We fired our provider today and feel real good about our new doctor. He ordered a HPV test for us. He thought they should have done it already. We will continue treatment without the F5U. This was a hard lesson learned. I usually don't put up with slack doctors. Now we need to move forward.

Vanessa

Vanessa,

T had almost the same treatment, same diagnosis, mets to neck were more severe since he waited sooo long to get it taken care of. 5FU (I liked your nickname) caused the mouth sores, general feeling like crap, burning when swallowing and these huge brown spots on his legs, which went away weeks after the third round. He had to get the Neulasta shots due to low counts, which made him feel so much better. You are right...this treatment is horrible, but the aggressive approach is the way to go if you want to see him many, many years in the future. Best of luck to both of you!

DONNA,

Yes, the aggressive approach is the way to go. THe doctor we have now is involved in a lot of research, he says that the 5FU added to the mix is not showing any added benefit compared to just the cisplatin/docetaxil. This apparently is the latest. Jeff's mouth sores are so severe he still can't swallow or take any solids- 3 weeks now. We are going to continue treatment without the 5fu and then have the surgery to remove the nodes ( even though they are almost gone). We feel okay with this decision and have done our own research on the most effective drugs. His reaction apparently was over the top and at this point they feel the F5u would cause more problems than benefit.This is the team of doctors decision not ours. We said we would do whatever it takes.

The doctor we fired had the same thoughts about treatment but he was disorganized and not attentive in getting back to us and somewhat dismissive; hence the reason we went to another provider more together.

I sense peoples concerns that we are eliminating the 5FU and of course it makes me nervous. I had to ask a hundred times if they are sure about the latest research, checked it out myself and then asked again if they are sure he should discontinue the F5U. They felt very confident in their decision. So....we start next Thurs without the 5FU. Meanwhile Jeff is on the PEG and still on high doses of morphine for his mouth.

Just a thought.. I wonder if they has given him the 5FU before radiation as an induction it might have been easier on him? Your husband had it before?

Vanessa

Either way it is scary not to do every drug just in case but I have to trust that this treatment will be the best for Jeff considering his reaction.

Vanessa,

I would continue to still question the node removal without some evidence that they were cancerous. There are always pros and cons to surgery and if there are no pros (no to gain by doing it) then there are only cons left.

David,

Good point. Our ENT hasn't completely decided, although she is more towards taking them out. The oncologist wants them out. This whole thing makes me nervous... I have no idea how people do this who are not resourceful. I guess they just do what they are told...I'm having my first very anxious day today. Maybe I'll ride my bike and be like you...( oh yeah I don't have a bike, I gave it to my son, maybe a workout at the gym)

Pet scan is Oct 28th.

Vanessa

Vanessa - I do not know about the pros & cons of 5FU after rad. My husband received it in an induction dose with Cisplatin & Taxotere, followed by 2 concurrent doses of Cisplatin during rad therapy. The induction chemo causes horrible side effects and therefore delays recovery. His tumor was borderline for recommending induction (low mass primary but with one large cervical node), according to consult at Dana Faber & local MO. He decided to do most aggressive tx.

I am writing to say that those side effects did eventually resolve but it took much longer than many on this forum report. Actually Sophie H. wrote to me one year ago, when I was fearful that things would never improve, reminding me that with induction you can't compare the rate of recovery to other patients. She was a life saver because at the time I was so anxious that I forgot to take that into consideration. I couldn't understand how others were improving and my strong husband was stalled in his recovery.

My other point is that you never know when you might be sending someone a life line on this forum. Thank you all. I hope this gives you some encouragment.
One year post- tx with two clear PET scans!

Vanessa,

One of the posts I hate the most is a newbie to come here and almost proudly say that they had a ND and 20 something nodes were removed an ALL WERE CLEAR!!

Vanessa

Like David, I wince when I see those posts about neck dissection and lymph nodes removed that turned out to be perfectly healthy.
With all that he is suffering through right now, you may wish to ask your new improved doctor about "watchful waiting" on taking out lymph nodes. I refused a neck dissection after my first TX and never regretted it. When the cancer did come back, it had nothing to do with leaving in the lymph nodes, and I was so scared that I caved in and agreed to a neck dissection since I was having such extensive surgery. Of course, there was zero cancer in the nodes removed but now I have constant neck pain and major scar tissue limiting my neck movement despite therapy and exercise. My rambling point is that I waited one year and six months to finally have the neck dissection with zero adverse consequences due to the wait and watch. I wish I had remained steadfast but the shock of recurrence and a misplaced desire to "do everything and anything" clouded my better judgement. FU5 may turn out like neck dissections: better in concept than execution and results.
Hang in there
Charm

Sound advice. Well taken...

Vanessa