Hello. My name is Stephany. I use to come her a lot when my mother was first diagnosed over 2 years ago. Now, I dont know where else to go. The people in here have been so kind and helpful, that you, my friends were the first people I thought to turn to. My mother was diagnosed with a SCC tumor in her gum that spread to her jaw bone. She had 3 surgeries and six weeks of daily radiation. After radiation, her health deteriorated and seh went from a size 18 or so to a size 4. She is unable to eat. She puts everything in a blender and is unable to even speak. She has fluid (infection) draining from her chin continuously. When the infection spread to her lip, she was referred to an infectious disease specialist who then referred her back to her ENT, who said that her tumor was likely back..And that the only way to diagnose it is to do a biopsy which would require a tracheatomy and would break her jaw bone. But the doctor also told her that even if the cancer was back, that there was nothing else that could be done. My mom is 65 years old and I refuse to accept that...isnt there something or some treatment out there..I would hate to watch her get worse than she is now...Has anyone ever heard of anyone with my moms cancer with a recurrence winning the fight against cancer? If so, that would give me hope....I welcome your emails or comments in here...I am willing to suggest anything to my mom at this point..But she is also very depressed..She has so much pain, she is on liquid morphine all day and pain meds..I almost think that the radiation did nothing for her, except make her worse.....I just dont know what to do at this point....God Bless you all....
Stephany
Dear Stephanie,
It breaks my heart to see you back here with this kind of news, especially after such a long and hard fight.
Certainly I would ask her doctors for a referal for a second opinion, such as Loma Linda or MD Anderson just to set you free that every possibility has been exhausted.
It may be the time to arrange for hospice care. They are exceptional at managing pain and making the patient as comfortable as possible, usually in their own home.
I will keep you and your mom in daily prayers.
Stephany, my prayers are with your Mom and you. God Bless, Love, Carol
Stephany, my prayers are with your Mom and you. God Bless, Love, Carol
Stefany,
I am far from an expert, but I recently got a second opinion from MD Anderson in Houston, Texas, and am currently under their care. I have been nothing but impressed. I would with utmost haste, schedule an appointment for your mother. The Head and Neck Center number is 713-792-6520. They have capabilities some other places do not have. Dr. Weber is the Center head, ask for him. He's great.
Best regards,
John
Thank you so much for your replies. I am going to call that number. JOhn, Has Dr. Weber helped you? I hope. I will definitely give a call today. THank you all for your help and prayers.
Gary, Thank you so much for your kind words. I am sorry also that my mother has struggled with this for so long to get this news. I was just hoping that someone in here could shed some light, which has already happened. Thank you.
Thank you Carol for your prayers.
Love
Stephanie
Yes, Stephany, he has helped. Great group, I think that they will be of great assistance.
John
Stephany,
My diagnosis was essentially the same as your mother's. I had surgery 25 months ago to remove the tumor, about 3" of my jaw, and affected lymph nodes (radical nexk dissection). I had 7 weeks of radiation, no chemo.
During treatment, I lost 62 lbs. Following radiation, I had wounds that wouldn't heal and other problems caused by the radiation.
Fortunately, I was able to eat, but I wasn't able to heal until I had hyperbaric oxygen (HBO) treatments this fall. I am much better now.
My docs in California didn't believe in HBO. Fortunately, my new docs in Washington do. I don't know if they are right for your mom, but they sure worked for me.
I think it's great that you will ask for a second opinion. Keep fighting as long as your mom wants to fight! And take care of yourself, too. She needs your strength.
Ken
JOhn, Thank you..I passed on the information
Ken, How are you doing? IS the HBO really helping you, I hope. Sorry to hear about your weight loss and fight as well. But hang in there. I know another lady that had thesame problems and recovered. There is hope. But for my mom, they have told her that her tumor is likely back.
DOes anyone in here know of any homeopathic or any other treatments that may be of help? I passed on the MD Andersson information to my family and they told me MD Anderson could probably not do anything more than what her UCLA doctors are doing here in Los Angeles, and that they would want to do a biopsy first anyway.
Does anyone know of any homeopathic treatments or anything we can do for my mom?
Thanks so much and GOd Bless You All. Hang in there John and Ken. You all are in my prayers
Stephanie
Stephanie,
Yes, the HBO treatments have helped. Dramatic weight losss is in the past, as I have gained back 20 of my 62 missing pounds. Now, I am dieting. My choice, not the beast's.
I appreciate your good wishes and kind words.
Ken
Ken,
WOw. That is fantastic..So happy to hear that...But my mom has this awful infection with oozing out of her chin continuously and is just not improving at all..And now with the cancer possibly back, I dont know if that would help. What do you think? I know you are not a doctor..but I value your opinion since you have been through this way more than her docs regarding this... Thanks..oh..and I appreciate your kind wishes and words....GOd Bless you!
Stephany
Ken,
WHat exactly is the HBO treatment? I am sorry, but I am suggesting to my family and I hate to say, I dont know much about it. :-(
Thanks
Stephany
There are many bits of information about hyperbaric oxygen treatment in the main body of the web site. You can use the search engine on the site and just type those key words in, and you will get a list of all the pages that have it on them. I just did that and here is the link that the search engine gave me back.... There are over 600 pages of information on the main body of the OCF web site. When you have a question, sometimes the immediate answer is no further away than the search button....
http://search.atomz.com/search/?sp-...&imageField.x=25&imageField.y=16 Also remember that the message board has its own separate search engine. That will look through all the previous posts for you for your search terms. We have had many very knowledgable posters here over the last 4 years that have left us valuable insights form their personal experiences. Besides the factual information that you get from the main site, the search of the messages will also give you the personal viewpoints that fill in the blanks about what it is like to undergo some particular proceedure
Stephany,
I had an open wound on my jawline for over a year. My skin was so damaged by the radiation that it just gave up. After several courses of antibiotics, the plastic surgeon on my team decided to patch the hole and replace some of the thin skin with a forearm flap. As is usual, he left a drain to let excess fluids escape after the surgery. The drain hole wouldn't heal, so I hadn't gained any ground.
After HBO treatments, I had a very minor 1-hour surgery to clean out the wound and close it up. It healed. HBO worked for me. I don't know if it would help your mom.
You asked about the treatment, and Brian pointed you to the many good articles on the OCF site. Let me just add that I traveled to the HBO center every day for 40 days. After changing into scrubs, I sat in a steel tank for 2 hours with up to 3 other patients and an HBO technician. I played cards, read books, and chatted with my companions.
Once in the tank, I put on a light weight "helmet." The technicians increased the pressure I the tank to about 2.5 times normal atmospheric pressure. Then, they pumped pure oxygen into the helmet.
There were only a couple of side effects. I got nearsignted gradually and it has taken a couple months to get back to normal. And, I felt a little tired after the treatments.
There you have it. I hope this helps.
Ken
Hi Stephanie,
I also had HBO treatment in April of last year. I had 30 "dives" and it was so I could have a bad tooth extracted as safely as possible. It worked as I had no issues with the extraction.
My treatment was different then Kens, I was in a singular chamber for one person only. It's a round, long, pure glass capsule that you lie in. Nothing is allowed in there with you, no jewelry, nothing at all but your eyeglasses. There are televisions mounted on the walls outside the chambers and the sound is piped into the chamber. All in all, it was a positive experience for me.
Minnie
Minnie
I am so glad to hear that it helped you. Unfortunately my mom cant do HBO treatments because her tumor is likely back.
But thank you for the information...and Ihope you are doing well
God Bless
Stephanie
Hi Stephanie,
I'm so sorry that her tumor is back. My biggest worry if I have a reoccurance is not how I will feel but how my older girl's will feel. I think they will spend all their time looking for a miracle for me and then feel like they couldn't "save" me. I am guessing that you are spending every spare moment you have trying to find a miracle for your mother, you are just not willing to give up, which is understandable. If I could offer you advice it would be to first, get her some pain management, she doesn't need to be in pain. Second, keep looking for answers and hope but look in the correct places, which would be at the large cancer centers with the top doctors. Nowhere on the internet are you going to find a cure for your mom. You will find people that will take your money and give you false hope but whatever course your mothers cancer is going to take is going to happen.
As a mother, it would break my heart to see my daughters desperately trying to save me. I hope that if that time comes, that they will just spend their time with me, making me smile and laugh as they have since they entered my life.
If there is anything I can do for you and your family please just ask.
Minnie
Minnie,
I am so touched by your message to me. Wow~ you sound like such am amazing mother and person. You are so right. I am spending a lot of time because I feel that is what I need to do. I dont want to give up. But, the good news is that my mom is going to Pain Management Center on Monday. So that is good. I try to spend time with her but she is always tired and does not feel well and does not want to do much. But my twin sister and I keep on trying. We do visit her and spend time with her. The hardest thing is watching my mother suffer. I hate it. I do want to do all I can. But you are right about those centers, etc. taking your money. We arent going to do that.
REgarding you, my mom had a weired recurrence. I hope and pray you never have a recurrance. So many people in here have NOT had recurrances. I am sure you will be fine. My mom had the same surgery as you. The jaw removed and replaced with her leg bone. She had a couple other surgeries before that and then she did the radiation which ended about 10 months ago or so. How are you doing and feeling? I know how hard it must be on you and your family and i will keep you all in my prayers. Are you feeling better and able to eat? i hope so. Minnie, I cant thank you enough for your messages. You really nailed exactly how I am feeling and how desparately i am trying to help. she has the top docs here in LA and we are meeting wtih them at the end of the month and can ask questions then. Please dont worry about you getting a recurrance. You probably wont. My mom had a tough road ahead of her.
God Bless you Minnie
Stephany
Hello Stephany,
Sorry to hear of your Mom's reoccurance. As Gary mentioned you may want to look into hospice care now so it's all lined up and ready when needed.
There is no reason your mom should be in pain. This is a basic right of the patient to have her pain managed. Please take comfort in knowing many members of this forum are pulling for your Mom.
She is lucky to have you as her caregiver. Your love for her is very apparant in your posting's. Hoping for that miricle for her.
Danny Boy
Daniel
Thank you so much. The word "hospice" Scares me at this point. I think it is a little early for that. Thank you so much for your kind words. My dad and twin also love her very much but we are all so annoyed with this disease and the fact that my mom has fought for over two years "for nothing". But she still functions somewhat at this point. But, she is going to the pain management center tomorrow. That I am happy about. Thanks somuch Daniel Hope you are doing ok. THanks for your prayers and I will put you and your family in my prayers. Thank you so much
Stephany
Stephany don't let the 'word HOSPICE' scare you, this is one to one care over what can be years, but with people who have walked this rocky road before you, people who know how to turn days into weeks, weeks into months, and months into years, they are on YOUR SIDE. they will be BY YOUR SIDE. Don't think you have to stare at a blank wall before you get hospice help, it's special and geared to everyone in the families who need this understanding,it's not all tears, it's about quaility not quanity of life and if I'm in that postion I would not hesitate to use their experence, let someone help you carry this load. may gods peace go with you...
Sunshine... love and hugs
Helen
Helen,
Thank you soooo very much for your kind words. Lots of love and hugs to you. We are exploring pain management right now and hope my mom gets some pain relief....Thank you for your advice about hospice...I am sure we will look into that as well when needed. THank you Helen and God Bless you so much. One thing I have learned in this experience is how kind people are, and my friends in here have shown me how good and kind and affectionate people are. Thank you for that!
God Bless
Stephany
Hello Everyone,
I just came back from my mom's doctor visit and he told us that my mom has less than a year to live. I am so devastated and just dont know how to deal with this. She cant eat or speak. She writes notes. THis is awful. He told us that this cancer does not spread and that she will pass on from something secondary, such as pneumonia. I just dont want to give up. He told us he cant be sure her cancer is back, but it looks that way because she has not gotten better and also because of the CT scan. Does anyone have any advice as to what I can do for my mom. She is starting pain management for her pain and nutrition in a couple of days. I just wish I could do more. I feel so awful. I am not a quitter and was wondering what I can do.
Thanks so much
Stephany
Hello Stephany,
Has your Mother had any kind of chemo treatment?
I had surgery and radiation the first go around.
I hah a reocurance in June of 05 and started chemo at that point. (Taxol & Carboplatin) The chemo is working for me. Hoping they can find some form of treatment that will help. As Gary mentiomed a second opinion wouldn't hurt. Hoping for the best.
Danny Boy
How can the doctor say this cancer does not spread? Please get a second opinion.
Thank you Daniel and Karen,
My mom is 65 and basically had just a surgery the first time and then surgery and radiation the second time. She never had chemo. Regarding the spreading, Imeant it does not mestastasize. It does not spread to organs. That is what the doc told us. That the cancer will just beat her down and she will die of something secondary. This is so hard to even type. I dont know if my mom would be up to a second opinion. She loves her doc and supposedly, he is suppose to be a good doctor here in LA. It is a good idea though. I will suggest it to my dad and my mom. Thanks so much
Stephany
Stephany,
Either this doctor did not graduate or someone did not hear correctly.
This cancer does in fact spread, it does in fact spread to organs, and I really think you need to get your mother to another cancer center NOW. Do not wait, call today!
PS, in a different post you asked me if I thought her draining wound was thrush, the answer is no. It sounds to me to be a fistula. Fistulas happen when bad stuff wants to get out of the body. Cancer can cause a fistula as can infections or other fluids that need a way out.
I don't like that her doctor isn't explaining things well. It may be that he is right; that her cancer is not curable, but she should be able to have chemo to slow it down. GET THAT SECOND OPINION.
I am sorry that this is happening to you and your family.
After just going through this with my mom, and losing the fight. I just do not understand how doctors can say there is no more they can do, when in fact they do not even know if the cancer has returned. Something can be done and something should be done! Please stephany i know how hard this is. I was my mother main caregiver and she fought like hell to beat this, she too had a doctor who she had for over 10 years. Were we at a major cancer center i believe i would still have my mom. Try to have her get a second oponion, You do not want to have to live with the what ifs. Sorry i'm ramblim.
Karen and Mark,
Thank you so much for your messages. After reading them, I called my dad and sister and everyone is in agreement that we should get a second opinion. Thanks so much. Regarding the not spreading issue, the doctor is highly respected in LA and he did say that. He stated it stays localized and does not spread to organs. That is what he said. Karen, what happened with your mom? I agree that we should do everything we can and I appreciate your advice. It means so much to me. Thanks again
Love
Stephany
Ken,
I cant believe all you went through. Thank you for the advice. The doctor told us yesterday that to do HBO treatments would be like throwing gasoline on a fire. He suspects her cancer is back but cant confirm without a biopsy, and she cant do that. Ken, I wish she could do the treatments but he strongly suspects her cancer is back. We are not giving up and getting a second opinion. Glad to hear you are doing better.
God Bless you
Stephany
Stephany, I am glad that you are looking into a second opinion.
I can only imagine what that doctor meant by "won't spread". Possibly, that she would pass away before such spread to another organ would become a problem? (which is a possibility) There are several people here that are going through treatments for metastic SCC cancer. Some others did not survive SCC that had spread to lungs, liver or brain. It also can spread to bone and other tissues.
It is unfortunate but this doctor might be right that your mother may not survive longer than a year. On the other hand I believe for peace of mind you all need to have another professional view from a Comprehensive Cancer Center. If she is already at a CCC then look for a different one in your area just to be sure that the second opinion is not biased by the reputation of the first doctor.
Take care
I sent you a private message
Thank you Daniel and Karen,
My mom is 65 and basically had just a surgery the first time and then surgery and radiation the second time. She never had chemo. Regarding the spreading, Imeant it does not mestastasize. It does not spread to organs. That is what the doc told us. That the cancer will just beat her down and she will die of something secondary. This is so hard to even type. I dont know if my mom would be up to a second opinion. She loves her doc and supposedly, he is suppose to be a good doctor here in LA. It is a good idea though. I will suggest it to my dad and my mom. Thanks so much
Stephany
Stephany,
Either this doctor did not graduate or someone did not hear correctly.
This cancer does in fact spread, it does in fact spread to organs, and I really think you need to get your mother to another cancer center NOW. Do not wait, call today!
PS, in a different post you asked me if I thought her draining wound was thrush, the answer is no. It sounds to me to be a fistula. Fistulas happen when bad stuff wants to get out of the body. Cancer can cause a fistula as can infections or other fluids that need a way out.
I don't like that her doctor isn't explaining things well. It may be that he is right; that her cancer is not curable, but she should be able to have chemo to slow it down. GET THAT SECOND OPINION.
I am sorry that this is happening to you and your family.
After just going through this with my mom, and losing the fight. I just do not understand how doctors can say there is no more they can do, when in fact they do not even know if the cancer has returned. Something can be done and something should be done! Please stephany i know how hard this is. I was my mother main caregiver and she fought like hell to beat this, she too had a doctor who she had for over 10 years. Were we at a major cancer center i believe i would still have my mom. Try to have her get a second oponion, You do not want to have to live with the what ifs. Sorry i'm ramblim.
Karen and Mark,
Thank you so much for your messages. After reading them, I called my dad and sister and everyone is in agreement that we should get a second opinion. Thanks so much. Regarding the not spreading issue, the doctor is highly respected in LA and he did say that. He stated it stays localized and does not spread to organs. That is what he said. Karen, what happened with your mom? I agree that we should do everything we can and I appreciate your advice. It means so much to me. Thanks again
Love
Stephany
Ken,
I cant believe all you went through. Thank you for the advice. The doctor told us yesterday that to do HBO treatments would be like throwing gasoline on a fire. He suspects her cancer is back but cant confirm without a biopsy, and she cant do that. Ken, I wish she could do the treatments but he strongly suspects her cancer is back. We are not giving up and getting a second opinion. Glad to hear you are doing better.
God Bless you
Stephany
Stephany, I am glad that you are looking into a second opinion.
I can only imagine what that doctor meant by "won't spread". Possibly, that she would pass away before such spread to another organ would become a problem? (which is a possibility) There are several people here that are going through treatments for metastic SCC cancer. Some others did not survive SCC that had spread to lungs, liver or brain. It also can spread to bone and other tissues.
It is unfortunate but this doctor might be right that your mother may not survive longer than a year. On the other hand I believe for peace of mind you all need to have another professional view from a Comprehensive Cancer Center. If she is already at a CCC then look for a different one in your area just to be sure that the second opinion is not biased by the reputation of the first doctor.
Take care
I sent you a private message