Bad Day

everyones different and everyones treatments are the same but different ive found..it is very overwhleimg at first and i remember thinking how will we ever get thru all of this...but you do..one foot in front of the other and one step at a time..just keep reminding yourself..at least he is able to get treatment...it is very scarey and our favorite saying everyday is...well..we made it thru one more day...over one more hurdle..you can do this..stay strong..lifting you up in prayer...where are you getting treatment?

for treatment of this disease.  One step at a time, one foot in front of the other.......stay in this day, tomorrow will be here soon enough.  Trust in your Drs.  Get the chemo started where you are, but try and keep your plans with MDA......a few days isn't going to change much, and he'll be feeling better a couple of days after the chemo.

I'm sure he's feeling devasted and depressed after today, but that can pass.....staying positive fights cancer, I swear it must.....One big piece of advice I received when I first got here was to stay off the internet......I did, and I was a much happier (and more positive) person for following that tidbit.  What you're reading isn't necessarily correct or up to date.....

Sending POSITIVE thoughts to both of you, and prayers too  

p

lump, i'm saying prayers for both of you.

God bless you,

dj

About particulars of the treatment are best asked of the physician because, as you have said, we are all individuals and treatment plans are individualized in some respects.

Statistics are just that and it depends on your outlook (and on this ride, your outlook can be up and down like the proverbial roller coaster) so read them if you choose but do so knowing they are neither right nor wrong - they are just statistics and all factors are never accounted for even in the best of studies.

As Phrannie and others have said, it truly is a one day at a time journey.

You are both in my thoughts and prayers as you begin this journey.  As many others have stated, one day or even one moment at a time.  Stay strong.

LumpinmyThroat said:

Full Dx

Don,

All the oncologist said to us was stage 4 and he said the lung nodules were mets from the HNSCC. He said if the chemo didn't take them off, the surgeon would. This might be a dumb question...but why don't they do the fancy targeted radiation and aim it at the nodules while they're at it?  If it just hits a specific area, wouldn't that be an area to hit?

i was mistaken about one of the drugs. Taxotere, not Celuximab. He's 24 hours into the 5FU now and will be released tomorrow with the pack that will go 96 hours in total. He will be on a 21-28 day cycle for the next dose of the same drugs. The doctor said 4-6 rounds with a CT next month? He's very vague. Really looking forward to talking to someone else. Hope MDA can get us in this week.

The dr said the treatment goal is remission and then keeping this **** away forever with drug therapy... 

Another question about chemo that might not make sense: My mother had multiple myeloma and did chemo 1995-1996. She was NED at the time of her death from sepsis. Doesn't that mean that the chemo killed the cancer? 

 

 

OK. Induction TPF at 3 week intervals. Exactly as what I had. Of course, dosing is different for each of us as the blood work done before goes into the custom formula each time.

If the doctor states the lung nodules are cancer and mets and from the HNC SCC, then it would be graded as M1 according the NCI guidelines. The radiation treatmet  treats the HNC cancer is directed in the oral area. All mention of mapping and radiation therapy is always targeting this one area, never two at the same time.

Everything related to treatment for distant mets is a subject best conducted in detailed face-to-face consultations with your doctor(s). It would help brining along someone who can take notes and review the meeting with you afterwards. Also, you need to ask about tumor board or similar team oriented approach to overseeing your case.

Getting other doctors to review and have input and guide our treatment plan is really critical in more complicated cases. Ask, insist on your presence at tumor board meetings and do your best to understand their discussion. Most will go over your head but you will certainly be able to pick up on the dynamic and how together they are or how differing the opinions may be as well as the recommendation.

Work with your doctor who is presenting your case and ask all the questions you just posed here. Things like what and how are the met. tumors going to be treated? Are these curative therapies? Is the chemo given to control the disease or to kill it? Is the plan for long term drug therapy or just through the immediate treatment plan? If chemo is planned long term, ask again why.

As to the CT at some weeks out. They likely want to check the results of the treatment. In my case, there was an immediate visible improvement (shrinking) of the tumor after the first round. More reduction after the second. After the third round there was zero visible tumor. The CT confirmed that there was complete resolution of the tumor. The area was still radiated to kill the cancer. The chemo did its job to minimize it but chemo does not kill cancer. The much smaller size allows the radiation field to be smaller and then less chance of long term effects from damage done by the radiation.

Lastly, do not accept "vague". You deserve a complete picture of the situation you face. Speak up or have the person you bring along (maybe select one of your friends you tends to be a "take no guff" type) and ask and ask until you are fully satisfied and understanding. You can do this!

Good luck, Don

sending prayers your way.  I know it is tough and will be thinking of you.  Ann