#23791 07-16-2007 11:50 AM | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hi- I joined this board because my husband was diagnosed with SCC (Stage IV, T4, N1, M0) late May and he began treatment on July 10th. Just as many of you have described, it took a while for him to get diagnosed and then seemed to take forever (waiting is so difficult) for him to actually begin treatment! Soon after noticing a lump near his jaw and experiencing minor ear pain, he saw his regular dentist, an oral surgeon, and then an ENT and none noticed anything that concerned them. He insisted (to the ENT) on getting an MRI and it showed a mass which was later biopsed and shown to be Stage IV SCC. He saw the oncologist soon after getting the results of the MRI, the oncologist put a flexiscope down his neck and the tumor was extremely visible- even to me. We've asked ourselves so many times since then why the ENT did not use a flexiscope or really examine him or suggest an MRI. So, we are dealing with sadness, anger, fear and so many other emotions.
One question I have is whether any of you have had induction chemo prior to beginning concommitant radiation/chemo? My husband is going to have two cycles (over 6 weeks) of chemo consisting of cisplatin, taxotere, along with five days of 5 FU on weeks 1 and 4 and then 7 weeks of radiation concommitant with cisplatin and maybe another type of chemo. The first week got pretty difficult as he began to feel pretty awful about the time he finished with the fifth day of 5 FU.
Because we will have 13-14 weeks of continuous treatment (and we're just beginning Week 2), we're both wondering how to get through this the best we can.
Thanks - Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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#23792 07-16-2007 12:19 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Hi, Sophie, Induction chemo seems to be part of the protocol for a good many people. Where is he being treated? As to getting through it- are you working? Because if you are, you will need to get super organized [and probably need take time off to be with him during tx.]. There is lots of practical info on the "How to get through it" on this forum.[real life issues stuff] If you'll tell us what seems to be the most challanging, you'll get some good help.In fact, you'll get good help with all of your questions, so stick with us. Amy in the Ozarks
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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#23793 07-16-2007 12:30 PM | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hi, Amy,
He is being treated at Johns Hopkins which is about an hour from our home so that's not too bad. I do work full-time but am more flexible in the summer and I'm finding that so many appointments take longer than expected. Today he went just for a chemistry panel and neulista (sp?) and ended up there for 4 more hours for IVs and anti-nausea medication. I have gone with him for all appointments so far and will go most of the time. We have lots of friends who have volunteered to drive him (and sit with him) at least once during his treatment so this will be so helpful when I cannot go because of another commitment. I have known people a fair number of friends and family who have gone through other types of cancer treatment and very few seem to match oral cancer for it's challenges due to problems with eating, swallowing, etc. I thought I was prepared as it took quite a while to get going with the treatment but the reality is quite daunting! I've read some of the posts and ideas on coping but will spend some more time looking those over.
Thanks- Sophie H.
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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#23794 07-16-2007 12:55 PM | Joined: Apr 2005 Posts: 2,676 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Apr 2005 Posts: 2,676 | Sophie, if you haven't found it yet, go to the top of this page and click on the patient forum button- it will give you a list of forums- scroll down to the "Getting through it" project. You will need to start setting up charts for both of you to use-appts- meds-nutrition and liquid intake - weight- blood pressure- etc. Don't know what your Ins is like, but there have been some really good posts over the last few days on handling Ins EOBs. A major challange in getting through this is good communication with Docs, nurses, etc. You have to ask good questions and be a good listener [especially when your hubby doesn't feel like listening] Sorry to tell you that long hours in waiting rooms, etc. may prove to be the norm. If you can, stock up on household staples and freezer foods that you can easily heat and eat- you probably won't have alot of time to shop when this gets rolling. Allow anyone who volunteers to help with yard or household stuff or errands. You will need to find times to rest too while he is getting these treatments. One is the biggest challanges to caregivers is "trying to cover all the bases". Your most important role is being by his side. Amy in the Ozarks
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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#23795 07-16-2007 01:08 PM | Joined: May 2006 Posts: 720 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | Sophie -- Welcome to the board. You'll get all manner of help and advice here. Just FYI, the husband of Gail Mac, a regular poster here, was also Stage IV and also successfully treated at Hopkins, where he is now part of an HPV vaccine trial. (My husband is seen at Hopkins as well, but his cancer was caught extremely early so he didn't have chemo or radiation.) You can search for her postings -- which include icons for e-mail or private message -- using the search link at the top of these pages. Keep coming back -- the folks here are the best. -- Leslie
Leslie
April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
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#23796 07-16-2007 01:45 PM | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | Sophie, I started a similar protocl today at the Norric Cotton Cancer center. This week I started with a med-port and recieved Docetaxel and Cisplatin follwed by 5FU for 96 hrs. 2 week break and start all over again. I am doing 3 cycles followed by 7 weeks of Rad with Cisplatin during the 1,3, 5 weeks. This is because the tumor in my left neck measures 6 cm in length. this was deemed the best way shrink it for RADX Bob
Bob age 57, non smoker,non drinker, ended treatment on 11 Nov 2007 and started back to work on 29 Nov 2007. Veterans Day 2012 the Battle was lowered, folded, Taps was played and the Flag buried as I am know a 5 year survivor. Semper-FI !!!
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#23797 07-16-2007 03:47 PM | Joined: May 2007 Posts: 16 Member | Member Joined: May 2007 Posts: 16 | Sophie, We had a case manager from our Ins. Co. which was a great help when we had problems with getting coverage for my husbands food. We finished on May 31, 2007 with 31 treatments of Radiation. He did 5 days for 2 wks of chemo along with his everyday radiation.
CG to husband Larry 61,T1,N1,MO Squamous Cell Carcinoma of the Tongue.
CG to Larry 61, 1st Dx 8-18-06 TlNoMo SCC Right Lateral Tongue- second Dx 1-25-07 Right neck dissection-T1N1Mo. Treatment started 3-20-07 Radiation & Etyhol Finish 5-31-07
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#23798 07-17-2007 07:52 AM | Joined: May 2007 Posts: 622 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2007 Posts: 622 Likes: 1 | Hi Sophie
I had the induction done, three treatments almost the same as what has been prescribed for yall. I had surgery after induction to remove, then I started the RX treatments (35 IMRT).
I had it easy up until the Radiation. That was by far the worst part.
So far do good. I finished RX treatment back mid December 06 and have had clear PET and CT scans done since.
Kevin 18 YEAR SURVIVOR SCC Tongue (T3N0M0) diag 06/2006. No evidence of disease 2010 Another PET 12-2014 pre-HBO, still N.E.D.
�Remember to look up at the stars and not down at your feet. It matters that you don't just give up.� Stephen Hawking | | |
#23799 07-23-2007 03:59 PM | Joined: Apr 2006 Posts: 583 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Apr 2006 Posts: 583 | Hi Sophie,
Welcome to OCF. I just read your blog. WOW girl you have really been around the cancer situation. I can understand your feeling and concerns.
Everyone goes through treatment differently. I hope he will be one of the lucky ones that will have minimal effects. Some do you know.
We are all here to help you and husband walk down the road. So you are not alone.
Take care Diane
2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
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#23800 07-28-2007 06:50 AM | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | thanks to everyone for responding to my original introduction post. I emailed some of you who had emailed me and your caring comments and willingness to discuss your own experiences have been so helpful getting through these first few weeks. I am much calmer now and although I am still focused on the treatment phase of what my husband and I will be going through, I am now able to see that the recovery phase will be a challenge as well. However, I know I will find the help we need on this board.
Thanks- Sophie
Sophie T.
CG to husband: SCC Stage 4, T4, N1, M0; non-smoker and very light social drinker; HPV+ induction chemo begun 7/07; chemo/radiation ended 10/10, first cat scan clear; scan on 5/9/08 clear, scan on 10/08 clear; scan 1/09 clear; scan 1/10 clear; passed away July 2, 2016
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