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#136699 07-14-2011 05:19 AM
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Rachael Offline OP
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hey everyone, it has been quite some time that I have posted, still read often, but I am at a complete loss at this point. To refresh my story that started almost 2 years ago, my mom was hit for the second time with oral cancer, this time she was already in stage 4 when caught, even after going to all her regular check ups. Anyway, it had metastized to lymph nodes in her neck and moved into her shoulders and tail bone. Since my last post she went through 14 months of chemo which was changed several times throughout, rads twice, once on one side of her neck and about 6 months later the other side and her jaw. just when she was starting to heal from that, back into more chemo, mind you through all this, she lost a ton of weight because she couldnt eat due to her mouth being so sore from rads, so basically was livine on boost, ensure, and resource juice, which even then had a hard time swallowing. Seems this cancer has been very aggressive, and either no response from treatments or little response, but then comes right back. The latest is that she agree to join a clinical trial which sent her to the hospital within 5 days of starting it where she spent 10 days due to a massive infection in her mouth and throat, fevers, and dangerously low white cell counts. while in the hospital they did chest exrays and ultra sounds ov her liver, that is when we found out that this evil thing has now invaded her chest and has also hit her liver. At this point, they took her out of the clinical trials and have stopped all treatments, as they claim there is nothing more they can do for her, her mouth has healed somwhat, and is able to finally eat a little hear and there, but is still losing weight almost daily. We have not been given any type of time line for her, but know that her time is now very limited, I have no idea what to expect now, I have read alot of stories on here about what to look for when the end is near, but still just cant figure it it out, I wish i had even a rough estimate, I know everyone is different and can be impossible to know, but even if I knew if we were looking at weeks, or months ... just somthing. Yesterday, she started going through another phase, which is pushing everyone away, it seems just just wants to be with me father and noone else, she will not allow my sister or I to come visit, and it's tearing up up, I just want to spend as much time with her as I can, just hoping a phase that will soon pass before it is too late. Sorry to go on and on, just hopeing maybe someone might have some insight as to how much time I may have to try to spend time with her, again it has been aggressive, and spread fairly quickly, not much luck with responding to treatments, and now, no treatments at all, as well as losing drastic amounts of weight quickly. would love to hear of any similar stories, or as I said maybe some insight on indications of when time for her to meet her maker may be near.
Thank you so much for reading.


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**
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Wow I am so sorry to hear what you are going through. It's an incredibly painful thing. Your mother has probably known for. While that things were bad - on an inherent level, though it's hard to accept on a mental one. This is probably her time to come to terms with it. Pushing people away is part of that. Sometimes when you are very sick - you just want time to wrap your head around it and you may not want people looking at you knowing youre unwell, and maybe feeling sorry for you, especially after all she's been through already. This may pass, some people get very angry to. It's all a part of accepting it. My mom was told the same thing she'd been given a very poor prognosis from the outset 5% survival rate - lung cancer - and it does respond well to chemo - she did the treatments and some radiation and was good for another 3 years, but lung cancer is cruel and tends to move up to the brain and it did - she was diagnosed with six tumors. Once that happened they said go home and enjoy your time with your family. We told her we weren't going to give up the fight, and were thinking about transferring her to PMH (the cancer hospital I was treated at) but she ended up with a bowel perforation less than a month after was in the hospital and became septic and died within a week. It was a blessing in some ways as she didn't have to suffer with the brain tumors. But heartbreaking for me and my step dad.
I am not sure how long your mom has. only god knows and he will take her when he is ready. Until then spend as much time with her as you can, despite her pain try to make it a good time, and not let this diease rob you of that. Give her a little time and see if she'll let your sister visit. The night before my mom ended up in the hospital she had come over and we'd had a nice family meal. That evening when She arrived. I looked at her getting out of the car and knew that she wasn't going to be here with me much longer. To be honest I still miss her. She was my friend and my mom. Make your final days with her peaceful and not about the cancer leave that in the background. Hugs and much love to you - I know this is a horribly painful time.


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
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Hi rachael. I'm really sorry to hear what you and your family are going through. I always hesitate to respond to posts of this nature because it seems like there should be some words of great wisdom and comfort and I always come up short. All I can do is wish you and all of your family the strength to get through this time.


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.
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Hi Rachael. My heart goes out to you as you struggle through this difficult time of your Mom's impending demise. She certainly has fought with every ounce of her being to this point and now has to come to terms with losing the battle. It sounds like she is trying to protect you and your sister from something she perceives will be a very difficult time. Mom still in protective mode. If it helps you, go to the hospital with your father and have him relay your messages of caring and love and your need to be with her, while waiting for her to be accepting of your presence at the bedside. Hopefully that will be soon. From what you describe of her condition I would think her prognosis maybe short weeks. Is she being looked after now by a hospice team and getting good symptom control? If she is with hospice there will be emotional support available for her, and the family as well, that I am sure will be very helpful in helping you cope with all of this. Wishing you strength and courage to face the difficult days ahead.


Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
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Rachael, I am sorry to hear about your mother's prognosis. I hope that she will allow you and your sister to be with her soon. When my father was dying he withdrew into himself for awhile. I think maybe it's part of the process. My thoughts are with you and your family.


Tracy - 33 at diagnosis
SCC right ventral tongue Dx 4/11.
T1N2M0
1st resection 5/11.
Bilateral neck dissection: 2 pos nodes
2nd resection w/graft 6/11.
Erbitux x 11 completed 9/11. IMRT x 30 completed 8/11.
3 month MRI and PET/CT all clear.
6, 9, 12 and 24 month post treatment MRIs all clear.
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I hate to see yet another have to suffer through this horrible disease! I can relate to some of the things you are going through. I recently read a book mentioned in another post here on OCF, Final Journeys by Maggie Callanon. It really helped me understand what's happening with my husband and gave me insight that has helped me help him and my kids, you may find it helpful as well. Take care Rachael!


CG to sp age 53
4/10 BOT IVb
6/10 Ttl Gloss Lrngectmy L Mndbltmy 5+ Nodes
7/10 Cispl & Rad
1/11 recur lung mets
2/11 Clin Tr Erb Carb 5FU last 5/11
7/11 Tumor growth began wkly Bleo, Taxol, Carbo
10/28/11 Hospice; Passed 11/7/11
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This is a terrible time for you. My guess is that your Mom is handling it better than you are. My mom had this crazy cancer and would find a reason to send the family away so she could have time alone. She told me more than once to take my family and shop or go somewhere and be normal. It was tough but we did it and the day she must have known she was going to die, she said she would live until all of her kids were by her side. When my oldest brother came, he was the last to arrive, she just let go after my brother prayed for her, and died. This was how she lived her life. Head on. Got you in my prayers and your Mom too.


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
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Rachael,

I am so sorry to hear about your mother. I wish I had some good advice but I can offer an ear and support. It must be so much hard for you not being able to see her. I would assume it's easier for her to not see her children...I'm sure she knows how sad you are. I do hope you get to spend time with her and talk to make some memories together.


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
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Rachael, I am very sorry to read about your mom. Im sure you are devastated. As a mother, I think your mom loves you so much that she doesnt want to trouble you by seeing her sick. She probably wants you to remember her as the person she used to be before she was sick. It must be a terrible time for everyone in your family. I can just imagine what is going thru your mother's head right now. She must be suffering so much. Hopefully she moves past this phase quickly and allows you to be close with her again soon. Prayers to everyone involved.


Christine
SCC 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 smile
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Posts: 1,940
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When Rob was told he was going to die his wishes were to get as far away from his friends and family as he could. He wanted to be alone with me. Reason being he didn't want to see the anguish his dying was causing the people he loved. He accepted his fate and faced it full on but didn't want or need the pressure of coping with other peoples emotions. Of course he didn't get his wish as he deteriorated so quickly buy once in the hospice on good medication he seemed happy to have people visit and his attitude changed . Sometimes I wish my memories were not overshadowed by his last days its not easy to walk the path to deaths door with someone and be left behind as they pass through so perhaps for now give her little space to decide how she wants things to play out.
As for time scales ask a hospice nurse to go through the recognised seven stages of dying with you,it may help you understand better .


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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