Hi All,

I've been reading the boards for about a week now. My mom was diagnosed with Stage IV SCC on BOT October 08. She had partial glossectomy and a neck disection on the right side to remove some of the lymph nodes.

Around March 09 the cancer had returned aggressively in her lymph nodes in the same side she had the ND before (I believe it was Stage IV again but not positive). She had another ND and 33 radiation treatments with 3 chemo treatments (beginning/middle/end)over 7 weeks.

She's now about 10 weeks out and she was diagnosed with Stage IV SCC again(has a few visible bumps on her face). We just found out for sure today. Her surgeon mentioned treating it only with Chemotherapy (no surgery), but to talk to her chemo and radiation doctors to see how they would like to proceed.

Her surgeon is at a loss for words, says he has never seen anything like this before (surgeon is from Memorial Sloan Kettering).

Has anyone out there fought an aggressive recurrence with Chemo alone with any success?

We are now considering contacting the Cancer Institute of Philadelphia to see if they have any alternative treatments available in addition to the Chemo. Any advice at all would be greatly appreciated, my mom is way too good of a person to deserve all this.

Josh

JAL:

Are you saying that your Mom was stage IV and she received only surgery..no chemo or radiation until her recurrence 5 months later and her original diagnosis and surgery was done at Sloan Kettering??

Deb

Josh
Welcome to OCF. I am so sorry to hear about your mother's 2nd recurrance. This type of cancer can be very sneak and come back when you least expect it. My first recurrance was 10 months post radiation and after a clear PET scan. Please let your mom know she is not alone, many people here have been thru a recurrance. Im on my 2nd one right now too.

Im not sure of your location but when you mentioned Phila. I am about an hour north. Im being treated at Lehigh Valley Hospital in Allentown. There is a large cancer center at the hospital on their Cedar Crest Blvd branch. Several other local OCf memebrs have been treated there as well.

Wishing you all the best with all the difficult decisions coming up. Saying prayers and wishing your mother the strength she needs to battle this awful monster.

debandbill- Just checked with my Dad and I have it confused. The first time we weren't told a stage and that was only a surgery. The second time was Stage IV and that was the ND surgery, chemo, and radiation. All the surgeries were done at MSK, but the chemo and radiation were closer to where we are from (central NJ).


ChristineB- Thanks, I've actually read a decent amount of your posts and it's been impressive to see how you managed to stay tough.

The worst part about all of this is that her spirits have been so down b/c of the radiation side effects, and now we were hit with this. Just hoping she stays motivated to fight.

We are going to try to schedule an appt with the Cancer Center of Philadelphia and see what they think. It just worries me that our doctor is only listing chemo alone as the possible treatment, and how grim his outlook seems to be.

OK,

Josh, sorry, I was kind of abrupt with my question but needed the sequence of events to help me and everyone else give some intelligent answers. We are all so sorry that your Mom is facing this recurrence - I am sure it is so very hard to get that news.

SK is well respected but everyone here would encourage you to get that second opinion. I think you just keep trying until there are no other options.

Best of luck in all your endeavors to support your Mother...I know she appreciates it.

Deb

Josh, Im sure its quite a shock to your mom. I would be to anyone. When someone goes thru treatment and it comes back is devastating. It just seems like you cant catch a break. Its understandable that she is feeling down. Is there anyone at the hospital she can talk to? Most cancer centers have special therapists who work with cancer patients. Please ask the doctors or nurses to lead you in the right direction for someone there to talk with. There might even be a cancer support group there.

Wishing you and your mother all the best.

Thank you both for your support. We spoke with her chemotherapy and radiation doctors, and they both said that the cancer is in her blood stream now and is not cureable. The goal now is to control it and provide the best quality of life possible. We are going to go to the Eastern Regional Medical Center (affiliated with the Cancer Treatment Centers of America)in hopes they disagree, but I don't think it's likely.

I just cannot believe how this all went down. My mom has never smoked a day in her life and rarely if ever drinks. She's only going to be 59 at the end of the year and has had 2 recurrences in under a year. I guess now all I can do is pray the hospital in Philly has some sort of hope for us.

Good luck to you both in your fights as well.

Josh,

So sorry to hear about your mom. It's always devastating to hear this news. Our situation is just the opposite. I am the caregiver to my daugher who is only 34 now and is healing from her second occurance and I am praying every day that we get through this. She also never smoked and rarely drinks but somehow this disease has no mercy or conscience it just strikes. So we have to strike back with everything that within our grasp for knowledge and the help of others who have gone through it or going through it. Keep up the good fight.

I will be praying for you and your mom as you continue your fight and God bless.

Bonnie

So we just got PET results. Apparently the cancer has spread to the base of tongue again, the lymph nodes in her neck, the skin by her neck/face, and her lungs.

The Eastern Regional Cancer Center is going to start treatments of Erbitux and Taxol once a week. They are hoping that in conjuctions with their other services (mind/body therapy, nutrionists and naturopathic therapy) will shrink the tumors and then maybe they can look into ways to treat locally if successful.

It's upsetting to hear all this, but at least there's hope again, even if it's just a little bit.

Anyone have experience with Taxol/Erbitux combo?