could barely walk up the stairs. I'm really hoping that 7 weeks will be easier on me than the four months I had. Of course with the added chemo, I have my reservations. I'm hard headed and stubborn. A Dr could tell me I'll puke for 12 hours afterwards and I probably won't believe him until it happens. Each person is different and I am of the ilk that I have to find out for myself. But, I very much so appreciate your sharing with me. 

I start radiation tomorrow (Tuesday) and chemo on Wed. Both my radiation and chemo Dr feel my chances are much greater, doing both at the same time. So, I will follow their advice and hope for the best. I am receiving the Cisplatin once a week and radiation every day. I felt like today was my last day of freedom and tomorrow, I begin serving my prison sentence. They did tell me I would be receiving (3) different anti-nausea meds, along with other 'additives.' I think one is a mild sedative, at the beginning of each infusion. I may end-up differently but I am going without the port, or the PEG. I asked them to please give me the opportunity to try this on my own.

Thank-you very much for sharing your information and story. I'll keep y'all updated 

Gys = Gray(s). The conversion

Gys = Gray(s). The conversion to Rad(s) is: 1Gy = 100 rd (rads)

I felt the same when I started the radiation. When asked by the technician how I felt, I told her, better than any days moving forward. This was true for the treatment and couple of weeks after, but otherwise I was wrong, as this slowly changed to normal (well, sort of, more like a new (ab)normal).

The side effects of radiation might be a bit worse the second time, but hopefully not by much. When the radiation team does the radiation plan, they take into consideration the area that was irradiated before, and they are able to create a sort of 3D field for irradiation, protecting the vulnerable regions and attacking (higher dose) the tumor itself. This is the benefit of using the IMRT (which I suppose will be the case).

 You see I don’t mention the chemo, as the side effect will not be major, if all the precautions will be taken, as I mentioned before. The only thing I would add, you can ask the team to have a hearing test done prior the first chemo session, used for baseline, so that they can see if there will be any drop in hearing .