Not4me

Not4me said:

Started Today

My first radiation treatment.....done

My first chemo....done

I know it will get worse but I have to say....the mask worn during radiation is HORRIBLE.  I sure don't like being fastened down. Seems like forever. They say I will get accustom to it....I guess we'll see  

My doctor did introduce me to a 75 year old man who completed his treatments for the exact same type of cancer as mine and he is doing very well. He gave me some pointers and what to expect. It is easy for me to say that I am ready but I am READY.

I have found that the power of prayer is miraculous and it is preparing me for the rough times ahead. 

and you are ready to fight. My husband starts his chemo and rads next week for oral tongue cancer. So we will be just behind you. Sending you prayers and good thoughts.

Not4me said:

Week 1

Cisplatin on 12/2 and I have felt horrible ever since. I was more worried about the radiation, which is cumulative, but CHEMMO is no joke.  I feel like the flu times 10 has parked in my garage.  On the bright side i can still eat and my throat is not hurting...YET.

Good luck and Glod Bless to everyone fighting. 

I am sorry you feel so bad! My husband's oncologist said that the side effects from cisplatin shouldn't be bad. She said on a 1-10 chemo scale that cisplatin was a 1 or a 2. Now I am worried. Flu times 10?  You are in my thoughts and prayers!

Kent Cass said:

1 or a 2?

If your Oncologist told you that, I would hold your Oncologist suspect on his/her knowledge. Really. As has been noted many times, H&N is regarded as the 2nd harshest C tx, and one of the reasons Erbitux came into the picture because it's regarded as more patient-friendly than Cisplatin. The up-side is that H&N is just about the best C one can get and expect to survive.

Flu x 10 is kinda vague. With flu one vomits and has a fever, etc. Maybe what you're eating is part of the problem. One has to make adjustments to see what works best. I only had the vomits twice, really, and both times were when I first woke-up in bed after sleeping too long, and the toxic saliva had gotten into my stomach. Solution was to set my alarm for 3-1/2 hours after I went to bed, then get up and finish my sleep/rest downstairs in my recliner so that my upper body was elevated. And feeling feverish is common. I was told so, and that the only concern was if my temp ran 101* or higher for an extended period of time- the 101 is the marker that tells the Drs that the body is not able to deal with what it's been dealt with tx. That did happen to me in weeks 5-6, and I spent 4 nights in the hospital getting antibiotic drips, along with my diet of Jevity, ice and Morphine. So, flu x 10= welcome to H&N tx. I would never have described it as such, especially here; but, yeah, it's a rough road to travel for a couple months. Just deal with it one day at a time, and think of it as an experience you're gonna survive, and never doubt that you will survive it.

Believe

kcass 

 

Thanks, Kent. This is an MD Anderson oncologist who specializes in head and neck cancer though. But I think we will be having a talk with her this week for sure. I know no one can say for sure what each individual patient can expect, but I want to be somewhat prepared for what we are going to go through in terms of the chemo. I think we have gotten lots of info about the rads already, but now I am feeling woefully unprepared for the chemo. My poor husband. I hate to think of all this happening to him. It is breaking my heart every single day.

HawkATP said:

Are you taking all of your

Are you taking all of your nausea meds?  I was given 3, and told nausea is worse the younger you are.

My husband had horrible nausea, despite taking nausea meds and he was an athletic 55 year old who played tennis, baseball, basketball and golf. It took a while to find the right combo of antinausea meds and even then he was still very sick.

Then you would see these cigarette smoking, alcohol swilling patients managing chemo with little to no side effects. I had a theory that if you have taken fairly good care of your body and hadn't contaminated it with cigs and alcohol, it actually had a harder time with the chemo because all that poison was such a shock to the system. Of course that's all speculation on my part - and everyone is different.

You look pretty young and in shape from your selfie - so buckle up for the ride and you'll get through it! Feel free to visit the board often - you'll get lots of good info here from people who have been down the road and back. And as an added bonus you'll get plenty of thoughts and prayers too.

Best of luck to you,

Barbara

Raddude said:

I am new here as well

 

I have just been diagnosed with stage IV Supragalottic. I will not begin my treatments until the first week of January because I won’t have any insurance until then. The doctors aren’t thrilled, but it’s what I have to do. They have told me I should have either erbitrux or cisplatin chemo in conjunction. However I am opting for radiation only. I just don’t understand how destroying your immune system to kill cancer is an effective way. I realize many on here will not agree, but after much research and prayer I believe this is the right path for me.

 

I have found some videos of a man named Peter and his caregiver Wieteke Koolhof and how he got through radiation using natural remedies and suffered very few side effects. Just thought I would pass these along. If they work for you, great! If you choose not to try, that’s ok too. Everyone is different. Good luck and I pray your healing and recovery are quick and painless as possible.

 

Healthy Nutrition and Keeping up your immune system during radiation

 

www.youtube.com/watch?v=I05vEd-MrOo

 

Skin Care Tips during Radiation

 

https://www.youtube.com/watch?v=wuHx34zwL0A

 

Natural Mouth Care during and after radiation

 

https://www.youtube.com/watch?v=OGieHbK8kdk

 

Welcome to the head and neck board - I am sorry that you have need of us, but glad that you found us. Best of luck as you start on your treatment journey. I'm sure mentally it must be difficult to have to wait until January to start. In the meantime - thoughts and prayers that your condition remains static or even improves with some of your alternative therapies while you are waiting to begin treatment.

Barbara

side effects from Cisplatine. My boyfriend was sent to ER after his 4th session. The doc switched to Carboplaine during the 5th sessetion and he felt it's alot more tolerable.

Not4me said:

Still going....strong

2nd chemo session today. 6 radiation treatments completed. I have, in the first week, lost 8 pounds. The radiation side effects are not bad, yet BUT the nausea from the chemo is beyond anything I could have imagined. Doc told me to start using the PEG and get nutrition. I told him that I would eat a horse if I could keep it down. He is working on his end and I will work on mine.  Other than the EXTREME nausea from the Cisplatin not much to report.   

How many chemo tx will you have? My husband had 2 concurrent with radiation and 1 after. They were all horrible. Others I know have more frequent chemo at a lower dose.  The thing that helped the most for his nausea was decadron. It took a while to find the right combo of antinausea meds to help. And the mucositis was so bad he ended up retching and vomiting from that as much as he did the chemo. IT DOES GET BETTER. It's hard to picture that now but truly, it does!

Do use the PEG for nutrition and go in for hydration if you need to. Watch out for neutropenic fever and be sure to call your doc if you develop a temperature right away. 

Two silver linings to think about...

1. HPV+ responds better to tx 

2. Think that if the chemo is making you that sick, it must be annihilating those cancer cells!

prayers for you,

barbara

corleone said:

Hi Raddude

At stage IV I think taking only radiation would be the suboptimal. Many clinical studies show that concurrent radiation and chemo has better survival rate. For sure, the side effects are much serious having to endure both, and the immune system will be affected as well during the chemo treatment. However, these 2 have synergic effect. Also, remember that the intended mechanism of action for both radiation and chemo is to induce DNA damage, so that the cancer cell (which already have damaged DNA repair mechanisms) can go in apoptosis (this is a kind of programmed cell death). I mention that, because if you take any alternative treatments during the radiation and/or chemo, while you might feel better, the intended effect will be lost (some of herbal treatment is very effective because it helps with DNA repair, and eliminates the oxidants that damage the DNA). So I would advise against taking that during treatment, but would be very helpful after the treatment ends.

one reason it is given concurrently with radiation is because it boosts the effectiveness of the radiation.

Not4me said:

almost 2 weeks

i believe we may have the nausea under control. It has been MUCH MUCH better. Almost non existent after the 2nd chemo treatment. Tired and sore I can handle but not combined with nausea 24/7. So doing better....but now everything I eat has no taste or bad taste. I knew it was coming but that still does not make it any easie. 

At this point I will take anything positive and milk it fir all it's worth. My faith remains STRONG and I am ready  

Good luck and God Bless everyone who is fighting. 

and there was one called Eating Well Through Cancer that had suggestions on what to eat at different stages such as the day of chemo, when you're neutropenic, when things taste bad. Not everything applied due to sore mouth, swallowing etc. but there were many good suggestions in it.

Barbara