| Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Rachael, your mom is going to have a rough time from the rads and chemo as well as her war with this stuff. If it will help take recoedwe ith you to the appts and that way you can hear for sure what was said. Get her involved with this site like they are telling you, It will help her to understand better. Good luck
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
| | | | Joined: Jun 2009 Posts: 17 Member | OP Member Joined: Jun 2009 Posts: 17 | cecilia, thank you, that makes feel a little better, I guess I'm just looking for some ones mistake and not the fact that it could just be that aggresive in spreading so quickly. We have been just going through all the phases which I'm sure you all know well, anger, sadness, hope, and so on.
Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come. mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11
**let good prevail over evil**
| | | | Joined: Jun 2009 Posts: 17 Member | OP Member Joined: Jun 2009 Posts: 17 | Suzanne, I have thought of that, but unfortunately they don't have a computer, I wish they did, they could find so much valuable info, and support here. I did tell my sister about it, because it's me, her, my dad and mom in our little circle of this, so any info or suggestions we may get to help my mom through would mean everything.
Thanks again! Rachael
Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come. mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11
**let good prevail over evil**
| | | | Joined: May 2008 Posts: 357 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: May 2008 Posts: 357 | Hi, Rachael -
I'm so sorry that you have received such hard news about your mother. You may never find answers to the questions of how and why her cancer came back so aggressively and quickly, and that can be as hard to take as the diagnosis. Please take care of yourself, as you and your family will be facing some rough times.
This is the right place to be for support and ideas on how to cope with treatment. In the meantime, you are in my thoughts and prayers.
Marlene
Marginal mandibulectomy 6/17/08 resulted in DX of Stage I SCC - gingiva (3 mm) right mandible, buccal side. Clear margins. Occasional social drinker. Smoked last cigarette in 1979. Clear pet: 12/08; 7/20/09. Yay!
| | | | Joined: Jun 2009 Posts: 17 Member | OP Member Joined: Jun 2009 Posts: 17 | Thank you every one for all your input, margaret, wanda, christine, Angelia, and EzJim.. all your thoughts mean a lot. I really have no idea what we are in for with her treatments, as I mentioned, her first round was 4 years ago and just involved surgery. As I have read, and from what the doctors have said, I know it's going to be a long hard road.. but I have also seen people beat the odds and thats what I'm hoping for. My mom however, is very emotional sometimes we can't even talk. My kids want to see her, but she doesn't want to see anyone, she said it hurts too much to see them and "know" she won't be with them for a whole lot longer. hopefully she will over come at least that part and let all of us be there for her.
Thanks again everyone, and I want you to know my path travels both ways, as all of you are now in my prayers also, wether it be to stay clean, or help getting through whatever you may be going through
Rachael- daughter 53 year old mom at stage IV oral in jaw bone and has mestasized though lymph nodes, shoulders and spine..... more details to come. mom now 55 and has metastized to chest and liver, has stopped all treatments and meds 7/12/11
**let good prevail over evil**
| | | | Joined: Jul 2007 Posts: 211 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Jul 2007 Posts: 211 | Hello, Rachael,
I am so sorry for you and your mom and family. It must be such a shock that she could have regular checkups and this extensive spread was missed. I know what you mean about wanting to understand how this could have happened and been missed. There are others on this board who thought they had beat the monster and then were faced with a recurrence and they might be of great help to you. One of the most difficult things I have in the back of my mind is that this could happen to my husband and it would seem shocking, very painful and unfair because he seems ok now and we have done all of the right things with his treatment and followup just as your mother did. Your mother must be in a state of shock and so distressed so I hope she will let you and your family in more as she begins treatment.
My thoughts are with you and your family - 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
| | | | Joined: Jun 2007 Posts: 595 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jun 2007 Posts: 595 | HI, Soory about your mother and family. This the place for unconditional support, hope all goes well and wishing you and your family the best. Semper-Fi 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 !!!
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Rachael,, that weird looking word was supposed to be take a recorder LOL I flunked typing
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
| | | | Joined: Sep 2008 Posts: 711 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Sep 2008 Posts: 711 | Hi, Rachael. What a thing to have droppped on your family. Your Father may want to be the main caregiver but he will need all the help he can get, it sounds like he is very distaught and may have as hard a time as your Mother following everything the dr.s will be saying. Get her to eat as much as she can while she can. R/T messes up the sense of taste and salivary glands and makes it hard to swallow. Most of all, give her hugs, from you, from me and, I feel safe to say, from everyone here.
David R. 65 yr old male non-smoker, light drinker, stage 3 or 4, depending on which doc you ask, scc rt. tonsil, 2 nodes, 7 weeks radiation and chemo. No surgery. Teatment ended 3/20/08. PET scan 8/08 showed no cancer. And now, as of oct, 2010, caregiver to wife, Linda, with breast cancer. May, 2013, Linda diagnosed with stage 3 ovarian cancer. Enuf already.
| | | | Joined: Aug 2008 Posts: 238 Gold Member (200+ posts) | Gold Member (200+ posts) Joined: Aug 2008 Posts: 238 | Rachael, I'm very sorry to hear of your mother's news. My mother is going through her 4th round with oral cancer - this last time it's in her neck. When I first came to this website I looked around a good while before I started posting. All of this was so new to me - a bit scary but very informative. Since I started posting I have found nothing but wonderful people who are eager to offer explanations, advice and support. This is a great site and the others are right - your mother would benefit from posting here. If my mother had access to a computer, I would definitely introduce her to it. Take one day at a time and make it the best you can. I will be thinking of you and your mom and watching for your updates. Take care.
Nancy T
CG/Mom: 5 1/2 years SCC upper palate,4 recurrences, surgeries, chemo & radiation. Mom went to Heaven 1/21/11. | | |
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