Hello,

My dad was just recently dx with CUP and underwent his first chemo treatment today. Since his dx I've been scouring the internet looking for as much information as I can - but really need to talk to others who've experienced or know of others experiencing cancer.

A bit of background... My dad is 65 years old and relatively healthy. He found a lump under his arm that grew rapidly and about 4 weeks after finding it they removed it and said it was cancer - but not the primary. He's been through CT scans, full body PET scans and saw an ENT doctor but they still can't find the primary. He'll be going for another test this Friday around the stomach area. This really baffles me. I know there are cases out there, but it seems so strange that they can't find anything else. The tumor under his arm was his only tumor.

They're classifing it as squamous cell carcinoma. But I also think they said something about poorly differentiated. They're saying it definately isn't related to lymphnode. Is this good or bad?

The other thing I'm confused/worried about is, if they can't find anything now, how are they going to tell if the Chemo is working? I'm assuming it's if they don't find anything new later?

Thanks in advance for any insight.
Lynn

Lynn,
It's my understanding that poorly differentiated squamous cell carcinoma is one of the "best" types of CUP to have. Are they just doing chemo, or are they planning some radiation to the area as well?

Also, do you know what type of chemo they're using?

And, did they get all the cancer out through surgery? If not, they'll watch whatever's left to determine if the chemo is working (sometimes the cancer has adhered to arteries and/or veins, so they can't get every bit of it...frequently this works as a marker to determine response to chemo.)

Whether or not they got the entire tumor through surgery, your father will probably be followed with CT scans periodically...most likely every 2-3 months at first, then every 4 months, then twice a year, then once a year. Since his tumor was under the arm, they will probably do scans of the neck and chest area, as something under the arm would most likely have come from one of those two areas.

Just to give you some hope, I will be celebrating my 5th anniversary cancer-free this coming October. I had a tumor in my left groin area (referred to as "inguinal"). It was poorly differentiated, with similarities to squamous and small cell cancer. I was treated with taxol/carboplatin chemotherapy, and then with radiation to the area. God willing, your father will have as good a response as I did.

Ruth

Hi Ruth,

Thank you so much for your reply. As I was scanning the boards, I was able to read a bit on your history - you are an inspiration to all!

You asked some good questions - one's that I'm trying to get the answers to. My mom has been a bit overwhelmed and I don't know if she's understanding everything the doctors have been telling them.

As for right now, they're just doing Chemo every three weeks. Radiation was mentioned, but I think they're waiting to see how he responds to Chemo. Luckily he did very well on Wednesday and even came over on Thursday to help us with our sprinkler system. :-) I think that his response to the first round of Chemo has helped him feel a bit better mentally - I could tell he was extremely nervous, although he has a hard time letting others know that.

Once I have some more info, I'd like to share it with you and see what you think about it. I really appreciate your kindness and willingness to share with others.

Thank you,
Lynn

Hi again,

The three main drugs he's on are Carboplatin and Paclitaxel and Etoposide.

As far as my mom can remember, they removed all of the tumor under his arm.

Were they able to get all of yours?

Thanks,
Lynn

Hi Lynn,
Good chemo regimen for squamous cell. He may get some neuropathy from the paclitaxel, but if he does, it might also go away after a while.

My cancer had already spread beyond the lymph node and was adhering to some arteries and veins leading to my right leg, so they were not able to remove it all surgically without destroying the use of my leg. That may be why they did radiation to the area in addition to the chemo. But it isn't unusual for them to do both...the theory being it's far better to knock everything out the first time than take a chance that a few cells will survive to proliferate again at a later date.

As for being an inspiration...if it helps someone else, then I'm gratified and humbled to be an inspiration. For the most part, I just keep trying to put one foot in front of the other and keep on going!

Ruth

I too have cup a brain tumor removed last of feb had 20 radation treatments whole brain will do last chemo in 2 weeks my drs said they check chemo working by the tumor markers which are the bmp test cea test my test have been great do have some very hot feet am taging b6 and L-glutamine hope this helps

Hi Grace,
What type of chemo did they give you? If it was taxol, taxotere, or paclitaxel, that could have affected the nerves in your feet, which may be why you have that sensation of heat. I've heard that alpha lipoic acid is good for reversing nerve damage from diabetes, and it might help in your case as well. If you go to the diabetes board and do a search for either "neuropathy" or "alpha lipoic acid", you should find a thread where I posted info given to me from some diabetic friends re ALA and the dosages.

Are they going to do follow-ups other than the cancer markers for you? Like CT scans of the brain? Usually they follow up about every 2-3 months at first, then as time goes by and you (hopefully!!!) don't have a recurrence, they'll space them out further. But they shouldn't be relying strictly on tumor markers, as sometimes those don't get elevated even when cancer is present. My mother was a perfect example...even with 3rd stage breast cancer, her markers were normal! Weird, I know, but there it is...no one test is perfectly accurate.

I'll bet you are soooo looking forward to the end of treatment! Do something nice for yourself to celebrate...and keep us posted on how you're doing.

Ruth

Hi all,

Interesting note about the neuropathy - I'll definately have to look into that.

So far, so good. He felt tired and achey the 3rd & 4th day after Chemo but seemed in good spirits when we visited him on Sunday. They put the port in for the Chemo yesterday and all went smooth. Has anyone else used a port for the Chemo?

Lynn

Yes, Lynn, I had a port installed for chemo. It's a lot easier...the main subclavean is much larger than the veins in your arms, so it doesn't get burned out by the chemo.

As for tired and achy...whoa...tell me about it! It's a good thing they only give the chemo once every three weeks, because it takes at least a week to recuperate. Usually by day 5 or 6 you're starting to feel more normal. And some of the effects, such as nerve damage, are cumulative, so you feel them more with each treatment. By the end of 4 treatments, I could barely walk on my left foot, as it felt like I had a huge rock in my heel. The good news is that a lot of it goes away when you finish treatment, so tell your Dad not to get discouraged.

I kept the port in for about 18 months after I finished chemo...had to go have it flushed every 5-6 weeks, which was a pain in the neck, but I didn't want to take it out if I was going to need it again. Finally I said "what the heck...no recurrance so far" and had it taken out. God willing, I will never need it again!

Ruth