DX SCC OF LOWER GUMS 6/09, Wisdom teeth and tumors removed 7/09, refuses rx and chemo, started methotrexact therapy 08/01/09.

My 35 year old boyfriend informed me 7/31 that he has SCC. At that time the tumors had already been removed (I thought it was wisdom teeth only). He has not informed any other family or friends of his diagnosis. He thinks he can fight this alone (with my support) until he has a remission report without anyone else ever realizing he is sick ( after a week of mtx I know better). Methotrexate dose is at 25 mg daily right now- is to increase to 100 mg daily by the end of 10 weeks. He has alot of nausea and stomach pain,, but continues to work. What can I expect and what are the odds of this treatment working without RX?

Welcome to OCF, and sorry to have to be here. I dont know of anyone who was treated with only methotrexact but am sure someone who has will respond. Most of us here had both chemo and Rad as part of our treatment. What did the Doctors recommend for him? Is he being treated at a CCC and do you know what caused his SCC? God speed and good luck. Semper-Fi Bob

TL,

Without knowing more and at least his Staging usually surgery alone is never enough. SCC is a very aggressive cancer and it claims appx 50% of it's victims and that's usually after the standard very aggressive Tx including surgery, radiation and chemo. Again sometimes only surgery is performed in Stage I's and they will sometimes hold back on the radiation if it recurres but it sounds like they have already recommended the radiation and chemo so IF THEY HAVE he really needs to go thru with it.

TL

I don't usually have to do this, since usually OCF forums are scrubbed clean of scumbags pushing fake cures and bogus Mexican clinics, but I see we have been reinfected again so PLEASE do not fall for any miracle cures. Just because someone violates the rules and links directly to El Loco clinic does not mean that OCF has validated it or supports it. I was beseiged with well meaning offers of herbs, vitamins, and mexican clinic touts at first and it is tempting to believe that they can help - BUT THEY CAN'T. You are very vulnerable right now and I would hate to see you taken advantage of by a rogue OCF post.
As a practical matter, consider going with your boyfriend to his next doctor's appointment if he lets you as you will be helping him a lot by taking notes and remembering to ask the questions. Plus one of the most valuable things a female caregiver does is help spell out complications when the tough male patient replies; Everything's fine to the doctor when you know very well there is nausea, etc,
Good luck
charm

TL
Welcome to OCF. Im so sorry you are here, but at the same time you will need this site to help you both thru this. Your boyfriend sure has placed a huge burden on you with his secrecy. You will need help caring for him even just a break to catch your breath. Treatments are difficult, he may lose his voice like most of us towards the end of treatment. People will notice he is ill, this isnt like a cold or flu, its a long rough road that is easily recognized by people who know him.

I am one of the very few who did not have a real caregiver. I also ended up in the hospital more times than I want to remember due to no one helping me with meds, hydration, counting calories, etc. I lost 65 pounds and my ability to drive.

I hope he overcomes his pride and lets people know so you both will have some support and assistance. Best of luck with everything.

TL...I was moved by your post for YOUR sake. I know that, as a cancer patient, I made a conscious decision that I could NOT carry this alone, and I told everyone I knew about my situation and asked them to pray for me. They did, and they still do. It continues to warm my heart and lift my spirits to hear someone ask me, 3 1/2 years later, how I'm doing, and really mean it.
I know that I am overstepping to offer an opinion, since of course I don't know either you or your boyfriend, but that's all any of us can do--offer our opinions to be taken or not.
I feel that he is using poor judgment for himself, AND that he is not being fair to you. He is asking you to participate in something that is not in the best interest of either of you. If I were you, I would tell him that YOU need the support of family and friends, and that to get it, he'll have to let you share the information with them. He doesn't need to shout it from the rooftops, but he's not being either reasonable or fair to you.

Good Luck! XO

I like Christine was my own caregiver because I was abondoned by my one close person in my town. I did everything myself, with a lot of imjuries from such a weak body. Tell you boyfriend that I was as tough as he will ever be but to have that caregiver very close by. He will need you or someone else if you have to go somewhere. I was never so helpless at anytime in my life, Yes I survived, buw maybe I was just lucky after the falls I took and the injuries from stumbling into the walls or the dropping of things to the floor. Even th fighting sleep when driving on the interstate. He needs help and it won't get any better for a long time. LOL I even had to crawl out of the bathtib but from then on, no more sitting in a tub of hot water.

Colleen, I noticed that you did not have rads or chemo. What form of treatment did you have? I do so wish that he would open up to our support network of family and friends, but so far that is not an option. He has lost 37lbs thus far, so people are beginning to notice. The methotrexate doubles to 50mg daily on Tuesday- so we'll see what happens from there. Thanks for your support. This forum is soooo important to me right now. Teresa

TL - Take care of yourself so you can take care of him....grab whatever time you can to relax, take a walk, read a book, pray,whatever makes you feel better. You will need it. You will also need whatever support you can get. I hope he opens up to family and friends soon. ((((TL)))) This forum is always here when you need someone. Good luck.

Cheryl

TL, what is the treatment that he is receiving? I have never heard that. I'm assuming it is not a type of chemo since you said he doesn't want chemo or radiation. I don't think anyone wants it, but we want to live and so we give it all we got. Have you talked to him about his choice? I do agree with Colleen. First of all, if he lost so much weight people are going to know something is wrong. He needs support from you and you need support too. I hope we can help you here at least, but you need family too.

Suzanne methotrexate is a form of chemo given in tablet form by mouth.Back in the old days it was used in conjuction with another oral tablet whos name escapes me at the moment.

TL
The greatest fear is the "Fear of the Unknown." When I was first diagnosed, I just wanted to deny that anything was wrong.
I wanted to believe it would all go away. Forunately, I didn't let myself do it. Yes, cancer is scary, but it not as scary when you have all the information. Radiation and Chemo are manageable.

I would suggest that your boyfriends doctor prescibe an anxiety and a dperession medication.

Do anything you need to do to get your boyfriend on this site, both the Foundation information and the Support Group. He needs support from people who have been there and can answer his questions.
Please keep in touch so we may help you.

Sandyst

Suzanne, Methotrexate is an oral form of chemo. I should have stated that he was rejecting conventional chemo and radiation. I am having a very hard time with the fact that he will not allow the ccc he is working with the educate him. If they start to try to talk to him about the possibility of it spreading, where it could spread and what that would mean-- he walks out. He does not want to know his stage, the statistics or anything. I do not think he realizes that the precious time he is wasting could allow this to spread to his jaw, tongue or worse and that the results could greatly affect his quality of life- even if he wins the battle. He has developed infection around three of his fingernails this week- which he plans to lance himself. I will say STUPID, IGNORANT, SELFISH so that all of you do not have to. I am so mad today that I could scream. Without this forum to vent a little of my emotions, I do not know how I would make it. I love this man dearly- but lately it is like he hates me for being the only one who knows. It is like the fact that I know makes me guilty for the disease. He did not want to confide in me---I just kept pushing for information because his actions toward me change dramatically for no apparent reason. He turned cold and was withholding all affection (still does) without any reason I could see. He finally gave me the reason - his diagnosis- and said he did not want me or anyone else involved. He intends to do this "HIS WAY". Am I wrong to feel frustrated? I feel like if I continue to allow him to treat me this way because he is ill, it will continue after his recovery. I am so confused. Any advice is appreciated. Teresa

I think he should either appologize or you play his childish game and just walk out. I would bet the lite bulb in his head would start to flash then. If he had some treatments and it was further into them, he might have an excuse fro acting like that, but it's not that, it's all him. There are a lot of guys that would appreciate a woman like you.

Teresa
everything you are going through has been gone through here before by others.I know thats no consolation to you right now,but i just want you to know that self destrucion is not that unusual an emotion in cancer patients and is very hard to deal with.My husband wanted to kill himself from the day he was told he had it and it took every bit of feminine chicanery i could muster to get him to have treatment,but boy did he make me suffer throughout the next six months.He hated me asking the doctors questions and he hated me telling him what they said,he hated the fact that as a nurse i knew what i was talking about and sometimes he just hated me full stop.
Nothing you do will ever be harder ,and the hardest part may be telling him straight what a total arse he is being,but if he is as bad as you say it sounds like it will have to be done.Dont let your sympathy for his condition,cloud your reaction as a wife and a human being.If you wouldn't let him away with this behaviour before he was sick,then don't let him do it now.

The best thing you have done is find your way here and there are many like me who have been on the receiving end of bloody minded husbands so i know you will get all the help you need.

take care
liz

For the first time in 2 weeks- I was able to feel close to Brian. He had a bad day with the meds yesterday, but for whatever reason- was a little more accepting to me today. I was actually able to lay here with my head on his shoulder and have a conversation ( I know that sounds so small- but it is huge compared). A few smiles were shared and even a kiss goodbye before he left for home. For the first time in days- there was at least a signal that he still was alive emotionally. Thank God for small blessings!! How were these small moments taken for granted before the big word came into all of out lives? I look back to just a few short weeks ago when all seemed well and we could spend whole weekends in absolute bliss. The hunting trips we had planned for mid-October seem unlikely now. The cruise has been cancelled. The things that seemed so big seem like a long ago memory now and are overshadowed by just a simple half hour of sweet conversation and a kiss goodbye. Wow- this monster really changes life in a hurry.

Have the doctors told Brian that the Methotrexate will work to rid the cancer or will it just slow the progression? I don't know of anyone on the forum that was treated with that. Two years ago it was explained to my husband and I that chemo alone would not be a winning proposition. Although, my husband did not have surgery. Did Brian's surgery have clear margins?

I wish I had the answers to the questions that you have. I do not know about the margins- only that the trace in the blood was so low that is was not numbered. His doctors highly recommended radiation and intravenous chemo- Brian alone is making this decision. They told him there was a 30% chance that Methotrexate alone would work. He finally broke down today and said that he "May" agree to a single radiation treatment that the doctors said would "flash" the methotrexate and jump start his current treatment plan. He finally did share his illness with one other friend today- our vetinarian who is also a personal friend and cancer survivor- so I have someone who I can turn to a little. Thanks for your questions and effort in helping me through this. Teresa

Teresa,

As far as I know, there isn't a blood tests to detect oral cancer. So, I am not sure what trace you are referring to.

Do you go to the doctors with Brian? I'd just ask the doctor, if I were you. Either they had clear margins and they were telling Brian to get radiation and chemo because this cancer is so aggressive that they were working on the side of caution. Or, the margins were not clear and radiation and chemo were recommended as a measure to help save his life.

I realize Brian doesn't want to know the facts, but do YOU know the facts about how aggressive and deadly this cancer is?

Margaret, No, he does not allow me to go to the dr with him- or for that matter - to even know which dr he is seeing. What he did tell me was that they did not take lymph nodes- they check them each time he goes, but have not performed biopsies on them. They did take blood and found very minimal traces. He was told it could spread via nodes, blood or spinal fluid ( which they also have not drawn). He also told me it was in the tissue only and had not spread to the bone. I do realize how deadly this disease is- but only from the information that I am finding on the internet. I do not think I fully realize how agressive it is. He thinks he will take 10 weeks of oral chemo (without anyone ever realizing he is taking it or without ever missing work)- get a few check-ups and that will be the end of it. I do realize that is unrealistic. Thanks for any input that you can offer. Teresa

Hi, Teresa,

Brian is in deep denial and doesn't yet understand he can lose the window of opportunity to act.

I also had SCC of my lower gum - an early stage. I was scared, and I didn't want to deal with it. But there it was, looming over my life like the elephant in the room. It forced me to face my fear: I was afraid I was going to die. I had to learn I could live with cancer. And I wanted to live. I wanted to live. I don't know what stage Brian is at emotionally, but I suspect he has been having some of these same feelings.

Calling Brian childish or scaring him into thinking about treatment will shut him down, but you know that. Talking with his friend seems to be a start because he's found someone with whom he can share his fear. Perhaps his friend can get Brian to start thinking rationally and listen to his doctors.

In the meantime, I'm glad you've found this site. The people here are wonderful, and you will find support you so badly need.

Take care,
Marlene

Is he typically this stubborn and unrealistic? Or, outside of the world of cancer, is he more rational? I have seen too many people do all that is possible and not win this battle. I can't imagine someone doing far less than is possible.

How long have the two of you been together?

M-

Have you tried printing these posts out and leaving them where he will find them?

He needs to fully understand that without his doctor's recommended Tx ( 6 to 7 weeks of concurrent radiation and chemo just like 95% of us received) his chance of surviving will be SLIM TO NONE and his death will not be a pleasant one unless he's one of the lucky ones to go quickly.

Margaret, He is always this irrational and stubborn. We have been together about 6 months, but have know each other over 10 years. Thanks for your support. Teresa

Another decent day---two in a row. Methrotrexate doubles tomorrow, though. I hope that the Dr can get through to him tomorrow. Good news at this stage for me would be that he accepts recommended treatment. Thanks again to all of you who are showing me so much support. Teresa

The Drs told Brian that his counts were going up, not down. This information was based on lab work from last week. I am not sure exactly what that means, but I do realize it is not good news. They were able to convince him to take a single dose of RX today---thank goodness. He said it was administered to the two spots on his lower gums where the tumors were removed. 7 minutes on each side. Is this about the norm for a first treatment? He said he was kinda burning inside, but otherwise felt no discomfort. Are there side effects from this single treatment that I need to watch for as the evening goes on? We are 2 weeks into the metho doses and his dosage double to 50 mg per day starting tonight. Teresa

Hi Theresa,

I don't think the conversation while snuggling and smiles and kisses are small. I think they are wonderful and you should cherish them. Yes, this disease will change your life and quickly.

I know somebody mentioned this, but has he thought about taking something for the anxiety/depression? The first time I heard my name and cancer in the same sentence I was in shock. I had myself dying before I could get married or have kids. I finally got over that but it wasn't easy. Everyone deals with this in their own way and time. Try to be patient and supportive, just like you have been. There is only so much you can do. In the meantime, let us help you and provide you with support. How old is your boyfriend? Does he live alone?

I am so confused on his treatment protocol. For the people here who have received radiation treatments (is that what you are referring to when you say RX?)they had significant radiation planning done and a face mask made in advance of treatment that forced the patient to stay in one place to allow for the radiation beam to be administered correctly. I don't know of anyone who just got a blast of radiation w/ out all of the planning and preparation.

Generally, radiation treatments are given daily for 7 weeks. Side effects start later on.

I still am concerned that your boyfriend may win the stubborn battle but not the war on cancer.

Would he listen to his family? What would happen if you got more people involved in talking to him?

What does he say when you ask him if he had clean margins during surgery?

The counts are likely a result of a blood test and is showing how his body is reacting to the chemo. He should be careful being around people who are sick as he may be more susceptible to catching what is going around. And, he should listen closely to the doctors when they give instructions based on the results of his lab work.

They can't do counts to detect oral cancer.

I still don't know anyone who was treated with the metho. This cancer is very, VERY aggressive and deadly! I think he's playing with fire if he isn't listening to his doctors primary recommendations.

Did I read on another post that he is still chewing tobacco? Honestly, if that's that's the case, I believe he's doing everything possible to minimize his chances for a long, happy life!

Suzanne, Thanks for the encouragment. Brian is 35 and lives with his brother most of the time. He is here with me a couple of nights a week. It is a constant worry to me that his brother does not know about his condition or the meds that he is on.
I do soooo cherish the moments of having just a bit of happiness and seeing a little glimmer of how he use to be. Thanks for your continued support. I do not have much information to offer, but I hope that I can be a source of comfort to other patients and caregivers in the future the way you and so others have been to me. Continued thanks, Teresa

Your information confuses me about his radiation also. He has not mentioned a mask being made and did not give me much info about the treatment itself. I know he will not be going back for a week. I also feel as you do that his stubborness may cost all of us the joy of having him here. He would not listen to his family and due to the fact that his Dad is recovering from a stroke he is adament that they do not discover his condition. Yes, you did read that he is still dipping. Has cut back from 3 cans a day to 1 and is scheduled to go to a treatment program at the end of the 10 weeks of methotrexate if he has not quit on his own by then. Drs wanted him to get off of it first, but he could not do it on his own and had no explanation for being gone for 2 weeks. Thanks for continued support. Teresa

Teresa,

I feel badly that I can't help you. Does he just shut down when you try to get information from him or does he get angry? I'm trying to figure out why he won't let you understand more about what his doctors are telling him.

RX is generally used here to indicate prescription.
RT is the abbreviation for Radiation Treatment.

People treated for oral cancer don't generally get a one-day blast as proper treatment requires significant planning. To learn more about that process, you can review this page from the OCF:

http://www.oralcancerfoundation.org/facts/radiation.htm

Perhaps you could use the information gleaned from this article to ask more specific questions of Brian?

Here's a site about someone who got cancer from dipping:

http://www.outdoortexan.com/mycancer.htm (warning re: graphic photos)

This is from a couple whose husband did not win the battle...Rich's plea is about getting people to stop smoking. If he was here, I'm sure Rich would want Jeff to stop dipping.

http://richsplea.synthasite.com (again warning re: graphic photos at he bottom of the site)

Please take a moment to understand how terrible, serious and deadly this cancer is. I wish you luck, courage and strength for you to help Brian.

Margaret

Margaret..that is great information!!

Teresa, I see this 2 ways. You can either say "if you are not going to take care of yourself, then fine" or you can understand and be patient. Both are hard...especially for you. Man...I would be so frustrated!!! Like Margaret said, I have never heard of a quick zap of radiation. It seems like his tx is all over the place which leads to me beleive he is not telling you everything. I'm not sure what you can do with someone like that.

Hello everyone. I am back with a new term and explanation - or looking for one - of what Brian has meant when he says it is in his blood now. I think the correct term is vascular invasion. Until this past Dr visit- it had not been detected in the blood vessels and now it is. Can anyone give me an explanation in terms of what this means as far as his cancer spreading. I know it spreads through the blood- but how high is that probabilty and does oscc have a place is spreads to more often when it does spread? I would think they would have done a PET by now, but he says they have not. Oh, and he did wear a mask, but says he was never fitted for one. Also said the Dr just moved the light around until he got it to where he wanted it. No marks or anything. Thanks for everyones input.
_________________________
CG SCC of lower gum. DX 6/09, SURGERY 7/09, MTX Started 8/09. Single RT treatment 8/18/09

Margaret...excellent info you posted.

Teresa, the more details people give, when explaining things, the more that there are fibs put in there along with the facts. If everything was as stated, then why arent you able to tag along to his doctors visits? Sounds like some contridictory info. Im sure its done out of love to spare you the worry. In order to help him he must learn to first help himself. Im so sorry that you both are going thru such a difficult time. Ignoring things wont fix them and in the end it will only make things worse.

Im sorry, I dont know anything about how it spreads thru the blood. Sending you good thoughts that your situation will improve and he opens up more.

Hi Teresa,
Get ready for the most challenging months/years of your life. I was my husband's caregiver for 4 years and 3 occurences of OC. I don't know about vascular invasion, but my husband did have Peri-neural Invasion or PNI, which is one reason his cancer kept recurring. I just lost him in June, which still doesn't seem real to me. We were married almost 25 years, and there is nothing harder. I am not the only caregiver on this site that has lost their partner to this horrible disease, and I'm sure there will be more. I just hope you won't be one of them. I think Brian needs to be kicked in the arse (as Liz would say), and I would not hesitate to do it if I knew where he lived! My husband was a big strong farmer when this hit him, and he lost everything. His ability to work, communicate clearly, and even ride his Harley at the end. If you are interested you can click on my name at the left and select homepage. I kept a blog about our experiences and also photos. Please tell Brian that if he loves life, he HAS to have the regular chemo/radiation treatment for OC. This is not a cancer to mess around with, or to take your time deciding a plan of treatment on. He needs the big guns NOW, there may not be a later.
Please take care of yourself!!!
Lori

Theresa:
I agree with everyone who has posted. Something does not sound right. First, you just can't try on a mask. The point of the mask is to keep you head from moving while doing radiation. If they didn't fit him for one, then how did he wear one as it's formed to your head???

I also don't understand about the light. Radiation does not have a "light". Plus as someone else stated, radiation is a planned treatment. The doctor's pinpoint where the radiation should be directed and they also try to save healthy tissue.
So it can't really be a one shot deal.

So, I would keep on asking questions. Get more information so that you can figure out what-is-what.

Good Luck. Please don't hesitate to ask questions.

Sandyst

Teresa,

Go to the main page--oralcancerfoundation.org and find the search box and enter vascular invasion. I am not familiar with the term, but from what I read, it does not sound good.

If you want him to have a fighting chance, you need to get involved in his care and go to his doctor's appointments. I know you said he doesn't want you there, but this is a life or death situation about someone you obviously care deeply for. It's selfish on his part to keep you at arm's length.

Even the un-stubborn patients often go armed to the doctor's with a 2nd set of ears. This is a complicated cancer. We've seen the best and most diligent patients die on this forum...rarely is there someone who doesn't give this their all because this cancer is a killer!

I don't feel like he's giving you enough information, or accurate information. Caregiving is a touch job, and you can't do the job if you don't have the facts. Teresa, if you want to help him, you have to figure out how to be at his appointments. Do you know if he going to a Comprehensive Cancer Center?

Last night was not a good night. It is like he has given up and has decided if he can make all of us hate him it will be easier on us in the long run. So our wonderful weekend consisted of sitting on opposite ends of the couch- no conversation- no nothing. When I did try to talk to him he would yell and scream at me that I did not have a life or a future with him- that I needed to just go on with my life and get over it. He finally did break down and apologize- but man are his emotions all over the place. The bad part is that at least I have an idea about what is going on-- the rest of his family that are enduring his being a tail don't have a clue why. Thanks so much for your support. Teresa

I feel really sorry for you and I can only imagine what it must be like having to put up with this irrational behavior. Seldom do we see someone willing to give up without at least going thru the standard rad chemo. I can only think of one since I have been associated with this site and unfortunately he decided to seek Tx after it was to late. It was a little more complicated than that and we all grew to love him but there's was little hope when he finally did srart getting the proper Tx. I don't envy you or him if that's what his final decision is going to be.

I am not familiar with the term vascular invasion either but I would say that chemotherapy coupled with radiotherapy would give him a fighting chance. Somehow he has to be made aware that if the doctors are willing to treat him with chemo and rads there is a good chance for recovery. He cannot give up! We won't let him give up. I wish that I could talk to him for five minutes on the telephone.

Connie

Well, so much for "Sunday is our good day". Brian and I had to work doing a bank tile job today and he fell while on the job. Just fell over his own feet. He is so weak now and his breathing is so irregular. The Methotrexate is beginning to really thin his hair (which I hope will be a blessing in disguise so that he will have to reveal this monster to his family). We had a new challenge this week. His 17 yr old has been diagnosed with shingles and he wants to go see her and check on her, but...... It is an everyday battle of me saying he cannot be around her while she is sick because of him immune system. Another complication of this being secret. His mother also has the flu and he is staying away from her for now, but she will not let him avoid her for long. We get new biopsies on Tuesday and if they are not good, he has to seek treatment elsewhere. Please pray for good results---or that the best for the longterm outcome happens. Teresa

Teresa, I think you just learned that everydy is the same with no days off for good behavior. OC treats us the same every day , 24/7. I have no idea why he wants to keep OC a secret from his friends and family. I'm sure that once they see him, they will know.

Hello everyone, Brian had his biopsy last Wednesday. The cancer cells had originally been only in the top layer of tissue, but are now all the way through the tissue. The cancer cell count in the blood continues to decrease, though. He had three trips to the Dr last week. One for the biopsy and two for massive swelling. He wakes in the morning with swelling to his hands, ankles, and eyes. Is this from the HDMTX or the cancer itself? Of course, I still get no answers from him. Friday night he was wild eyed and on a "nothing you do or say is right" roll. Saturday he was back to being a sweetheart. The mood swings are massive these days with the bad moods being really bad. He has also been falling down alot. His memory and his balance are both WAY off. Dr. gave him the "short of a miracle" talk this week. Any ideas on where we stand in this ?

Hi Teresa,

When you say "short of a miracle" are they saying they don't think he's going to make it? If so, I think his mood is understandable. I'm sorry to ask this if it was gone over earlier...have you gone for a 2nd opinion? If not, I would now. Is he still working?

Hi Suzanne,
From what I understand they do not expect him to make it "with his current treatment" and he refuses anything more than the oral high dose Methotrexate.
I do understand his mood being what it is, but he goes through this thing of thinking it will be easier on all of us when the time comes if he has made us all so mad that "his being gone will be a relief". I, at least, have the insight of his being sick. His family and co-workers just know that something has changed alot. They do not know that he is sick - and his workers are afraid to say anything. He has lost 47 lbs (over 25% of his weight), gets dizzy and falls resulting in alot of scrapes and bruises,and memory and balance are shot. It is hard not to know something is wrong. He still works, but it takes a while for him to get up in the morning. Sleep is a double edge sword. Without it- he wears down---With it, he gets terribly stiff.
He will not accept any meds other than a water pill and the chemo pills. No pain pills, no sleeping pills, no anti-depressants. He also will not go for a second opinion.
Thank goodness there are still the good days when he loves me and treats me as if every moment counts. That is how I have come to live life --- as if every moment counts. Thanks for allowing me to vent. I did not mean to go on forever.
Teresa

Teresa,

I really hope you're taking care of yourself through this. For whatever reason, your boyfriend is choosing to die instead of fighting for his life and I can't imagine that this is easy for you to watch. Do you have anyone to talk to, other than this forum I mean? A therapist? A pastor? A social worker? Anything??

- Margaret

Margaret, This forum is my main outlet. I have confided in a co- Habitat for Humanity worker who has been to MDAnderson and is a cancer survivor of 6 years. Brian does not know that I have shared this information and would be livid if he did. He does not even like me getting on the forum. He is EXTREMELY private.
It is hard watching him slip away, but I have no choice but to be supportive. What scares me now is that he has so many signs of it spreading to the brain. The clumsiness, dizziness, loss of concentration, fever after chemo, memory loss, double vision, headaches, personality changes. He has every symptom except seizures (and may have those, as we do not live together).
His objective is to live until next July (when his life insurance will kick in). I am hoping that he is still with me and functional Christmas. I do not know if it is ok to mention religious beliefs here, but I am a Christian and believe in miracles. That said, I also realize that God's plan does not always include a rescue for his people (10 of the 12 disciples were executed). If at times I seem cold or too accepting of this, please know that loosing him is killing me, but between accepting God's will and Brians choices - the only choice is leaves me IS acceptance. I love this man deeply, but I cannot MAKE him live. Thanks so much for taking this time with me.
Teresa

Teresa,

You need to find him another doctor at a CCC and suggest that he go to see this person, if you wish to have another chance to save him. I completely understand that you have strong religious beliefs, however you should try to encourage him to see someone else. My father was on methotrexate and it is a very powerful drug but, may not be the neccessary treatment for his condition. Get on the net and research medical oncologists in your area and find him another Dr. Get him information with concrete results. Present him this information and lay it on the table for him. Tell him that you want him to be with you for any years to come and that he needs to do this if he wants to be with you, too.

That is all that you can do. Put yourself out there for him. I will keep you in my thoughts and prayers.

I still am at a complete loss when you talk about the cancer cells in his blood work. What are you talking about? Without the best Tx it will be a miracle for him to make it until July and at this point even that may be futile but again without knowing what really is going on we can only guess at best. I must say that nothing you say makes any sense with what I know about this cancer.

Theresa

Here is something relevant from today's Washington Post advice column. I cut and pasted it for you
[quote]On letting people help you when you need it:

I remember years ago when my dad was in the hospital and my parents lived about a six-hour drive from me. Mom said I didn't need to come, she just wanted me to know he was there. (I had gotten very angry with them several months before because they didn't tell me until after the fact that he had been hospitalized.) I drove down anyway and spent the weekend, gave my mom some relief and got her to go home to sleep in her own bed. Before I left to go back home, she told me, "I didn't think we needed you, but I sure am glad you came." I'm thankful I didn't pay attention to that "we don't need you" foolishness.

A word to those people who don't tell their family or loved ones when they are seriously ill or hospitalized because they don't want them to worry: That is not fair to your family! People who love you have the right to worry; it's their decision whether to worry or not, and you are being cruel to deny them that right.

Still Missing My Mom and Dad After Many Years [/quote]

Here is a direct link to this article if you want to print it out to give to your stubborn cancer patient while still keeping your OCF secret. Fairness to family requires telling them you're ill
good luck

David, I understand your point and appreciate any information you can offer other than that it does not make sense. I am giving you all of the info that I am getting and please keep in mind that I am here because I have the same frustration that you do. It does not help me to be reprimanded for not being able to make my information make sense. I am just looking for an outlet and, unfortunately, right now this is the only one that I have.
I keep hoping that something that I post will make all of the pieces fit. Sorry that it annoys you.

Charm, Thank you SO much for this positive post. I have printed this out and have a feeling that it will somehow land in his truck seat. I strongly feel that he is being unfair, but my telling them would cause him to withdraw from me and I cannot loose what little time I have left with him. Selfish, yes. But I also have to weigh in on the fact that he thinks this will send his dad over the edge with his stroke recovery and blood pressure already in bad shape. If I were to tell them and Brian lost his dad because he had another stoke, where does that leave my decision? I think it definately has to be his decision to talk. Thanks for this wonderful article though. Teresa

Teresa,

Do you have a relationship with Brian's family? Have you considered what will happen after he's gone and they realize you knew what was happening and didn't give them the chance to help and support their son and brother?

I don't think I could support someone in that decision as you are doing. Brian is making an impossible situation even more difficult, and quite frankly, I think the way he's treating you is downright cruel.

Teresa, I was away and just read this entire post. First I am so, so sorry you are going through this and quite frankly I don't know how you are dealing with all this. If you read my signature you can read all my husband has been through. When my husband was diagnosed he had never been sick a day in his life, never smoked, ate right, took vitamins every day and still got slammed with this. As a caregiver the past 8 months have been some of the most difficult and yet some of the most loved-filled months of my life. My husband is also a very private person and didn't want people knowing he was sick and couldn't even say the word "cancer". He would refer to it as his "condition" or "situation". Our doctors basically told us that chemo alone does nothing for this type of cancer. Chemo would help enhance the radiation and that is what we went for - total cure. My husband told me from day one that he would give it his best shot and go for the treatment all his doctors agreed on. Thank God we are now on the other side but we don't relax totally thinking that it couldn't come back. My husband already told me that if the cancer comes back he won't seek further treatments. That scares me to death knowing how many people on the boards who have had treatment and had recurrances.

In the beginning my husband would get very angry when I would discuss his "situation" with people but I wear my heart on my sleeve and could have never survived this without support from my family, friends and co-workers. When John was deep in the middle of treatments and could no longer talk, he would leave me the most loving notes telling me I was his rock and he could never get through this without me. To me - that's love. John told me during treatments that he wanted to stop because it was just to difficult but couldn't bear the thought of me being left alone without him or leaving his 83 year old mom alone. I think it is totally selfish of your boyfriend to not let his family know what is going on and I think they will be very angry if he dies from this and they find out that you knew.

I don't think your boyfriend is in denial I think he obviously has a strong self-destructive streak and doesn't care enough about his loved ones to share this. I really wish there was something I could say to make you feel better. The reality is that this WILL kill him. With the treatment (if you want to call it that) he is currently doing I would be surprised if he survived months or weeks. I to believe in prayer and miracles. But if prayers alone worked, I wouldn't have watched my mom die from pancreatic cancer after a 3 1/2 year battle and she was caught early. I will continue to pray for you to give you the strength to do what is right for you. Wanda

I have to say i am 100% behind David on this one.Absolutely nothing that he has told you is recognisable as treatment or symptoms of Oral Cancer.It just doesn't make any sense at all.Thats not your fault and must be equally frustrating for you as it is for us,as it is almost impossible to give help and advice.I am at a loss,and really have no idea how to offer anything that will be of help to you.

Teresa,

Have you gone to any appointment with him yet? Is it a possibilty that he is not telling you the truth?

Hi Teresa,
I am sorry you are going through this. I dont know much about MTX aside from what I have read. It appears that some of the symptoms that Brian is experiencing may by caused by the drug, but should be reported to your physician. http://www.drugs.com/sfx/methotrexate-side-effects.html
I dont think he should be working if he is experiencing the things he is. Also, I do know that 2 other posters here, Tom Rousell and suemarie's husband Neil had MTX, both palliative treatment. I dont think it is tolerated well. And I'm sorry if I missed something in your posts, but if he is this miserable with MTX, then why is he afraid of radiation?? I was 34 at diagnosis and went through radiation and chemo and tolerated it quite well, and I'm here to talk about it 7 years later. If he doesnt have radiation, he wont be so lucky. I agree with Suzanne that he may not be telling you the whole truth. Good luck to you and I hope you can convince him to seek further treatment.

I do have a positive relationship with his family. However, his brother does know the situation and I feel like it is their place to go to his parents with this. Thanks for your input, though. It is greatly appreciated.

I'm sorry if I offend you but quite frankly this site is all about helping people that want to be helped and unfortunately you are the only one that wants our help and we can't help you other than some emotional support while you watch him die. It's frustrating to us as well when we know he probably could have been saved and we just don't understand how someone can act like him after this site has helped thousands that wanted to be helped.

Sorry and good luck.

If I found that someone I loved had such a serious illness and had not trusted me enough to share the information with me so that I could either worry, pray, or help, I would be terribly insulted. I loved Charm's article, as I have had this philosophy for a long time: that to not allow others to help us when we need it is to reject a gift that they are trying to give us. It's a selfish act. You are suffering more than should be expected of you because of his irrational reaction to his illness. You are being expected to shoulder all of his care when there are others who could be supporting YOU and helping him.

Hello all. Can anyone tell me if they have had pain in the upper cheek bone- below the eye when laughing? I was so happy that I could finally make Brian laugh again sometimes and now every time that he does he grabs the side of his face. When I ask what is wrong he says he has a "crick in his cheek". He had a wisdom tooth cut out (that is how his cancer was found) on the upper right side. It was in the sinus cavity and that is where he seems to be hurting. Any suggestions what this is a sign or symptom of? We go from 75 mg MTX daily to a single 100 MG dose of Methotrexate once a week starting next week. That is the only update that I have on his "treatment" or lack of it. Teresa

Hey TL4885,

In just skimming forwards, it looked like this question got missed?

Not being a doctor or ever having played one on TV, I would remember to mention that "crick in his cheek" to a doctor for sure.

Post treatment, pains and twitches continue, but declined as time went on for me, with a few ticks still present after a couple of years.

Take the smile, laughter and apperent good mood as a gift to be enjoyed, while being the vigilant and devoted care giver that is seems you are.

I hope the journey is quick and sucessful,

UncleVern

UncleVern, Thanks for your reply. I checked for responses for a few days and figured everyone was just tired of responding to me because Brian is not willing to fight a conventional fight. I appreciate your taking the time to respond. He is still working but we are having a very rapid pulse rate. He goes to 100 mg of MTX next week. His Dr has told him his heart may not hold up to the dose, but this is Brians way. He IS going to die. I have accepted that, but I am in no way ready for it. He is not affectionate or loving anymore--not even in his tone, but I know he loves me. Days are hard and nights are so long, but we are making it pretty good. Thank you again so much for your support. It is appreciated more than you will ever know. Teresa

Theresa, I so feel for you. This must be so sad for you and you must have many, many questions as to why he won't have conventional treatment. I watched Steve have 7 weeks of treatment and not once did he seem as ill as your brian. I feel sad for Brian that he didn't give it a try and that in the end he's chosen a harder road. But it's not for me to say what he should do. I suppose he know's his own mind and trust me I know how hard it is to live with a stubborn man. But I do feel very sad for how hard this must be for you. You must be an incredibly strong woman to be able to go through this. My thoughts will be with you as you travel this painful road.

Wendy

Continued prayers your way.

Thanks to all for your continued support. We went to two doses of 150mg methotrexate this week. The first dose was Tuesday and was not too bad other than draining alot of Brian's energy. He had his mom shave his head on Wed. because his hair, which has always been extremely thick, was thinning to the point of being noticable. She noticed as she used the shears that is was falling out and raised some questions to him.I hope she will not let up until he finally reveals his condition to her.
Dose two at 150 mg was last night and he woke with very little vision this morning. Can anyone tell me if this is a temporary side effect or if vision impairment is usually permanent. I am, of course , very upset and concerned with this development. Thanks for any info you may be able to offer. Teresa

Hi Teresa,
I don't know much about the type of medication your friend is on but like other chemo therapies it sounds like it can cause a wide array of serious side effects. My husband was on 5fu and cisplatin. His treatment had to be briefly interrupted due to the severity of the side effects. Your friend needs to report these symptoms to his doctor...ASAP! Sometimes they can give him other medications to reduce the severity of the symptoms. Please tell him that there is no need for him to suffer like this and remind him that there are other treatment options.
Pat

Hi Teresa, sorry to say I'm not much help with the medication Brian is on. Steve had cisplatin and his only side effect was nausea. It's a shame you can't get Brian to check out this site. Hopefully it would make him realise that the path he has chosen seems so much harder than the conventional treatment that he didn't want. I hope you are both ok. You are both in my thoughts continously and I do wonder how you must be coping. You surely are a tough lady.

Wendy