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Patty - When my husband initially was diagnosed there was question as to mets in liver and hip (long story there). Since we were having a meltdown as to whether or not there were mets, and therefore didn't have a clue as to what path to take, our rt guy explained that the Erbitux would keep things as they were pending the remainder of his treatment. The chemo nurses told me that they had several patients coming in for Erbitux for extended periods of time to basically hold things "in check". Being new to this I don't know if this is true, or if we were being patted on the head but I'm sure there are those on this forum that will chime in. As it turned out, there were no mets. Being the caregiver, and having been the caregiver in other situations, I would be pitching a fit until I got a scan. Insist, demand, do whatever it takes for you to be comfortable that you are getting the answers you need. If I were advocating for myself it would be the same. As far as "no need to spend the money" - it would seem to me that the cost of a scan you want for your own peace of mind is probably a drop in the bucket as compared to the cost of all the other treatment received?!? I know it would be for us. You're in my thoughts and prayers. Good luck with your appointment.


CG to H with SCC BOT T4N2cM0 dx 12/19/08, teeth removed pre-tx; Erbitux & RT-done 3/12/09, PEG 2/9/09-7/14/09; ND 6/16. Pet 6/12-no mets except lymph node in neck removed on 6/16. Chyle leak,2nd surg to repair. Dilate esophagus 4/15/10. Clear PET 12/17/10
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At least there are some people on the same page as me - I am not one to go check to see what the noise in the basement is with a flashlight, but with the right caliber I will go sew what I am up against. I would appreciate more suggestions and yes I will start looking for some one else to give me an opinion that is a doctor.

The social worker from hospice really opened my eyes to some things.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #95352 05-13-2009 06:46 AM
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Patty

Scans are not always necessary or do any good. Despite the hype on PET Scans, none of mine came even close to showing the recurrence of the tumor - only the MRI picked it up as a possibility. I just had another PET scan but that was to stage the CyberKnife radiation sequence, not to check on the Cancer.
My ENT surgeon was and remains better at just looking and poking in finding the cancer than any PETscan, MRI or CT I have had. Erbitux did not do much good for me so it's Carboplatin this time around. I am amazed at how much IMRT radiation sessions your signature line shows. It's a real bitch to have radiation resistant cancer which forces us to surgery. Another doctor is a great idea as they can order up a MRI or CT for you and probably your best option if your current doctor will not reconsider
Sorry to hear about the drainage and wound issues, the frozen petrified neck is not pleasant either. I am now doing "scar massage" on the advice of my physical therapist as well as the plastic surgeon's resident. Nothing fancy or complicated: I will post it in the general section if you are interested
Good Luck and hang in there. It gets so depressing to have the cancer back after all we suffered. As Brian indicates on the summary of this thread, it is a very hard hand to be dealt.


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Good1 #95364 05-13-2009 11:32 AM
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I'm so sorry to hear your news and why does this disease keep coming back,is there any hope ever?


MicheleM
April 05,SCC stage 2, tumor removed under tongue and floor of tongue, full neck disection with numerous lymph nodes removed. No radiation or chemo April 09, SCC stage 2 rt side of tongue 30% rt side removed, radiation will follow
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Patty:
Just some questions to ask:
Erbitux is now being administered with Taxtol. What benefits?
I had induction therapy which was extremely helpful. I've had Cisplatin, 5-Fu and Textera, but there have been studies for other combinations. There was a huge study done (Can't find the name now) of 500+ patients showing good results. Don't know if it is applicable in your case. But maybe one of the questions, you should ask?

Sandy


Sandy 56, BOT SCC Biopsy 1/21/09 Stage 3, T3NXM0.
Finished 3 cycle induction chemotherapy 4/7/09. (Chisplatin, 5-fu and Texotere). Re-staged 4/20/09,(very successful.) Will start Carboplatin/radiation 2 Gy/5 days/7 weeks (Tomotherapy) starting May 4th. Finished 6/22/09.
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Charm,

Thank you for responding to my post. The recurrence is just awful!! Especially knowing that this is it. It will not get better from here.

I had an appointment with my ENT today and she showed me the CT scan that we did In April when we were hopefully that it was a dental abscess and I was able to see why it looked like an abscess. The cancer has actually invaded all the healthy tissue in my right jaw which includes the pectoral flap, my jaw bone on that side, the side of my face and my jaw. I have been thinking that the tumor was something that started out the size of a golf ball and then increased in size. I wanted to see scans or whatever it took to show me the growth so I could understand why my teeth feel like they are moving and my jaw and cheek keep changing the way that they look from day to day. With this big fluid mass of cancer they can not show me something like that. The ENT used a name for it, but because I did not write it down I will have to do some research to come up with it, In a nutshell though she told me that typically this cancer will move to the lungs or the bone and kill you from there. All I can do is wait nd see which one and deal with it.

I will look in the general section for the massage techniques. Anything that I can do that will make me feel better is welcome. I had a very positive meeting with hospice yesterday and it is very different than I had imaginied it. They currently have people in their program that have been there over 4 years. they were very focused on living and not on the dying part which really made me feel better.

Your post also made me feel better Charm. Keep your chin up too and I will keep you in my prayers,

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Sep 2008
Posts: 489
Good1 Offline OP
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Sandy St I will ask my oncologists about the combo of the Taxtol and the Erbitux. My cancer did not repond at all to the Taxtol combined with another chemo prior to this surgery. If anything it grew. I responded horribly to chemo and I was very ill from it. I really think that the chemo might get me faster than the cancer I was that bad off.

Patty


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #95395 05-13-2009 06:51 PM
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Patty I don't have much to say except htis sounds like the Patty I have come to know,, THe fighting one and it seems you have to fight back inside you, Go Girl and give it your best shot..


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
EzJim #95447 05-14-2009 09:36 AM
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Jim

I am requesting a CT scan from omy oncologist. My ENT is still hesitant to give me one. She talked about how much they cost and I'm thinking hey who cares if I know what is happening with me?? She did go over the CT from April and showed me the growth in my neck on it. That was a month ago and I can tell that things are different and I want to know what. Even if I am going to die I want to know what is happening to me. I am afraid a lot lately.

I asked my sister to stay on Tuesday and she did so I got some sleep. Last night I was up all night because I can not swallow or breath very well. It is funny to me that the ENT can tll me that my cancer will usually move intot he lungs or the bone and kill me, but she can not tell me more than that. What I want to know is why my jaw is swllen on both sides and why my neck is swollen and now has stopped draining. It would seem that they could tell me more.

Patty

Last edited by Good1; 05-14-2009 10:17 AM. Reason: Nurse came

48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Good1 #95450 05-14-2009 11:53 AM
Joined: Feb 2007
Posts: 1,940
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Patty robins face swelled to the size of a soccar ball.it is because the lymphatic fluid cannot drain through its usual channels and has no where to go so it seeps into the tissue and causes swelling(oedema).This problem can be rectified quite easily with steroids(dexamethasone)One of the less pleasant problems with a tumour that is growing rapidly where yours is,is that it puts pressure on the trachea(windpipe) and so produces a feeling that you may be choking.I am sorry you are not getting satisfactory information,but i am not sure what benefit you think you will get from a scan,it seems what you need more than a scan is to be told how the disease will progress and the implications.

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
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