| Joined: Apr 2014 Posts: 1 Member | OP Member Joined: Apr 2014 Posts: 1 | I'm Suzanne, age 44. I am retired military. I am the caregiver for my husband, Stacy. Stacy, Dipped & Drank � Quit when diagnosed, age 51 at DX by dentist, SCC stage 1 - R cheek & R molars 5/24/13, TX: Surgery by Oral Maxillofacial surgeons 7/17/13 - SCC stage 3a, removed 6 teeth, removed tissue to jawbone, removed a third of jawbone, titanium plate add to jawbone, 20 lymph nodes removed - 4 positive, skin graphed from wrist to mouth. Surgery 7/20/14 skin graph failed inside mouth. TX: 9/3/13 Chemo once/week & radiation 5 days/week for 6 weeks. Surgery 9/19/13 feeding tube placed in stomach. 1/10/14 feeding tube removed. Stacy returned to work 1/16/14 On 3/1/14, I took Stacy to the ER because his face was swollen. Hospitalized 3/1/14 to 3/8/14 TX: Surgery 3/5/14 jaw infection & jaw fracture � titanium plate replaced with a bigger one & cadaver bone placed over fracture. DX: 4/1/14 SCC reoccurred as skin cancer. 4/8/14 PETscan, TX: 4/10/14 bio-therapy, 4/11/14 second opinion by ENT dr.
I'm so nervous for this PETscan. I've been asking the doctors to do a PETscan for awhile. Cancer runs in my husband family, his mom died from colon cancer in 2006. My husband has lost 60 lbs and eats like a bird. Very, very picky eater even before the cancer. I stay on him about drinking water or fluids intake. I feel very bad that I have to stay on him to eat & drink, its very frustrating for both of us. I'm trying to get a feeding tube back in him. I'm as well as my husband are sad, scared, nervous, angry & frustrated that he has to endure treatment again!! I'm here to get support to help care for him. We were married June 2012. :(I'm not ready lose him to this!!
Suzanne - caregiver of my husband Stacy with stage 3a SCC
| | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 10,507 Likes: 7 | Welcome to OCF! Im so sorry to read of what your husband has been thru!!! Reading your post gave me chills as its the most similar to what I have been thru myself. This disease can be relentless.
Sounds to me like your husband needs to get the feeding tube ASAP. He must begin to get his body built up for what he is about to face again. Push the doctors to get this done right away. A squeaky wheel is what it takes sometimes. At the very least, get him to drink drink supplements like boost or ensure.
I hope to give you some hope. I know the future doesnt seem very bright right now but please do not ever give up hope. When I was at your point with my third round, I almost quit and didnt seek treatment. But luckily the great people of this forum convinced me not to quit. Thats the reason Im still here today, I kept going and you both need to as well.
Is your husband being treated at a comprehensive cancer center (CCC) or a top hospital? If not, he should go for the very least a second opinion.
Best wishes!!!! ChristineSCC 6/15/07 L chk & by L molar both Stag I, age44 2x cispltn-35 IMRT end 9/27/07 -65 lbs in 2 mo, no caregvr Clear PET 1/08 4/4/08 recur L chk Stag I surg 4/16/08 clr marg 215 HBO dives 3/09 teeth out, trismus 7/2/09 recur, Stg IV 8/24/09 trach, ND, mandiblctmy 3wks medicly inducd coma 2 mo xtended hospital stay, ICU & burn unit PICC line IV antibx 8 mo 10/4/10, 2/14/11 reconst surg OC 3x in 3 years very happy to be alive | | | | Joined: Jul 2012 Posts: 3,267 Likes: 1 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jul 2012 Posts: 3,267 Likes: 1 | Welcome runtowin, and sorry you had to join under these circumstances. A number us here had recurrences, including myself with 7, and hopefully 7 is my lucky number. I lost 110lbs just from chemo, needed a peg, and had it removed 7 months later, after being NED, but then had a recurrence a month later, so I had another one put in, which I have since kept, although I'm not tube dependent now, I used it to supplement my diet during several other subsequent treatments. In the past I used Marinol to increase my appetite, it's also helps with nausea, and other ways to gain weight, which enabled me to gain back 70lbs at one point.
Good luck with the PET today, bio-therapy or immunotherapy, whatever the type, and 2nd opinion with the ENT. I don't see radiation, and maybe it's not possible or planned?
10/09 T1N2bM0 Tonsil 11/09 Taxo Cisp 5-FU, 6 Months Hosp 01/11 35 IMRT 70Gy 7 Wks 06/11 30 HBO 08/11 RND PNI 06/12 SND PNI LVI 08/12 RND Pec Flap IORT 12 Gy 10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux 10/13 SND 10/13 TBO/Angiograph 10/13 RND Carotid Remove IORT 10Gy PNI 12/13 25 Protons 50Gy 6 Wks Carbo 11/14 All Teeth Extract 30 HBO 03/15 Sequestromy Buccal Flap ORN 09/16 Mandibulectomy Fib Flap Sternotomy 04/17 Regraft hypergranulation Donor Site 06/17 Heart Attack Stent 02/19 Finally Cancer Free Took 10 yrs
| | | | Joined: Dec 2010 Posts: 5,260 Likes: 3 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | "OCF Canuck" Patient Advocate (old timer, 2000 posts) Joined: Dec 2010 Posts: 5,260 Likes: 3 | HI there welcome... and very sorry you have to be here. This cancer can be cruel. I know the sometimes use a bone from the patients leg because it has less of a chance of rejection. Mind you infection can happen any time...
That is all unimportant at this moment as hindsight is 20/20. Though I do believe overall health and nutrition do play a role in healing and immunity, and fighting this cancer.
Christine has been through a recurrence 3 times and has had similar issues - Jaw, gum etc.. she's an amazing resource.
She is also right about the squeaky wheel. MAKE NOISE. I'm not sure when his PET is... but if it's more than a week away, push to have it moved up. Call them tell them you are available to bring him if they have a cancellation at any time.
Get a second opinion set up as close to you next drs. appointment as possible. That way you are not waiting. Time is of the essence here. I know people are always saying... cancer doesn't move that quickly. That's crap. It depends on the aggressiveness of the cancer. We are independent biological entities. In the course of a day our cells are growing, dying, changing constantly. Metabolism has a lot to do with it.
So you want this dealt with as soon as possible.
If you are not at a CCC please make sure your second opinion is at one, preferably by a top ENT. This will afford you the best care possible.
Also do not wait more than 24 hrs for the scan results. If your scan isn't before your next drs appointment. Then make sure you have another in place the day after.
You and he can do this. There are several people here who've had multiple recurrences and are thriving.
Do get a tube into him ASAP. In the interim - try making him protein shakes to boost his weight and immune system. You can add some boost to them or have him have it on it's own. Hugs and again... welcome.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | Joined: Jan 2013 Posts: 1,291 Likes: 1 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2013 Posts: 1,291 Likes: 1 | Welcome to OCF, runtowin. So sorry for the first bout and now the recurrence. Cancer is an evil thing and one hopes to keep it away. There is lots of support here as you have already experienced. Please come often as you want. Don
Don Male, 57 - Great health except C Dec '12 DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes 1 tooth out Jan '13 2nd tooth out Tumor Board -induction TPF (3 cycles), seq CRT 4-6/2013 CRT 70gr 2x35, weekly carbo150 ended 5/29,6/4 All the details, join at http://beatdown.cognacom.com | | | | Joined: Apr 2013 Posts: 319 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Apr 2013 Posts: 319 | Hi Suzanne,
First, an old paratrooper says thank you for your service.
PaulB (posted above) is the recurrence king, he's had 7 recurrences. I've had 5 since 2/12. I just finished a 3 week course of (X-)radiation for #5, on top of a liver full of tiny beads, each of which has a beta emitter (Yttrium-90) at the core.
I am truly sorry to read that your husband is now a member of the recurrences club, he and you have surely suffered enough and to be hit with this so soon after going through that horrific experience. It is truly not fair.
But, that said; as with all things in this life, it is what it is and what it is, is your reality.
Please do not take offense when I speak frankly here, but an outlook change is in order once your receive your membership in this exclusive club. When it comes to treatment, forget concepts like "want," or "prefer" or (especially) "endure." That's not the canonical list, but it'll do as a starting point. This is war, and needs to be treated as such; those words are for more civilized activities where "choice" has meaning.
Your husband's mission and duty is not just to survive this disease, but to grab it by the throat and choke the life out of it! This can only be done by getting the best treatments available and by doing those things necessary to support healing.
Adequate nutrition (min 2500 calories/day for whatever source;) adequate hydration (absolute min of 48 Oz/day) and adequate rest.
Avoid sugar and stress to the maximum extent possible.
I hate to sound like a Pollyanna, but orienting your mind-state to focus on the positive and eliminate the negative is vital. Mind-state has a large effect on survival of life-threatening events, and you both need yours giving you every boost possible. Negative mind-states feed the monster by creating and feeding stress.
A very important component of this is to avoid attaching to outcomes. What you want to do is identify the things you can do, and do them; after that, do not attach to the outcome but just accept whatever it is.
You'll have already done what is possible, and that outcome will be whatever it will be. Energy expended on wishing is wasted, and energy in this battle is a Zero-sum game. You can't afford to waste ANY of it!
You already know that going through this process will come at a physical (and emotional) cost; you want to minimize this (emotional component) and the way to do that is change your perspective from what has been lost, to how you can use what you have left to do what you used to do with the bits that fell off when you hit that pothole.
If you read my intro, you can see a bit more about this. No matter what you have lost, something remains. Defeat is a mind-state and has no place in this battle.
It will require focused intent to overcome the negative mind-state which is the natural reaction to adversity and can be summarized as "the woe is me"s; but it must be done. Be vigilant, let your inner voice be your drill sgt and direct your thoughts and attention to something . positive. Give some thought to this and plan ahead because this is not horse-feathers here, this is real and important. It works, both positive and negative, so reinforce the positive and avoid the negative.
And most of all, my very best wishes for a successful outcome and a long happy life together!
Bart
My intro: http://oralcancersupport.org/forums/ubbt...3644#Post16364409/09 - Dx OC Stg IV 10/09 - Chemo/3 Cisplatin, 40 rad 11/09 - PET CLEAN 07/11 - Dx Stage IV C. (Liver) 06/12 - PET CLEAN 09/12 - PET Dist Met (Liver) 04/13 - PET CLEAN 06/13 - PET Dist Met (Liver + 1 lymph node) 10/13 - PET - Xeloda ineffective 11/13 - Liver packed w/ SIRI-Spheres 02/14 - PET - Siri-Spheres effective, 4cm tumor in lymph-node 03/15 - Begin 15 Rads 03/24 - Final Rad! Woot! 7/27/14 Bart passed away. RIP!
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