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Joined: Mar 2006
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Hi. I'm Hillary and my husband, Jeff, was diagnosed with scc in one lymph node with unknown primary about 18 months ago. Had a modified neck dissection at that time but no radiation. Was not having radiation a mistake? Can't look back. In December 2005, bimonthly monitoring revealed a small (less than 2 cm) tumor at the base of his tongue. Biopsy in January confirmed it was malignant. A petscan did not reveal any spread of the cancer beyond the tumor on his tongue.

We got three opinions re: treatment and were totally confused. All said my husband needed radiation to both sides of his neck and base of tongue. One (Greater Baltimore Med. Center) said to add carboplatin and taxol. (Husband is deaf in one ear so cisplatin was immediately ruled out due to high incidence of negative effect on hearing). One (Johns Hopkins) said that he needed no chemo but if he was going to have any, the carboplatin and taxol combo was way too toxic and he should maybe just have the carboplatin or maybe just Erbitux. The third (Beth Israel) kept changing their recommendation. First they said just radiation, then radiation plus unidentified chemo, and finally external plus internal (brachytherapy) but no chemo.

We were totally confused. (Wish we had found this board back then). Having to make a decision, we went with the cancer care center we felt most comfortable with - Johns Hopkins and the radiation (IMRT with a special Tomo machine), plus the Erbitux. He's also getting amifostene to protect salivary glands. Jeff is nearly three weeks into it and doing pretty well. He just quit work. (He's a P.E. teacher and was feeling too tired.) Had a feeding tube put in before radiation started, but is not using it yet and hasn't lost any weight yet.

I am beset by doubts about whether we made the right choice of treatment this time. Everyone says you only have one chance to get it right. But doubts aside, we are doing pretty okay I think. Jeff is a good patient and religiously follows all the directions about caring for his teeth, flushing his tube, drinking water, watching his nutrition etc., and his spirits are good. Kids appear to be handling it better than I would have expected, despite preexisting anxiety disorder of one daughter and unusual sensitivity to all things medical on the part of the other. I am okay, unless I get super tired - like this past weekend when an unexpected visit to the emergency room (because Jeff was running a fever) kept me up until 3 a.m. The result was that I, who ordinarily never get sick, came down with the flu. So, I'm home sick from work, trying to stay away from Jeff, and typing this e-mail.

I'm grateful to have found you all. I know I will be turning to this board often as we go through this journey and hope I, in turn, can be there for others.

Joined: Jul 2005
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Hi Hillary --

My husband Barry was also treated at Johns Hopkins and got carboplatin and TomoTherapy-- he also got a PEG and never used it but that was the exception. He is now 6 months' out from end of treatment, has had two PET/CT scans -- all clear, no sign of cancer -- and we met with our RO (your RO, too I'll bet) and he was very pleased with his progress. We also were told that if Barry were starting treatment this month, rather than last August, he also would have gotten Erbitux and tomo, possibly plus carboplatin . He took the amifostine all the way through, but not on chemo days to avoid nausea. It was pretty hard but worth it, he has pretty good salivary function now. The carboplatin (given in 7 weekly doses) was a non-issue to him (his words). He had no surgery post-treatment, neither his RO or MO recommended it.

I think you made a good choice for treatment, Hopkins is one of the three top CCCs in the country and we found the staff to be almost universally caring and approachable. I think the ability to ask questions and get straight answers is very important -- so don't be afraid to ask them!

Our nurse says that, in her experience, the patients who are best at following the instructions for oral care etc. during treatment tend to do the best. So congrats to Jeff on being a good patient!

I will send you a private message in case you'd like to call us and compare notes -- we are asked not to discuss specific doctors etc. on the Forum.

Gail


CG to husband Barry, dx. 7/21/05, age 66, SCC rgt. tonsil, BOT, 2 nodes (stg. IV), HPV+, tonsillectomy, 7x carboplatin, 35x tomoTherapy IMRT w/ Ethyol @ Johns Hopkins, thru treatment 9/28/05, HPV vaccine trial 12/06-present. Looking good!
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Hi Hillary,

My husband was diagnosed November 2005 with stage 3 SCC in 1 lymph node unknown primary. No neck dissection, Dr said (if I remember correctly) if it had been found in more than 1 node he would have done it. He had 6 weeks of Carbo/Taxol, then 39 radiation treatments with 2 treatments of cisplatin/C5FUs 3 weeks apart. Your husband sounds like mine as far as caring for himself. Mike made sure he was ALWAYS well hydrated...he also had the tube which we are so thankful for even though he was able to eat (sometimes not much) throughout treatment. He also had ethyol and stuck with every dose but one when he had an infection, although he did get sick from it a few times. Good luck.


Caregiver to husband Mike SCC Stage 3 no primary/Carbo/Taxol 2 Cisplatin/C5FUS/39rad/finished 3/15/06
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Hi Hillary,
My Dad just began treatments for unknown primary. He had a neck dissection first and the size of the infected node was 4 cm. They said it could possibly be two nodes but all others were clear. He is on Erbitux once a week and began radiation this week. They are radiating both sides and all other possible areas. He is also taking the Amofistine as is doing ok but of course we just got started. Keep in touch as it seems we are going through this together. My Dad was in excellent health prior to this and has never smoked.


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
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Hillary, Hi. Wish you, Jeff and your kids weren't having to go through this. How old ae they? You are really going to need to be dedicated to keeping yourself in good shape because you've got a tough job! I don't think it is good for you to dwell on "only one chance to get it right". You are at a great Cancer Center and should be getting the best professional care. Just keep talking and learning and being proactive for Jeff. Hang in thee. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Hi Gail, Sue, Jessica and JAM,

Thanks for the words of welcome and votes of confidence for our choice of cancer treatment center. I'm taking seriously all the advice about trying to keep myself healthy, but finding it easier said than done.

JAM used asked about my kids and their emotional well-being is a huge concern of mine. My oldest is 17, a graduating senior, who has been suffering from panic attacks for about 15 months now. She had her first attack a few months after Jeff finished treatment for his first round with this cancer. (Coincidence?) Anyway, we've been getting her help (meds and counselling), trying to get her in good enough emotional shape to make the transition to college next year, and she's been doing fairly well, experiencing what I assume are normal worries about her father's health, as well as her own, (i.e., if Daddy has cancer maybe I do too), but last night had her first mini-attack in a while.

As for my younger daughter, she's 14, and is a very self-contained person. It's truly hard to tell exactly how she is doing with all this. She's complaining about being tired seems to be losing interest in school, which she used to really like. But, then again, she is in her last year of middle school, with one foot out the door.

I'm just so concerned about how all this will affect my kids, I may sometimes be guilty of seeing more than is really there. After missing the development of the anxiety disorder in my eldest for a while, I don't want to overlook any emotional issues for them. P.S . Can you tell where my eldest gets her tendencies for anxiousness from?

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Hillary,
I don't have any wisdom on the choices you were presented with and ultimately made. I'm brand new to this, having just posted for the first time earlier this week. I've got a stage 2/3 (depending on which doc I talk to) SCC tumor in the base of the tongue, Rt. side, too big for sugery. I'm starting radiation and Cisplatin chemo next week. I got my feeding tube last week in preparation.
I was interested in seeing that Jeff is taking the Amifostine, as they are planning on trying that with me. Apparently many cannot tolerate it but it sounds like he's doing ok with it?
Pretty much everybody on here has more experience and knowlege on this stuff than I do - I was only diagnosed a month ago. But I wanted to wish you and your husband well and hope to hear more about his progress. I'll only be about a month behind where he is in treatment. You'll find that most folks on here will offer the same, but you're welcome to contact me if you want to share notes or experiences.
All the best...
Steve


Age 41 - Stage 2 SCC tongue Dx 2/06. Cisplatin x3, IMRT x35. Mets to neck node discovered 7/07. RND 40 nodes removed, margins not clear. Cisplatin, Taxotere, 5-FU Fall 07, then IMXT/Erbitux for 7 wks. Inoperable mets to both lungs and pleura Dx Oct'08. 4 cycles Carboplatin, Erbitux, 5-FU so far.
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Oh my, Hillary, 2 teenage daughters, hormones flowing everywhere eek It sounds like you are on the right track by recognizing what fears the girls may have about Jeff-voiced or unvoiced. A good counselor-psychologist-listener will help them both. I have told our 14 yr. old grandson, who lives with us that John's cancer is a serious disease that we are all fighting as hard as we can. I have also told him how much it hurts me to see John go through the pain associated with the treatments and that it is indeed scary at times. I have asked him to help me[in fact have given him new assignments around the house to make him feel more a part of things, we've been dealing with this since March a year ago.] I have also warned him that John and I both may be short tempered or grumpy at times and that he is not to blame for that[unless his room is a wreck or homework is not turned in] We try to talk alot about what is happening in his life at school. Hope some of this helps. Amy


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

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Hi Hilary, and welcome.

My entire family was with me when I was diagnosed. We were all in a state of shock. It was the first day of spring break and we were leaving for a cruise the next day. I had a senior in high school and a sophomore. My then 17 year old was the most self absorbed child you could ever meet. She was also my best care giver. My 15 year old wears her heart on sleeve like her mom and had to toughen up. She pulled away from me somewhat during my treatment, probably waiting for the other shoe to drop as I was. Three years out we have all survived and thrived and are closer than ever. DH was and still is my biggest champion and possibly pushed me a little too fast in my recovery but, hey, the cancer is gone so you're healed, right?

We had our drama scenes "Mom might be dying, could you PRETEND that you care?" and the "I am packing my cheerleading bag and getting out of here..." but we all survived it, and developed some new family traditions from it. My favorite? "FLIPPING" - Joining mom and dad in their room on the king size bed and watching TV together as a family, flipping refers to when my husband has control of the remote. This grew to include their friends, boyfriends, whomever was around and was the best therapy ever. Still is! American Idol and mom and dad's room is the place to be!

Best to your family in what you are facing,

Sincerely,
Lisa


SCC Tongue T1N0M0\Dx 3-10-03
Hemiglossectomy, alloderm graft, modified neck dissectomy 4-14-03
3 Year Survivor!
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Lisa...........American Idol and mom and dad's bedroom..............your house sounds like mine! My husband upgraded to a huge plasma in the bedroom in January and when Idol is on, they all come running. Good thing we have a big bed. Chris is our favorite so far.

Hillary, we are here for you and your family. I have 7 kids so know how you are feeling. Be straight up honest with them and it will work out. At times, they will even be there when YOU are in need. Kids have more strength then we realize.


SCC Left Mandible. Jaw replaced with bone from leg. Neck disection, 37 radiation treatments. Recurrence 8-28-07, stage 2, tongue. One third of tongue removed 10-4-07. 5-23-08 chemo started for tumor behind swallowing passage, Our good friend and much loved OCF member Minnie has been lost to the disease (RIP 10-29-08). We will all miss her greatly.
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