Pray for hope for my baby sister..... - Oral Cancer Support

My little sister (23) was diagnosed with cancer in the right side of her tongue this past December. She endured radiation treatments and brachy (sp?) therapy. Two weeks later, her tumor reappeared on her tongue this time bigger. In May, she had the tumor removed and a flap constructed on her tongue. Her doctor assured my family that she was cancer free at the end of the surgery. In July, she began to experience pain and this past Wed (Aug 4) we found out that her cancer has returned to the same place and now is in her neck and throat, which affects her breathing and eating. She has a trach in and will need it basically forever and a feeding tube in her stomach.

We were told that there are no other surgeries that can be done. Her choices are chemo, experimental drugs, or nothing. She does not want to experience chemo, despite the fact that it could save her life. I fear that she has lost her hope in beating this. Is there anyone who experienced a similar situation and underwent chemo and the chemo worked? How did you keep your hope and will to fight? I desperately want her to fight, but ultimately I want her to be happy and out of pain. Any advice would be welcomed. I don't know if there's anything that I can say to her to restore her hope. I think she feels so defeated by her cancer. I know I can't possibly understand what she is going through. She doesn't know anyone her age who has had all of the surgeries and treatments fail. I think she is getting tired of fighting. How can I help her see that she can still beat this?

God Bless

Dear AMK, Damn this is hard for someone so young......the emotions get all mixed up, and the mental aspects are probably more difficult than the treatments. Coping with the idea that this can be life threatening is hard for everyone. Supporting loved ones during such times, goes beyond just survival. It can mean getting at some level to the point of accepting what might happen and then living each moment to the fullest.

I wish I had a miracle drug to tell you about ......but I don't. I will hope and pray that your sister will do better. Please tell us more about her story.

Dear AMK, Oh my heart is just breaking for your family esp, little sister..How tradgic is this. Cancer doesn't care who we are, what we are, how old we are..It just doesn't care. I promise you this, I will pray and pray and pray again for her.. GOD BLESS YOU!!!!!!! Always, Miss Vicki Lynn..

Dear AMK,

Welcome to the OCF site. I'm sorry to hear what your sister is going through, especially at such a young age -- sadly, there are quite a few people here who were caught totally off-guard with this illness in their 20's and 30's.

Is your sister being treated at a major cancer center? This is extremely important, particularly where her cancer has been spreading so aggressively.

Do you know what type of radiation she had? My understanding is that if she had IMRT at the original site, it would not preclude her from having additional radiation at a different site now (there are others on this board with more experience on this who can probably give you a fuller explanation). It would also help us to know the stage of the tumor that was removed, and whether she also had lymph nodes removed at the time.

I'm not sure I understand the chemo option you mentioned. It seems that with most head and neck cancers, chemo alone is not effective, but it is often used in conjunction with radiation to enhance the overall treatment.

I know it can be so overwhelming when you have to confront a disease like this and try to deal realistically with treatment options in a very short time frame. You will find a great deal of support and information here, and I hope it can give your sister some much needed encouragement. Please stay in touch and feel free to come back with more questions.

Cathy

Oh my gosh, I HATE this horrid disease!!! If there is anything I can do, please let me know, I live in Maryland, maybe not too far from you. Love, Carol

For those of you unaware, AMK is Kim's sister. Kim posted a few weeks back before this latest reoccurance. If you revisit her post, it will give you further details into her situation leading up to now.

AMK - It sounds to me that Kim is terrified of Chemo. She's been through hell and back, and she probably thinks chemo is worse than everything combined.

I opted out of chemo b/c the thought scared me to no end. I had visions of sickly little children hoping to see Fenway Park. Then I went into a Support Group where four young woman, like myself, WERE going through chemo (coincidentally all for breast cancer). After watching them each week, I realized it WAS something I could do. No, it's not fun, but it's also not unbearable.

Is she home from the hospital yet? Perhaps a social worker can visit her room and talk to her. Not try to convince her to do something different, but give her a chance to voice her thoughts and feelings out loud (or typed/written if she cannot talk yet). She can also return to the hospital and talk to them in their private conference rooms.

Another option is meeting/talking face-to-face with someone whose options/chances were little w/o chemo. Your doctors s/b able to find those people. There are individuals on this board that undoubtedly live nearby, have had chemo, and would be willing to speak with Kim.

Because of the major surgeries she went through, she may feel there's not quality of life, even if she did live. Perhaps this isn't something she's realized herself yet. Again, your doctors should be able to find someone that went through major surgeries and are quite happy with their new normal. And again, someone on this board may be willing to volunteer.

With everyone trying to talk her out of her decision, she may subconsciously be trying to rebell against it all. Perhaps by talking to her, getting her to start exploring her true reasons for giving up, she may change her mind.

From what I recall, she has not had radiation to her neck. As Cathy mentioned, this should still be an option to her. I can give you the names/number of Boston head/neck specialists and both Dana Farber and Mass General. Perhaps a phone conversation with someone there can provide you with additional insights and suggestions.

AMK, I would glady talk to her over the phone, even if she's just listening and cannot speak. Or if you have other suggestions, I am entirely willing to participate in them (as I'm sure most board members here would too).

Please keep us posted, we're a very caring bunch and truly want to help Kim however possible.

Sabrina

They have certainly made a lot of progress in chemotherapy since our relatives had it. They can control the nausea (if it even causes it) Even hairloss isn't a given thing. Some new chemos actually target specific molecules.

I am very sad to hear about your little sister. I will keep Kim and the family in my prayers.

AMK,

I too will be praying for Kim and your family. I definately agree with the others who mentioned that she should get more opinions as far as radiation etc...Are her current doctors at a comprehensive cancer center?

Please know that there are many of us that will be praying for her on this site.

Love,
Dani

Thank you all for your wonderful prayers and caring responses. Yes, Kim had radiation only in her tongue. However, the tumor is back again in the same spot and it has spread into her neck and throat, actually causing her to have difficulty breathing.

She is home from the hospital today with some bad news. She knew that she would have a trach (probably for a good while), but the button that would be attached so she can talk does not work because of her flap. She cannot talk, and the doctors don't know if she will able to until the trach is gone.

ALthough we (my family) aren't sure what will be involved in the chemo treatment, Kim has agreed to talk to the doctor on Thurs. She has expert doctors who made very horrible mistakes, even her last doctor. I believe she is being treated at a Cancer hospital. This was her 3rd time there. I am unsure of the stage of the cancer, but we do know that it has spread and is very aggressive. She had her lymph nodes out when she had 2/3 of her tongue removed. It just seems like nothing has worked out for her.

I am questioning the quality of her life. She is 23 and can't talk, eat, or breathe normally. Is this any way for her to live? I just don't know if I can handle losing her. I've heard of so many miracles happening to other people and I pray that one happens for her. I was hoping that if she had a positive "I will not let this cancer get the best of me" attitude, she would beat this, but it doesn't look like there is any way to restore her hope. It really hurts me to watch her going through the pain. I even feel guilty. Although I would never want what she has (no one does), I feel like it should've been happening to me - her older sister, and I would gladly take it from her if I could.

I'm sorry to ramble on. Thank you again for all of your kind thoughts and prayers.

Amk...You are welcome to say all you want here and it's not rambling. I'm so sorry things are so hard for your sister and for you. Watching someone you love suffer is incredibly hard. You mention her attitude...if positive attitudes alone saved people, my husband would still be alive today. Even doctors thought he could beat his cancer because he was fighting it with everything he had. So, encourage your sister to be strong and you continue to be there for her, but also allow her to feel how she feels. I'm sure you are already doing that. You sound like a great sister.

If you are questioning her quality of life, I'd say she is, too. Help her communicate with her doctors if you can by asking some tough questions about her options and the probable outcomes. At this point she is probably feeling quite powerless, which would make anyone want to give up.

I'm sure she is glad to have you in her corner. Keep seeking information on her behalf. Knowledge is power.

You are in my thoughts and prayers,

Christine

AMK,

I am so sorry to hear about Kim and I know it must be so difficult for you, too. I will be praying for miracles and for God's guidance and wisdom to direct the medical team to the absolute best possible treatment for Kim.

Ed

AMK,

I forgot your original request. I will pray for God to open Kim's heart to Him, for continued faith, hope and love.

God Bless you both.

Ed

AMK,
I have a sister 5 years younger then me that I could not imagine losing. I also have a daughter your sisters age. The thoughts of her dealing with any of this takes my breath away. You must be a very strong individual, I admire you. Please keep us posted on how Kim and yourself are doing.
Minnie

AMK -

I apologize for yet another never-ending message. I'm just trying to come up with anything that may be helpful to you. We care a great deal about Kim and you and want to see the very best outcome.

Many of us (probably most) went through some significant periods of time not being able to talk, eat, or even breath. And during that period, which may extend for many, many months, it was not a quality of life we were happy with. My situation wasn't as "serious" (though that's like saying your a little pregnant and a lot pregnant) as others, but there were quite a few times I spoke to my husband through AOL IM. He's sitting 6 feet from me, and that's the only way I could communicate to him. Or days I just couldn't get down those Ensures/water and lost weight/became dehydrated.

However, those situations did pass. They just take a while. Either we healed back to talking, eating, etc. or we adjusted to our "new normal". She's not able to breath now because the cancer is blocking her throat. That is fixable.

She's not able to eat b/c who CAN after those major surgeries and with the cancer blocking her throat. There are a some on this board that stuck with their PEG tubes for an extremely long time b/c they had to. Do they wish eating "normally" was an option for them? Sure. Do they prefer death over the PEG tube? I highly doubt it. I'm two months out of treatment, and still drinking at least 2 meals a day. That will eventually change, but even if it didn't, it's still worth fighting to live for (in my opinion).

There also people here that can't talk. You can ask the same questions as above and come with the same answers. What about people that are naturally mute? They've adjusted and live a life with QUALITY. It will just take time to get to that point.

As for the doctors - they all make mistakes, this one being outrageous in magnitude, but it does happen. Has Kim lost faith in these particular doctors? What if you went to another major cancer treatment center and met with new doctors? Miss Vicki's probably ready to beat me, b/c I seem to say that for everyone

. But it's a possiblity, right?

What about clinical trials at various centers? Jsut a suggestion on pooling family resources together, if it's an option: My co-worker (Brian) who sits in the next cube over is in a similar situation. His mother has pancreatic cancer and very few treatment options are available. She's in CT, his brother is in NY, and he's in Boston. As we speak, he's meeting with Mass Gen'l (and later this week Dana Farber) on their clinical trials. He brings his mother's records with him, but not his mother, and discusses her options with the doctors. The brother is doing the same with Sloan in NY. Another brother is going to the CT hospital appointments with the mother.

You may be able to send records to these major centers and speak via phone to the doctors. See what course of action they would take. Brian and I went onto Mass Gen'l and Dana Farbers website and downloaded the clinical trial decriptions.

Keep us posted. You're in our prayers every chance we get to say them.

Sabrina

Thank you all. Kim has lost faith in her doctors. She has been on the verge of hope, only to be knocked down again because her doctor did not listen to her about the pain she was experiencing and made a mistake - not diagnosing quickly enough and the cancer grew.

She is being treated at UPMC. It is the closest cancer facility to us. Cleveland might end up being an option, but that's still 2 hours away - a great distance when she has appointments every week.

We are not sure of the outcome of her situation. She is at home, but very tired and physically in pain. She is miserable and depressed. I am still angry that she was never given anything for depression. I think she would like to die and rid herself of all the pain and misery, but I don't know if I can handle losing her. I wish I could find some way to instill some hope into her. I don't know how though. It's very hard to see her like this, especially since she is one of the toughest people I know.

As far as her quality of life, she feels as if she has none. She commmunicates by dry erase board. She cannot eat or even breathe. The doctors don't know if she'll be able to talk again. For a 23 year old who is just starting out from college, what kind of life is that for her?

I think that she feels punished - that she is being punished with cancer for doing something wrong. I think she was chosen by God because he felt she was strong enough to beat it.

Tomorrow she has an appointment with a chemo doctor to discuss her options. I don't think she wants to do chemo (not that anyone wants to go through it). I think her decision will be to do nothing, which won't give her much time with us. I am just hoping that tomorrow the doctor can instill some optimism and hope in her. Reassure her that although it won't be easy, she can still beat this and recover - possibly eat, breathe, and talk again.

Thank you again for all of your support. I will update about the appointment. Keep Kim in your prayers as you are all in mine.

At 23 years old, I did not know for sure what I could endure, and I spent part of the period right before that age in a place where people were dying all around me, where fear, pain, and suffering were happening on a daily basis to hundreds. I do not think that any of them who survived that experience look back at that period now, and wish that they had followed their gut instinct to give up. Though may of us were scared enough to want to quit, injured enough to believe that life with out limbs, or horrific physical and emotional scaring would not be a life not worth living. Years of productive lives later, even if living with physical compromises, have proven to them that staying the course, fighting on in spite of the pain, disfigurements, issues related to quality of life, were all worth it, and they are stronger individuals now for having faced that enormous emotional challenge and over coming it. She is reacting to and experiencing fear. Fear of the disease, fear of death, fear of the treatment, fear of the compromised life that may be ahead of her, fear of the unknown. The best support she could get right now would be someone listening to that fear, letting her express it, and being supportive of a position that would help her see a way through it. I do not know that these doctors have made serious mistakes, and what she is dealing with may be the results of the best decisions that could be made at the time given the information and testing that was available to them. The treatment of cancer is part art and part science. It is certainly not an exact science at that, and even the best of doctors are only working within the confines of our very limited knowledge of cancer. She needs to talk this through with a professional psycho-oncologist. For as supportive of her as you are, she may need more from someone that can talk her through the issues and keep it in the realm of that which she can comprehend and deal with. Hope comes from within, but sometimes that hope has to be teased out of the jungle of other issues and fears by someone who knows how to help someone find it. There are people who only do this one type of therapy every day with those suffering from cancer. You need to find such a person for her.

It is clear that you are a religious person, and I respect that, but I categorically disagree with any thought that GOD

Update on Kim:

We went to see the Chemo specialist today. He is a very nice and compassionate doctor. Kim seemed to like him. My mom made sure to stress to him that Kim wants him to listen to her when she feels that something is wrong and act on it, which none of her other doctors did. He agreed and seemed really shocked by what my mother said about the other doctors.

Kim gained 6 pounds since last week - yeah! AND she was finally given a prescription for an anti-depressant! I personally feel that she should have been given this at the very beginning. The petscan confirmed that she does have cancer in her throat, neck, and flap on her tongue. Apparently, when she had her lymph nodes removed, they didn't remove all of them. We were all very stunned by this since her doctor did not say he was only taking out the infected ones. It's very disappointing. Anyways, they also said that they saw something around her lungs, but they weren't sure that it was cancer. It was shocking and he didn't go into it too much. Kim's oncologist will discuss the petscan with her in more detail at her appointment next week. However, the chemo will treat the whole body unlike radiation which focuses on a specific part.

The doctor wants to start her on a first round of single dosage chemo that will last 6-8 weeks. He would like to begin next week since her cancer is so aggressive and he doesn't want to wait for it to get worse. According to the doctor, the first round of chemo will have some side effects, but they can be controlled such as nausea, vomitting, fatigue, and mouth sores. She will not lose her hair in this first round. he also said that she will have new scans every 2 weeks to see what progress the chemo is making. Hopefully it will make tremendous progress. He said that he can't guarantee anything, and the chemo will not get rid of the cancer, but it might give her more time. How much was not said, but more time is good. I'm praying for a miracle. Third time's a charm right?

Kim agreed to try the first round of chemo, but if she doesn't like it, she will quit. I told her that if she does lose her hair, I will cut mine short (I can't shave it because of my profession), and my brother and husband said they would shave theirs too. Kim has so much support from everyone. I only wish that God would answer our prayers and rid her of this as well as everyone else out there.

Although we should not think that God planned for her to have this terrible burden because of her strength, it is better for her to think that than think she is being punished by God. She was feeling that way for a very long time. My mom believes that God has a plan for everyone and that this is all part of his plan, but we can't figur out why. I hope that doesn't offend anyone's beliefs. We are just trying to instill some positive perspective into Kim.

Please keep her in your prayers as she continues to battle and ventures into chemo. I'm praying that the road ahead of her isn't too tough.

God Bless

Dear AMK,

Thanks for the update -- I hope and pray that she will see some improvement from her next round of treatment, and that you and your family will have the strength you need right now.

Cathy

AMK,

I am encouraged to hear Kim is feeling a little bit better about her current doctor. I am so sorry all of you have to go through such a difficult time. I am praying for God to direct the medical team to the absolute best possible treatment plan and comfort and peace to Kim and all of you.

Ed

AMK,

The fact that Kim has gained weight is a very good thing. I take this as very good news given the nature of the challanges she's enduring. The anti-depressants should be helpful as well.

I had chemo as part of my treatment and I can categorically state that it was a much, much easier ride for me than the radiation.

While Kim is getting her chemo therapy, I would encourage you to research clinic trial possibilities for her.

My very best wishes...

-Brett

AMK -

I'm crying b/c I'm SOO happy Kim's going to try chemo. And that's WONDERFUL that you're all cutting/shaving your hair. Remember - you can get a wig too

!!! The girls in my support group had AWESOME ones! I was so jealous b/c they looked SOO perfect!! AND they didn't have to do their hair in the morning, no "bad hair" days, no shaving - there are some definite pluses to chemo!! OH! And they also swore by EMEND )(drug) for nausea!

Those girls said little presents really helped them. They'd come home from the chemo treatment and a little something would be on their bed - a bracelet, bath salts, cds, whatever. One girl was in the hospital for a week, and she was given a present for each day to open. It's sounds so trivial - you don't have to spend a lot of money - but it really does make a difference.

You could see, too, if she's be willing to sign up for for chemoangels.com (note to others, you don't have to be going through chemo to utilize this). An "angel" would "adopt" her and send her little gifts and cards through treatment. Those same girls did that, and it helped raise their spirits each package.

Thank you so much for keeping us posted. Good news or otherwise, we definitely want to know how she's doing.

Sending Love,
Sabrina

Again, all your prayers and thoughts are greatly appreciated. Kim didn't have a good day today. Her face is starting to swell from the tumors and she is in a lot of pain. She is getting migraines often and she can only take Tylenol (which doesn't do much) to help relieve the pain.

We are happy that she is trying chemo. I just wish that we could find some way to raise her hopes and give her some optimism. She has just started taking an anti-depressant so hopefully that will help.

Her chemo specialist would like her start treatment next week, but she has to have her pain controlled before she begins. Right now her pain is a 9 out of 10. The pain doctor is really worthless as far as I'm concerned.

I am signing her up at chemoangel.com. Sabrina, thank you for the info. My mom asked her and Kim nodded yes that she would like try it.

Brett I'm not sure what you mean about clinic trial possibilities. Could you elaborate for me as this is all very new to me.

Today, I also had more than 10 inches of my hair cut to donate to the Cancer Society for wigs. I figure that any little bit that I can contribute is a good thing.

Well, I will keep you all posted as she has several appointments next week and then chemo begins.

Dear AMK,
I am praying for you, Kim, and your entire family. I agree with your mom that God has a purpose for each of us. Not to say that I understand at all that my husband is battling cancer, but I am daily asking God for healing and also strength, courage and wisdom to be what I need to be in all of this...I can say that God has been with me thru the crying and fear. I have felt lonely, but never really alone. I feel that He is hearing me, feeling my pain and walking beside Dan and I in this journey. I read somewhere to try and not worry about tomorrow because it does not belong to us, but to God. Makes great sense to me.
Take care and God bless,
Debbie

amk -- what kind of chemo is your sis having? I'm currently going through chemo and radiation treatments, using Cisplatin as the chemo drug. I had all these fears of side effects going in as well, but I've yet to get sick or anything so far (i've had two infusions -- the second one was Tuesday)... Basically, it takes my stomach for a queasy ride for 2-3 days (whereby food doesn't look or smell at all appealing to me), then I slowly return to normal...

Glad to hear she is giving chemo a go... you both are in my thoughts and prayers... I'm 33, a little older than your sis, but can identify with fighting this "young."

I don't know all the theology behind cancer and God, but I do know that God promises to never leave us nor forsake us, and that He loves us much more than we can ever ask or imagine (even though our circumstances sometimes don't reflect that)... I've taken great comfort in that over these past months and such...

Eric

Hello, amk. God bless you for working so hard on your sister's behalf. I, too, cannot imagine dealing with something like this at such an early age.
Although I know much better, I had bouts of concern that things that I had done in MY life were the cause of my husband's illness. Silly, and stupid, I know, but rationality goes right out the window in the face of fear, does it not?
How far are you from Johns Hopkins in Baltimore?
They have the #1 Head and Neck Oncology dept in the US as I understand it. Had we not been so comfortable with the oncologists at UVA, we'd have been happy to drive the extra distance to use Johns Hopkins' team. I believe they have residential places to stay so you could avoid traveling. I know it is hard to away from home during an illness, but finding/utilizing the best medical care available is worth the disruption. We live about 2 hours away from UVA and once Tom begins daily radiation/chemo, we've elected to stay near the hospital. I may commute to work a few days a week, and let the cancer center volunteers take Tom to treatments, if I feel he'd be comfortable doing that.

With all the other prayers, believe that ours will be included. If I may, I'll send you a private post with a prayer we say daily.
God bless you and your family.
Nicki

Nicki (and others who travel long distance for radiation) -- not sure if this is available where you are, but the American Cancer Society in Arizona has been putting my wife and I up in hotels during radiation weeks.

My radiation is in Phoenix, about 100 miles from home. Especially on chemo weeks, I just can't make the trips back and forth every day.

My radiation oncologist nurse set it up for us, through the ACS. They've put us in some pretty nice places, even a resort in Tempe one week. Might be worth looking into where you are. I know there is NO WAY we could have afforded paying for hotels over 7 straight weeks...

AMK,
Dan had his treatments and is having follow ups with University of MD Medical Center. We have been very happy with them also. Don't have to wait near as long for appts. as John Hopkins. They have a tumor board and we have felt like Dan has received the best treatment possible for his cancer.
Take care and God bless,
Debbie

AMK,
I am so sorry to hear about your sister & everything you are going through.

I too would strongly encourage getting a 2nd opinion from a comprehensive cancer center - your Dr's can fax them everything or you can get copies of everything and fax them yourself.

You & your family our in our prayers & God does have a plan for each of us.

May God hold you tighter than ever during this time,
Pam

Dear AMK..this thread is heartbreaking..I am sure everyone here feels as I do , I wish we could physically be there to help, to motivate, to advise.
These folks have been thru it all , they can help!
May Your God go with you.
Marica
Caregiver to husband Pete. Stage IV base of tongue.
One year PET clear this week

AMK

I've heard the same about John Hopkins from numerous sources.

The local hospitals here list their clinical trials on their website (again, Dana and Mass Gen'l). You may have something available at John Hopkins or Kim's hospital.

Kim will have her good days and her bad days. If you run a search on pain meds, people always list them off in their posts. The Ana-Trampoline sounding med (correct spelling under head pains) was given to me during treatment to help with some of the psycho sematic issues related to treatment. It helped to give me a good night's sleep, which no one can say is hurtful. It's also a muscle relaxer apparently, which may help her headaches (and what I'm currently using it for post-treatment). It's an old anti-depressant, so maybe they can presribe it at anti-depressant levels for her depression, too. Take out a bunch of birds with one stone.

Our prayers are with you, as they are with everyone going through a difficult time here. Please continue to keep us posted.

Sabrina