Hi everyone,
I just needed to vent because I'm sitting at home with my husband upstairs. His last chemo ( this is the round after 33 radiations and 3 chemos concurrent) which was three different drugs, 5fu/docetaxil and cisplatin all together didn't go well at all. He came out of radiation with good results. Not too bad mouth sores and was able to gain 10 lbs the month after treatment and eat some foods and then they decided to do 3 more rounds. He has every side effect possible from the 5fu and can't swallow a pill or water. He has red spots covering his body and basically other side effects. He is now 2 weeks post chem TREATMENT and he isn't getting better. He does have the PEG, thank god!Even though he lost 4 lbs in two days. I'm just having a hard time watching him go down hill when we got through the radiation and chemo. Of course they won't be giving him the 5fu ( the culprit) and we have asked for a second opinion re further treatment. His PET scan is Oct 28th. to see if the scan is clear. He still has small nodes so he might also get surgery. I'm just having a hard time dealing with the round the clock care and the morphine and the drips and trying to get him bathed.I kept it together the first round but I feel so bad for him.His mouth sores are not healing at all. We have to decide whether to continue chem treatments( I would feel awful if the cancer reoccurs and we didn't do everything) How much suffering is he suppose to go through? We don't know yet if the pet scan is clear. I see a lot of people on the forum who didn't get these extra rounds of chemo ( mind you, the research says that these three drugs are the most effective together in treating this cancer mostly as induction chemo.) Any body out there have a bad experience with 5FU?
Vanessa
Where is he being Tx'ed?
Was he tested for HPV?
Was he a tobacco user?
David,
Not a smoker and no he hasn't been tested for HPV. I think I get where you are going with these questions. They won't test him for HPV b/c they say it is irrelevant to the treatment, however I will address it again during the consultation with the new doctor this week. I realize if it is HPV then reoccurance of the cancer is less seen? We would have to probably pay out of pocket b/c Kaiser won't pay for the test. I hadn't thought of getting him tested until you brought this up just now. That might help us decide whether or not to continue more treatment. He is really suffering and not improving at all from that last chemo....
Vanessa
Vanessa,
I can understand how difficult this is as my husband had the same three drugs (similar diagnosis)as an induction treatment (to shrink tumor and minimize likelihood of distant metastisis) before he started chemo/radiation. We called the 5fu our own name- 5 f@#$ you as it seemed to cause most of the side effects. But you're correct- they're usually done as induction chemo. I can see how demoralizing it would be to get through the chemo and radiation so well and then to get so sick. My husband found the first round of the 3 drugs to be more difficult than the second. The meds to manage mouth sores and nausea helped. On the other hand, he had a more difficult time than many when he got near the end of the regular chemo/radiation which I believe is because of the induction chemo. He was really sick at a couple of points in his treatment and had pretty extreme side effects. We have wondered if his treatment would be different in the future because he is HPV+. BUT- he is cancer-free nearly two years following treatment and doing really well.
It sounds as if they have some reason to believe that these 3 drugs will help your husband's prognosis. Maybe I missed the reason for them in your emails. As difficult as it is to go through this, we have never regretted the aggressive approach because reasons for given to us for why the team chose that approach - and, we don't know if he'd be doing as well if he hadn't had it. But it was so difficult to see him sometimes and I had to remind myself that we could get through this and that is was just a matter of days or weeks in what we hoped would be a long lifetime.
My thoughts are with you and your husband- Sophie
Sophie,
Thank you for your response. It has helped a lot to give us strength to move ahead. I think our main complaint is our doctor hadn't prepared us. We are willing to put up with most anything to be cancer free,but to be mentally prepared would help. I can't go into detail here but simply we have had to ask for meds, blood tests, etc... when I would hope the doctor would do some possible preparation or thinking ahead. We are seeing another doctor tomorrow which we are very happy about. Right now, Jeff's blood count is really low. He just received a shot to help boost it and so I hope to see some improvement in the next couple of weeks. This was the first time I have seen him cry. It has been very hard..but thank you for reminding us why we are doing this.
Vanessa
Well I disagree in some respect that an HPV positive test wouldn't perhaps alter a treatment plan especially if they had already removed his tonsils and put him through concurrent radiation and chemo. Hell Moffitt told me 3 years ago that had they known I was HPV+ (they didn't test me until post TX) that they may have altered my Tx and they never discussed post rad/chemo chemo. It only stands to reason that if at least 2 studies have concluded that HPV+ responds better to (existing) Tx which is usually NEVER more than surgery and concurrent chemo/rad then it may be proven later that less Tx is all that's needed to treat HPV+ SCC and certainly not MORE Tx.
If it was me I would want to be tested for HPV and another opinion from a CCC before I was subjected to PERHAPS unnecessary torture.
David,
Thankfully we are seeing the head of oncology in another facility for a 2nd opinion. We are also going to request to be tested for HPV and hopefully they will pay for it. We are not moving forward until we can get the 2nd opinion and maybe a third. ( I LOVE THESE LITTLE FACE ICONS)
VANESSA
Hi Vanessa,
My husband Dan had 5-fu administered 2 weeks ago. He is on his second course of treatment and both times the 5-fu caused significant mouth sores followed by thrush in the week following treatment. He began taking a anti-fungal med last Mon. and slowly but surely it is healing. He was scheduled for 3 more weekly cisplatin treatments but this was put on hold until the thrush is cleared up. Side effects have a way of creeping up on you and I think all you can do is react as quickly as possible. It's a helpless feeling and both of you really need to have a cancer care team/provider that responds quickly and answers your questions and concerns.
Thanks for the feedback regarding your husband. We had Jeff on anti-fugal meds as well as using the magic mouth wash. It ends up his white blood count was extremely low. We asked to have his blood drawn and tested. The doctor was really slow getting back to us. He had the results Friday eve and got back this morning.
He was given a shot in the stomach to help with his blood count and given antibiotics. I think we will now start seeing an improvement. Your right, we need a care provider to think ahead and act quickly.We have A consultation tomorrow with another provider.
Our thoughts are with Dan.
Vanessa
Vanessa,
IMO Jeff is in good hands (yours that is).
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