Still struggling after 3 years in remission

Kaobe

 Today I am officially in remission for 3 years after having stage 4 cancer in my maxillary sinus on the left side of my face and had 30 sessions of radiation after major surgery. I was just at the doctor a week ago and everything looks goand but I'm still struggling a lot with all the repercussions after my surgeries, radiation, and medications. I am still on Fetynal and oxycodone for my pain and nerve damage yet I still struggle a good deal with pain in my face and neck. I guess before I explain my issues I'll tell you what I all had done during treatments.  I am a 26 year old female and cancer does not Erin in my family so I don't really have anyone yahoo can understand what I'm going through. 

After I was diagnosed with my cancer I had my first surgery which they had to remove my maxillary sinus, a bone next to it, the roof of my mouth, the gum and teeth on the top left side, and a lymphnode. I was in the hospital for 5 days and had an extreme amount of pain that I could've never imagined. A month after my first surgery I had 30 sessions of radiation that we're around 30 minutes long each time on the lower left side of my face. Since I had so much removed out of my mouth I got an opterator(not sure how to spell it) or denture as some call it, and my jaw ended up locking that I couldn't even stick my finger in my mouth so I was put on a liquid diet since I wasn't able to fit any food in my mouth. Then one time at the doctor's office a doctor that I usually didn't see wanted me to take my denture out so she could look at how the hole was healing, so she literally forced my mouth open to the point I was screaming in pain. I finally got to leave the appointment, and my mouth and jaw were still in excruciating pain for the rest of the night. The day after my doctor appointment my left side of my face and jaw swelled up to the point that I looked like a chipmunk. The day after that I woke up with a small lump on the side of my neck underneath my jaw, and it hurt very badly that all I could so was put ice on my neck. During the week after the lump continued to grow and got to the size of a baseball. At this point the pain was unbearable but I was too afraid to go back to the other doctor so I made an appointment with my family doctor. The day before my appointment I was up with my collar bone wet and saw the lump was dripping a little bit. So I trit's to lightly dry it off and it ended up opening causing everything to literally pour out. So w when I went to my family doctor the lump had flattend out but was still draining. He told me it was an abscess and gave me antibiotics. Four weeks and 4 antibiotics later my neck was still in a lot of pain and continuously draining. I finally got referred to a new oncologist who specializes in head and neck cancer and was also an ENT. With in the first 5 minutes that he saw me he told he I was not going home and that he was admitting me to the hospital for the next five days. I had to stay on antibiotics through the IV the entire time and left the hospital with a PICC line in my arm which I had to continue the antibiotics 3x a day for 8 weeks. I ended up having a staff infection in my jaw, so 6 weeks afget leaving the hospital I had to get another surgery where my new doctor had to scrape the rest of the infection out and part of my jaw line that was destroyed by the infection. The doctor said there was a fracture in my jaw that ended up healing itself which causes the infection, I explained to him what the other doctor did and he said there was a good chance that she had fractured my jaw while forcing it open but there was no way to prove it because radiation has a slight chance of causing it as well. 

Now after going through all this I delt with a great deal of pain on the whole left side of my face and neck and my tongue was exetremely raw from radiation. Now 3 years later my tongue is still extremely sensative that I can't not eat anything spicy to the point if you see any specs of pepper I can't eat it including chicken nuggets. I can't drink anything carbonated including soda or energy drinks because it burns my mouth. Instead of me losing my taste I ended up having it magnified that now a lot of foods I once loved I am unable to handle the pain they cause. I also have trouble swollowing foods pretty often as well. My jaw has opened up a little better that Im able to get food in now I just can't open it very wide and I have to eat everything in small bites or I can't fit it in. In reality though the food and eating have actually been the least of my problems.

I ended get getting severe depression after everything that I'm still dealing with 3 years later. I've seen numerous specialist and had very many tests to see what is also causing my other health problems. Now I'm still dealing with daily nausea even with my nausea medicine and a lot of stomach pains. I also get a lot of hot flashes very frequently that I'm almost always warm even in these winter months, and it gets so bad to the point that I sweat til Im soaked and sometimes causes my pain patches to fall off my back that the glue won't stick to my skin when it's damp. I have a horrible time sleeping at night and even when I do get enough sleep I'm almost always tired and fatigued that I barely have the energy to do anything I uses to love. I have a lot more sick days than days that I feel good and it's really starting to take a tole on my life. My depression continues to get worse due to the frustration of not feeling any better and the doctors have no idea how todoz anything since all the tests n blood work come back that nothing's wrong. Im so tired of doctors telling me "good news all your tests came back negative" which to me is not good news because it means they still don't know whats wrong. 

Every thing has changed my life for the worse that I lost of a lot of friends from all this, and I lost almost all interests in activities I used to love doing. That I lost all interest in doing anything that I feel so sick hald the time that I don't want to leave my house or even leave my bed. All because I don't feel good that I just feel so sick on a daily basis. And my doctor can only tell me it takes time, and Im just like its been 3 years how much time does it take?!? I'm way to young to deal with all this and I want my life back. I've always been a very happy go lucky person who enjoyed life and was always with friends having fun. Now I really hate my life and want my oldself back. I tried all different things but nothing helps. If anyone else deals with some of the same issues can you please tell me if you were able to fix any of these problems. I would love to hear some insite from people dealing with similar issues, my cancer is a rare type to begin with and usually found in people over the age of 60, so I would love to hear some help from people a lot younger than that. Thank you very much and I apologize I wrote so much lol I truly need all the help I can get, I already tried all other options I've been given and I do not know what else to do.

longtermsurvivor

Hi Kaobe

You have certainly been through a lot.  There are others here who have stories somewhat like yours, and if you will stick around I'm sure they will eventually come by to talk to you.  At three years out, you are pretty much stuck in your current situation, until and unless someone can figure out how to help you feel better.  I don't know if the same doctors have done all the treatements and visits for you through the years, or if you've moved from one institution to another, but if the guys you are seeing dont have a plan for you, it is time to go looking for a new team to  give you a good going over.  I say that because we all get stuck, both patients and doctors, putting blinders on after awhile and not thinking of new options.

 

You need to make a list of your needs/priorities, and I mean a list that is written down.  You need to put that list in front of the new team, and tell them exactly what your priorities are.  Those priorities might look something like this:

1) I hurt too much, and I need help to get the pain under control.

2) I can't eat properly, and I need to optimize my food and ability to injest food.

3)  I can't sleep properly  at night.

4) I am depressed and I need proper treatment for this.  (Yes, you are depressed.  Imagine after all you've been through that this might be the case?)

Your evaluation and treatment are complicated,  and require a TEAM of experts to properly handle.  That team  might consist of the following experts:

ENT oncology

Physical medicine specialist

Nutritionist

Plastiic surgeon

Oncologic dentist

Pain management specialist

That type of team can only be assembled at a major medical center.  Don't know where you live, or what is available to you.  If you'll keep posting here, lots of people are present from all over the country.  I'll bet we can come up with some ideas.

 

Best to you.

 

Pat

 

katenorwood

not fair at all

Kaobe,

I whole heartly agree with Pat on these issues.  We as cancer survivors deserve to be pain free and treated with dignity.  I am going to congradulate you on 3 YEARS of no evidence of disease....this is HUGE !  But I can't imagine enduring all you have gone through.  Please take Pat's advice and maybe get that other opinion on all the unresolved issues.  And please know we are all in your corner here.  Keep us posted, and keep as positive as you can.  Warmest regards sent !    Katie

Skiffin16

Welcome Kaobe

Though you might not realize it in your current situation...you are at a very good starting point for survival...

You are a live, and you have survived three years post treatment....so from the point of being survival and longevity, that is huge... 

Now so as not to leave you thinking I am unsensitive and uncaring of your situation..., I'm not, not at all.

I definitely would re-read Pat's reply...especially the part where he mentions if you have been some what stagnant with the same team of MD's for awhile...

Well it might just be time to, no it's definitely time to seek a new team... Someone with a fresh look..., someone that hasn't been dealing with your current situation for a while and might have lost the objective of making you feel better.

Also as Pat mentioned, there are a few here with similar stories and situations...

If anyone can help you, more than likely they'll be here.

Thoughts and Prayers,

John

 

 

 

Kaobe

longtermsurvivor said:

Hi Kaobe

You have certainly been through a lot.  There are others here who have stories somewhat like yours, and if you will stick around I'm sure they will eventually come by to talk to you.  At three years out, you are pretty much stuck in your current situation, until and unless someone can figure out how to help you feel better.  I don't know if the same doctors have done all the treatements and visits for you through the years, or if you've moved from one institution to another, but if the guys you are seeing dont have a plan for you, it is time to go looking for a new team to  give you a good going over.  I say that because we all get stuck, both patients and doctors, putting blinders on after awhile and not thinking of new options.

 

You need to make a list of your needs/priorities, and I mean a list that is written down.  You need to put that list in front of the new team, and tell them exactly what your priorities are.  Those priorities might look something like this:

1) I hurt too much, and I need help to get the pain under control.

2) I can't eat properly, and I need to optimize my food and ability to injest food.

3)  I can't sleep properly  at night.

4) I am depressed and I need proper treatment for this.  (Yes, you are depressed.  Imagine after all you've been through that this might be the case?)

Your evaluation and treatment are complicated,  and require a TEAM of experts to properly handle.  That team  might consist of the following experts:

ENT oncology

Physical medicine specialist

Nutritionist

Plastiic surgeon

Oncologic dentist

Pain management specialist

That type of team can only be assembled at a major medical center.  Don't know where you live, or what is available to you.  If you'll keep posting here, lots of people are present from all over the country.  I'll bet we can come up with some ideas.

 

Best to you.

 

Pat

 

Thanks for your response. I

Thanks for your response. I am actually on my 2nd team of ENT oncologist, pain management, and oncologist dentists. I live in Reading, Pa and I go to Philly for my doctors because the hospitals that are local to me didn't want to see me that my cancer was too rare for them. I started at Fox Chase and they're the ones who forced my jaw open and caused my staff infection. So I saw my family doctor and he referred me to a regular ENT when I had the infection and then the ENT referred me to University Of Penn. and they're the ones I see now. I also saw an endocrinologist in the mix of things to get my thyroid checked and my hormone levels to make sure that was all ok and wasn't causing my hot flashes. I have a psychriatrist that I want to see for my depression as well because my family doctor gave me 4 different depression meds that didn't work and I did therapy that didn't work as well. I just can't keep struggling with all this because I'm completely miserable and the more time that passes the more I lose hope of every getting better. I'm a hairdresser so I speak to all different people all the time and many of them have had more common types of cancer and a lot of them said it took about 3 years for them to get back to normal and I'm at my 3 year mark witI not much improvements. My depression has played a big part in making lose friends and I have a girlfriend that complains about me continuously that I have changed and stuff because I no longer want to be affectionate or Anything along those lines. But I told her I can not work on or fix our relationship until I fix myself first. I'm just running out of options and resources so I wanted to find out other options from people in similar a situations because I do not know anyone personally who has gone through anything like I have. That other cancers are different than head and neck cancer. I just want to feel good, be happy, and have my positive outlook on life again.

CivilMatt

3 years too long

Kaobe,

 

Welcome to the H&N forum.  Your 3 years of beating the cancer is fantastic, but your 3-years of pain is horrendous.  Hopefulness is all I’ve got to offer.  It is about time for the right combination of doctors to truly help you out.  After all I want you to enjoy your success against the beast.

 

Best,

 

Matt

Tim6003

CivilMatt said:

3 years too long

Kaobe,

 

Welcome to the H&N forum.  Your 3 years of beating the cancer is fantastic, but your 3-years of pain is horrendous.  Hopefulness is all I’ve got to offer.  It is about time for the right combination of doctors to truly help you out.  After all I want you to enjoy your success against the beast.

 

Best,

 

Matt

Hi Kaobe ...

I know tellling you how sorry I am you have to endure 3 years of what you have is no help, but as a fellow H&N cancer patient, I do care.  I am now 1 year out and I know 6 months ago I could totally relate to how you feel, I can't imagine still being in that situation.

I'm glad you posted here.  There is a lot of long term experienced folks on here.  I am not one of them.  Being only 1 year out and at age 49 I am not what you had hoped for regarding advice or similar story

However, with all that said I agree with what others on here posted.  For me personally it seems the pain and the sleep are the biggest issue.  I was never a good sleeper even before cancer, after cancer it seemed sleep was even harder to come by.  My oncologist prescribed me Ambien, 1 small pill every night before bed and boy does it do wonders.  Where I used to wake up so much at night and stir, now I sleep through the night.  But, with pain it must be hard to sleep through the night.  I think Pat is right on about getting the pain under control, but maybe a prescritpion medicine can help you sleep better at night, maybe.

I remember telling my wife a ways back "it would be so nice to have a day with no pain" ...so I hurt for you that you have the pain still and I pray you can find a team that will help.

I can't pretend to be able to understand what you are going through, again, 3 years!! Stick with the folks here and maybe all of us can lend some fresh support in the way of encouragement and advice while you find that new team or have a fresh meeting of the minds if you will with your current team and tell them you need remedy.

I know you said you had a bad experience at FOX cancer center, but they are rated number 11 in the country as far as a major medical treatment center, do they have another doctor other than the one that forced your jaw open?

http://www.phillymag.com/articles/features-centers-of-excellence-cancer/   I found this link to Philly and it shows quite a few major cancer centers in that area...maybe one of these can give you a fresh start.

Keep us posted and hang in there Kaobe, we care and we want you to be well.

Best,

Tim

Pam M

Wow

I can't offer much advice.  I'm one of the luckly ones - I'm usually in no pain (unless I'm eating certain foods or having a spasm).  Hoping that your new team can get on the stick, and help you find relief.

cureitall66

3 YEARS! Amen Girl!

Kaobe,

First CONGRATULATIONS on your 3 years! What a road you have traveled. 

I'm sorry that you have encountered so many issues along the way. It sounds like you have done a great job in keeping up with your health the best you can. You have the persistent personality to get to the bottom of it, because you want to feel better....I can tell by your writing.

As Pat and the others have mentioned, it sounds like time to change things up. So get yourself a list as Pat mentioned, a new team for another look at things and step into those combat boots! You are a very strong young lady...stronger than you think you are. I would strongly suggest that you also find a good support group. Whether it start out with some new friends (may include other cancer survivors) who can either relate or have some compassion for what you've gone through. Unfortunately, there are people out there (including those that have been our friends in the past or currently) that do not know how to handle this sort of thing with emotions. Sometimes, we lose friends along the way. This is not your fault if you do. Being here on this forum will be your start of support. I encourage you to stay with us and vent and grab advice when you can. Continue to see your therapist...having someone there to talk through all of this is very good for the mind. Have you thought about joining a yoga class or simply try to meditate? Having the time alone that you experience is not necessarily a bad thing, it's your time to sort this all out and to give your body the rest that it needs. But, do try to get outside when you are feeling depressed and take a nice walk. Do you have any pets? I know many find them very comforting. A cat is one of the simplest to take care of and rather soothing for our innerself.

I really think you have already made a great step in reaching out here to the forum, please stay with us. Also seek the advice that others have offered here. Sometimes we have to be reminded of the simplest of things to put things back in order. I think if you find the right team that has some compassion and try some simple daily changes in your life, you will find that there are small improvements that will come...even if they are small. Hold onto that....as time goes on it will get better. But, you must seek some additional help with getting your pain managed...from there, things will look up.

Put a smile on your face and get your thoughts together to make your plan....perfect time with the New Year! You can do this.

God Bless,

~Cureitall  

Joshua 1:9   " Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go." 

Kaobe

Thank you everyone again for

Thank you everyone again for the responses. But I'm starting to do a lot worse with my depression. I barely leave my house except to go to work once or twice to work but I usually a feel bad there too. I have had multiple doctors, tests, everything they nothing is physically wrong that anyone can seem to find. Even switched from Fox Chase to University of Penn 2 years ago but no one can seem to help. My family dr has also tried numerous depression meds yet nothing seems to work. My pain meds seem to be doing pretty good that I don't alway have a lot of pain anymore in my face but I'm still struggling almost every day with migraines, stomach pain, body aches, fatigue, and completely loss of appetite which is odd for me because after not being able to eat anything for a year during all my treatments I really made sure I'd eat what I could once I could start eating to bring my weight up. During that time I lost 30lbs in the first 2 months and I've always had a steady weight of 135-145 but once I was during treatments I dropped to 112lbs. My weight did get back to normal after a ffew months of eating again but now I'm starting to struggle with that. I'm nauseas all the time which makes me not want to eat n now I back to 125lbs. Last month I lost 10lbs between dr visits n now I lost another 5 with out trying anything at all.

 My depression tho is I'm pretty sure a good causoff or how I physically feel but it's like I survived yet I hate my life more now than before when I keep reading how surviving changes a lot of people's lives for the better making them love life more. When I'm the complete opposite that I hate everything, don't know what my hobbies are anymore other than doing hair and laying in bed watching movies. Just seems the more time that passes the worse I become. And I never dealt with depression before I had cancer. I actually was the happiest I've ever beedud or the entire year before I was diagnosed. I tried therapy she made me worse. Just hard when I'm only 26 so I'm supposedly very young for the rare cancer I had so no one knows how to fix me. I just don't know how much longer I can live like this and most the time I usually feel too bad to even try to go anywhere for help and to be honest I really don't want to do therapy just because I've been talking about everything for 3 years now and im tired of talking about it. So I'm stuck in my misery n pain n can't seem to shake it.

longtermsurvivor

Kaobe said:

Thank you everyone again for

Thank you everyone again for the responses. But I'm starting to do a lot worse with my depression. I barely leave my house except to go to work once or twice to work but I usually a feel bad there too. I have had multiple doctors, tests, everything they nothing is physically wrong that anyone can seem to find. Even switched from Fox Chase to University of Penn 2 years ago but no one can seem to help. My family dr has also tried numerous depression meds yet nothing seems to work. My pain meds seem to be doing pretty good that I don't alway have a lot of pain anymore in my face but I'm still struggling almost every day with migraines, stomach pain, body aches, fatigue, and completely loss of appetite which is odd for me because after not being able to eat anything for a year during all my treatments I really made sure I'd eat what I could once I could start eating to bring my weight up. During that time I lost 30lbs in the first 2 months and I've always had a steady weight of 135-145 but once I was during treatments I dropped to 112lbs. My weight did get back to normal after a ffew months of eating again but now I'm starting to struggle with that. I'm nauseas all the time which makes me not want to eat n now I back to 125lbs. Last month I lost 10lbs between dr visits n now I lost another 5 with out trying anything at all.

 My depression tho is I'm pretty sure a good causoff or how I physically feel but it's like I survived yet I hate my life more now than before when I keep reading how surviving changes a lot of people's lives for the better making them love life more. When I'm the complete opposite that I hate everything, don't know what my hobbies are anymore other than doing hair and laying in bed watching movies. Just seems the more time that passes the worse I become. And I never dealt with depression before I had cancer. I actually was the happiest I've ever beedud or the entire year before I was diagnosed. I tried therapy she made me worse. Just hard when I'm only 26 so I'm supposedly very young for the rare cancer I had so no one knows how to fix me. I just don't know how much longer I can live like this and most the time I usually feel too bad to even try to go anywhere for help and to be honest I really don't want to do therapy just because I've been talking about everything for 3 years now and im tired of talking about it. So I'm stuck in my misery n pain n can't seem to shake it.

Hi again Kaobe

Depression is like many other illnesses.  It doesn't so much matter what started it.  It rather matters how it is dealt with.  At some point, there is a place in the treatment of this disease to be an inpatient rather than an outpatient.  If multiple medication treatment has not helped, and you havent any other plans for defeating it, you need to seriously consider an inpatient stay.  And honestly, therapy is mandatory, not a choice.  You really can't defeat this problem without it.

 

best regards

 

Pat

 

 

hwt

longtermsurvivor said:

Hi again Kaobe

Depression is like many other illnesses.  It doesn't so much matter what started it.  It rather matters how it is dealt with.  At some point, there is a place in the treatment of this disease to be an inpatient rather than an outpatient.  If multiple medication treatment has not helped, and you havent any other plans for defeating it, you need to seriously consider an inpatient stay.  And honestly, therapy is mandatory, not a choice.  You really can't defeat this problem without it.

 

best regards

 

Pat

 

 

Agree

Depression is very serious and should be treated as such. The right help is out there, insist on it.