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Thinking about quitting chemo

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

After three chemo treatments, I'm thinking about quitting and taking my chances the surgery got the cancer.  I'm Stage II UPSC and I know it's an aggressive cancer but I had two CT scans after surgery and they couldn't find any tumors.  My doctor told me I had a 50/50 chance after surgery that he had gotten it.  With chemo and radiation, that went to 80%.

In 1975 I was burned with hot grease over 20% of my body.  It was the most painful thing I have ever been through.  I was in the hospital for about a month and it took another six months for my body to totally heal from the treatment.  It took my mind almost 10 YEARS to heal.  I would have night terrors many nights that I was burnt again.  I saw psychiatrists and tried multi-treatment - therapy and medication.  FINALLY, we moved and after about a year, they stopped.  If I had not had young children, I would have killed myself - there is no question in my mind.  

I have started having night terrors again!  My PA thought it was the oxycotin but I think it's the trama of chemo.  My last chemo was a week ago Tuesday and I was up most of last night, afraid to sleep.  Last Sunday when I was up 36+ hours straight I would have killed myself if I would have had a nice, clean way to do it.  I thought of it again last night while I sat here in the family room with all the lights on because I'm afraid to close my eyes.  I grind my teeth during these nightmares so bad, I break off teeth.  Sometimes while clenching my jaw, my teeth slip and I take a big chunk out of my cheek or tongue.

On Tuesday I have an appointment with my gyno/oncologist to see if he can save my port.  It's still infected and it hurts so I don't have a lot of hope.  My one good vein is blown out so I'm sure it will take multiple tries to get another one.....there have been times we've been in the teens with tries to get a useable vein.  

If this chemo is that tramatic for me, I can't imagine living another ten years with the night terrors and all the psychiatric problems not being able to sleep cause.  

What's the difference if the cancer kills me or I kill myself?

I am so lucky to have this group!!

Love,

Eldri

TeddyandBears_Mom's picture
TeddyandBears_Mom
Posts: 1477
Joined: Jun 2015

I so wish I had the wisdom to say just the right things here. Unfortunately, I don't... So, I'm sending you my heartfelt words in hopes they will at least let you know you are not alone and have tons of support on this board. I'm sorry you have had such a rough time. And, I wonder if there is an alternativie chemo that may give you a break in some of the side effects?  I hope you plan to talk to your gyn/oncologist about all of your issues.  There just may be a solution that you haven't thought of and / or that none of us here know about. The nightmares have to be so frightening. And, if you are having thoughts of suicide, it may be time to get some help (again) from a therapist instead of your PA?

You are special and I have heard your laughter and felt your sense of humor through your postings. Please don't let any of this rob you or your family your spirit.

Stay strong Eldri and please reach out to your medical team.

Love and Hugs,

Cindi

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Eldri, please reach out to your oncologist and therapist. If the chemo is causing such bad dreams and suicidal thoughts maybe you should stop it unless the side effects can be addressed better than they are now.  Sue

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I wish that I had the perfect words for you and I wish I could take your suffering away.  I will keep you in my prayers.  You are a special, beautiful person and you are needed here by your family and friends.  Please talk to your Gyno-Onc  about all your problems and thoughts.  I am sure he can find help for you. I have heard that OxyContin can cause night terrors. PAs can be good, but I think you need someone higher up the food chain to help with all the health issues that keep hitting you.  My PA is the sweetest lady, but she recently gave me many perscriptions for nausea when in reality I had a tumor grow through and blocking my small intestines.

You are a strong lady who has already been through so much, you can handle this.  Sending you all th Hugs, Love and prayers that I have, Lou Ann. 

debrajo's picture
debrajo
Posts: 1095
Joined: Sep 2011

I know your terror....I have been where you are.  I still stay up most of the nights to avoid sleep.  It was 4:00 a.m. before I went to sleep last night.  The dreams, the nightmares are more vivid from the chemo and steroids, not to mention the PTSD we all have.  I take Xanax and Prozac on a daily bases to keep me "stable".  When I do sleep, I wake to both arms clutched across my chest and both hands curled into tight fists'.  M head is pulled so far back my neck is in a spasim.  It's not Just the crap we have been through, but a life time of crap.  I don't know exactly what the answer is, but I am a firm beliver in medication.  I've been called many terrible names because of the drugs, but I would hate to think where I'd be without them...probaly dead.  Yes, I have been sucidal, even before cancer, when my son died and several other things.  You are half way done with chemo...I am UPSC also.  It is traumatic, painful, fearful, frustrating, mentally exausting, and, for me, made me mad as Hell!  More than one medical professional has been on the fighting side of me during treatment!  I would suggest you get some more therapy , grief therapy also because we are grieving who we once were.  The anxiety alone will wreck havoc on your immune system.  Get some meds, and if you are on some now, get a different kind or an increase til this is a memory.  Rather to do all you are doing now, then the trauma of having a recurance.  Just my opinon, from someone who has been there.  Best, Debra(Jo)

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

Thank you all.  I do plan to meet with my gyno/oncologist on Tuesday and get as many "facts" as I can before I make my decision.  One of my problems is sensitivity to medication.  The only kind of anti-depressant that ever worked for me were MAO inhibitors but I was so sensitive to their interaction with food that I ended up in the emergency room twice with a hypertensive crisis.  After the second time, the psychiatrist took them away from me before I stroked out.  

At first I thought it was the oxycotin but I haven't had any for five days and I took very little of it - half pills.  I have talked to my PA and my doctor about alternative meds but they haven't been helpful at all.  I'm taking tylenol for pain - that's it.  If it was only anxiety while I was awake, I think I could deal with it through the cognitive therapy I've had, but ALL this is happening in my subconscious. I'm starting to feel like I did back in 1975-1985 where the sun coming down triggered panic.  I tried everything back then!  I had a light box, tried every anxiety and anti-depressant under the sun and any kind of therapy recommended.  The last psychiatrist I saw said she thought moving would help - to get out of the house where the trama occurred.  My saint of a husband agreed and we started to look for a new house.  I think that was the start of my healing (although the other night, I had a burn dream).

And, after reading all the posts on this board, chemo and radiation are absolutely NO guarantee the cancer won't spread anyway.  

"Following surgery, a decision must be made about the next steps in treatment. The range of choices among current standards is wide, from no further treatment (observation) to radiation and/or chemotherapy. “It’s either nothing or a lot,” explained Karen Lu, M.D., a professor in the Department of Gynecologic Oncology at The University of Texas MD Anderson Cancer Center. The range of options for early-stage UPSC stems from the question: Which patients require substantial adjuvant (postoperative) therapy, and which patients should only be observed?

 

According to Lois Ramondetta, M.D., an associate professor in the Department of Gynecologic Oncology, the wide range of treatment choices is confusing and reflects the relative paucity of data specific to this variant of endometrial cancer."

Even the experts don't know!  Then I look at how other countries view treatment and it's all over the place and their survival rate is the same as ours. 

I have to go in for a blood test tomorrow and let's see how many pokes before they can get a needle in?

Love,

Eldri

NoTimeForCancer's picture
NoTimeForCancer
Posts: 2521
Joined: Mar 2013

Eldri, please call and get some professional help.  This is a chat board and none of us are trained to help you with the things you are going through.  From everything you are saying it is more than what we can help you with and trained professionals can talk with you and get you the medication that can help you best at this time.

Donswife48
Posts: 289
Joined: Nov 2015

Do you think your terrors will stop if you quit chemo, or do you think you will replace them with the other question, will it come back because I stopped.  I really wish I knew the future, because I think you are going to be fine either way.  I know I will have a similar conversation with myself when my chemo ends and talk will turn to radiation.  I believe you are strong, please talk with your doctors and see if they can come up with something that will help.  I've heard there are several alternative chemo agents if your doctor suspects the taxol to be theone causing the terror.  I've also read that people who have an allergic reaction to taxol just go with the one, carbo.  Whatever you do, do it with conviction and a clear heart and mind.  By the way, I was feeling sad yesterday myself, thinking what if the treatment ends up killing me, but I was able to talk myself out of it.  I'm in it for the cure, I don't have the luxury of any scans to show if I still have cancer cells or not.  Hugs Nancy

ConnieSW's picture
ConnieSW
Posts: 1407
Joined: Jun 2012

The one thing I might add to what the others have said is to consider having treatment specifically for PTSD.  With your history, I wonder if that may be the problem instead of the chemo.  If so, I think they've come a long way indealing with it than in the 1970's due to our poor military members.

Also, I've read that some docs recommend 4-6 chemo sessions.  Do you think you could see your way clear to enduring just one more?

 

Please  know I'll be thinking about you. 

Sandy3185's picture
Sandy3185
Posts: 228
Joined: Oct 2013

I am so sorry you are suffering so! I wish I had the words to help you both. Eldri, DebraJo gave you some great suggestions. Please try to remember how many people love you and will be devastated by your loss. My father committed suicide shortly after my husband and I were married in 1969. I still miss him and carry that pain in my heart today. If only he could have been here to know my children and if they could have known him, what a wonderful man he was. Please don't give up! Talk to your oncologist and see if you can stop treatment for a while until your mind is in a better place.  Perhaps he can move your port to a new location and give both sites time to heal. Meanwhile see if you can talk to your psychologist and try to get some relief. God knows the worry, pain and lack of sleep must contribute to your depression. Finding a way to cope with everything that is going on right now is essential. I think you doctor will agree that a short delay in continuing chemo is better than continuing in your present state of mind. My thoughts and prayers are with you.

 

Annabella Rose's picture
Annabella Rose
Posts: 59
Joined: Jan 2015

I felt I couldn't survive the fourth. I have M.S. and M.G. and those two diseases were completely overwhelming. When I told the doctor he said that it was OK for me to stop at three. He said he was happy and surprised I made it to three with dealing with two other health conditions. But he he did talk me into getting 5 internal radiation treatment to make sure nothing starts up at the cuff. Just to be on the safe side. I agreed to it but I still deal with a lot of pain in my pelvic region and inside the vagina. Now this week I find out my Pap smear last month was abnormal and I have to get that checked out on Dec 29th.

All you ladies are So Good to share your story's and encourage us on in making such complicated decisions.

When I asked my Doctor if me stopping at three chemo treatments instead of making it to 4 will increase my percentages in it coming back? He said Only God knows the answer to that. His answer didn't make me feel all warm and fussy but after thinking about it, he's right.

mas910's picture
mas910
Posts: 6
Joined: Mar 2009

Do you think the steriods are adding to your insomnia and nightmares?  That has happened to me in the past.  Also, I would definitely ask to have your old port removed and a new one placed.  You should not have to worry about your veins holding out when you could have a new port.  These side effects of chemo will go away you just have to be patient.  I was first diagnosed 2009 UPSC, had surgery and chemo.  Had several recurrences in February 2014 and have been receiving chemo almost continously since then. So far chemo is keeping things under control, knowing that this is not curable only manageable.   Good luck to you and remember to take one day at a time!

 

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

I agree it's a form of PTSD although back in the 80s it wasn't called that.  It's the psychological after effects of a mental or physical trama and I know, for a fact, they still don't have very effective treatments for it.

I just called my gyno/oncologists office and asked for an extended appointment when I see him on Tuesday to get my port removed or fixed.  I talked to my husband last night and he said he would support whatever I decided.  He knows first hand what I went through those ten years and how history is starting to repeat itself.

Last night was another bad night.  Not so much with night terrors but with repetative anxiety dreams.  When those would happen, I would have to get up and become fully awake to reset my sleep cycle.  I was up for several hours and then tried to go back to sleep.  Eating is still very painful for my digestive tract but I ate something too.  I woke up at 10 and feel like I've been through the ringer.  

I have read everything that's out there about this cancer's treatment I can find so it's not like I'm making this decision without information.  

As far as my first three chemos - the second one was twice as bad as the first and the third one has been twice as bad as the second.  If this progression continues which, a lot of you say it does, and becomes cumulative, stoping now makes sense.  

I am not a nervous or anxious person.  Even the waiting for test, results, doctors' appointments, etc. did not affect my sleep or anxiety levels.  Life is what it is.  The problem is my subconscious.

Well, I'm off to work for the afternoon.  75% of our company's bids for 2016 go out on January 1st so we've been working hard to get them done.  Our son who graduated from college in May is working in the business and has taken over some of my duties while I teach him others.  There has been NO snow so far this year in Green Bay, WI - in the winter our company plows and salts commercial parking lots.  Our snow business last year was dismal too.  But in a way it's nice because my husband doesn't have to be on snow alert tracking the snow and sending out the plows and salt trucks.

Love,

Eldri

 

Editgrl's picture
Editgrl
Posts: 903
Joined: Jun 2015

I can only echo what others have said.  Reach out to your oncologist and therapist.  I am so sorry the chemo has been so hard on you physically and mentally. There are some newer therapies, including EMDR, that are having good results with PTSD.  I hope that you and your oncologist can find some options that will work for you, whether it is delaying or ending chemo, changing meds, or something else entirely.  

Sending healing energy your way to get you through the weekend til your appointment.

Chris

SettledSue's picture
SettledSue
Posts: 55
Joined: May 2012

Your tone sounds much better today. I'm glad you asked for an extended appointment to discuss your options. Is it possible that you could continue your chemo at a lower dose? That's what I did when my neuropathy got worse. My doctor's initial recommendation was for 4-6 chemo treatments. After my fourth I asked if I could stop. He said 6 would be better, so I continued at the lower dose. Good luck to you! Sue

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

I have had to have my dosages lowered several times and the time between extended. Because of the damage it was doing to my blood.  My 2nd go round of 6 treatments was stopped after 5 because my blood was so bad. I was back to NED so I was given a chemo vacation that lasted about 4 months.  There are different kinds of chemo and maybe one of them would work better for you.  Taxol/Carbo. Just seems like it is the one they try 1st for this kind of cancer.

We have lots of snow here and more coming this afternoon and tomorrow.  The snow crews could probably use some extra help.  Head west a couple of states.

Hugs and prayers, Lou Ann

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

My doctor started me on Taxotere/Carboplatin because he said the Taxotere had less side effects and was more easily tolerated.  I'd had to be on the stuff with MORE side effects!!  LOL

Our only chance of snow is like 30% on Christmas Eve.  Just when we don't want to have to go out!!!

Love,

Eldri

oldbeauty
Posts: 180
Joined: May 2012

I don't have any experience with what you describe so I can only add my sadness for what you are going thru and hope you get some relief.  The only other thing that occurs to me is whether you think it might make a difference for you if you were admitted as an inpatient for your remaining treatment(s).  I know I've read that some people do get admitted and I wonder whether given the pain and torment you're going thru not to mention the port problem whether you would be able to weather the storm better in a hospital setting.  oldbeauty

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

I don't know how insurance would view that - LOL!  They seem to fight tooth and nail for everything that's just a little different.  Do they admit you just for the 10 days after chemo or for the full time?

Love,

Eldri

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

I just had a conference call with my doctor and chemo nurse.  My nurse called to tell me my WBC was really low and they were trying to decide what they should do.  I told her about my plan to quit chemo and she said she wanted to see if she could get my doctor on the line because that would make a difference in how they treated this low count.  I told them my reasons and my doctor wanted me to think about it until my appointment on Tuesday when he would meet with me.  He said if I was going to stop, he would remove the infected port.  They thought if I stayed home this weekend away from others they wouldn't give me the neupogen shot.  They want me to rest over the weekend, eat REALLY good and come in Monday morning to get my blood tested again. 

Mentally I'm feeling better than I've felt in a while.  Physically I feel like I've been wrung out and hung up to dry (my grandma would say that - LOL).  If I can just get one night of sleep, it would make all the difference in how I feel physically.

Love,

Eldri

giggs100's picture
giggs100
Posts: 91
Joined: Oct 2015

Eldri have you thought about having a picc put in your arm.  Granted there is some daily maintenance that has to be done with that but it would help with them poking you looking for blood draws or chemo applications.  That is what they did for me when I had a port put in and then had a problem because they didn't stop my blood thinner drug and my port area keep seeping blood the whole day of my first day of chemo. After I had my first chemo application I had to return to the radio..... area for them to reopen my port area and cauterize some of the small blood vessels and add more stitches to the area and from there they went over to my left arm and put a picc in so they could continue with my next two applications of chemo plus be able to draw blood for testing from it.  It was a very long day for me (13 hours) for the first day of chemo.  Maybe something to talk to your doctor about.  My thoughts and prayers are with you that they find a solution for your problems.   It's enough for us to just being able to withstand going through chemo without ending up with all the problems.  

Sending lots of hugs and prayers your way.  Please stay strong.  XOXO

Jerri

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

With my veins being so small they didn't even consider a PICC line.  It usually takes at least two or three tries just to draw blood - one time we were in the teens.  I also develop infection very easily - UTI after my hysterectomy and now the port site.  I don't think he would even try it.  If anything he'd remove this port, clean it out, sew it up and put in a new port on the other side.  

Love,

Eldri

Lou Ann M's picture
Lou Ann M
Posts: 996
Joined: Feb 2015

Happy that mentally you are feeling better.  That is such good news.  Now if you can get the physical side in the same place.  I have never had night terrors.  they must be terrible.  I have had trouble sleeping for a long time. Most of the time I can't turn off my thinker.  Even before cancer, I would lay awake half the night rehashing what ever went on in my classroom the day before.  Since cancer my mind goes over every doctor's appointment and hospital visit I have had in the last 3 years.  Nueropathy never bothered much during the day, but at night my feet burned like a severe sun burn.  Gabapentin and Lorazapan have helped with that, but I think that they may have helped calm me down, because I have been sleeping better.  I have also tried adult color books to relax and am trying to put away my electronics for awhile before bedtime.  Tried sleepy time tea(that stuff isn't for me). Hot cocoa just gives me congestion.  For awhile I tried sleeping in my lazy boy in front of the TV( that actually worked )

  I hope you can find something that will help you get the sleep you so badly need.

Hugs and prayers, Lou Ann

Donswife48
Posts: 289
Joined: Nov 2015

Your sleeping woos sound similar to mine, can't turn off the thinker.  I actually thought when diagnosed with cancer, oh great, now I can think about this for the rest of my life!  My neuropathy pain is now mostly at night, except for the fingertips.  You mentioned your Lazy Boy, I was wondering if sleeping in a recliner would help with the leg pain.  I don't have one, but I'd be game for buying a cheaper brand just to get through chemo and the aftermath.  Last night, I gave in and took a Motrin after I couldn't sleep, it helped, then around midnight, I got up and took a hot shower.  Finally something worked and I slept for 5 hours through.  Sorry Eldri, I'm sure you don't want to read about others being able to sleep when you desperately want some.  I will say, it there is anyway you can get some relief, it will probably do your mental side a great deal of good.

Lisa 00
Posts: 134
Joined: Jul 2009

I figured that calling the chemo what it is here is okay. 

I'm 99% sure that, if you cornered a gynecologic oncologist at the right moment, they would admit that it all is a crap shoot and, really, it's the first 3 chemos that are the most important.  Obviously your quality of life has suffered greatly and your future quality of life (as well as possibly your life) is in danger as well. 

I think you know what you want to do and your husband supports quitting and removing the port.  OH, and the port.  It's infected.  That is another big problem.  Get that freakin' thing out, is what I say.  Your WBC count is already way low, right?  An infected port with a low WBC count would scare the heck out of me. 

Do what your gut tells you to do.  Best of luck, Sweetheart! 

Lisa  

 

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

When I first talked to my chemo nurse this afternoon and told her what I was thinking she said chemotherapy is in its infancy.  I told her we are the guinea pigs and she agreed.  She said sometimes it makes the cancer better, sometimes it doesn't help at all and sometimes the tumors actually grow.  I'm sure 100 years from now, people will look back and be amazed what we were subjected to just like we look back at medicine (remember the x-ray machines at the shoe stores?) and just shake our heads.

For the past 30 years I have slept wonderfully.  I learned so many good sleep techniques during those horrible 10 years.  We have an extremely comfortable bed and have the same mattress at our other house.  I always loved relaxing and drifting off to sleep.  The only thing that kept me from sleeping through the night was my 4:00 a.m. to 5:00 a.m. bathroom trip.  Now I have to talk myself into just going in there.  

I've also developed a rash on both my hands.  I noticed a little area but it's getting bigger and it itches so I put some cortisone cream on it.  My skin is extremely thin and just itching can cause it to bleed in normal times so I have to be careful not to get a skin infection.

Love,

Eldri

Kaleena's picture
Kaleena
Posts: 1910
Joined: Nov 2009

Hi Eldri:

I am so sorry that you are going through all of this.   With regard to your itchy hands, what antibiotic are you taking for your infected port?   After getting my stent replaced the fourth time, I developed an allergic reaction to an antibiotic that they had previous given to me - Ciprofloxin.    My hands and feet itched like crazy.   I was coming out of anesthesia and had kicked my booties off.  I also heard a nurse say that I was getting blochy, but like I said I was still coming out of anesthesia.   

I hope you can get your much need relief and sleep!

My best to you,

 

Kathy

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

I just finished my 7 day regiment on ciprofloxacin so maybe that's why my hands look like this.  There's some red blotcheiness on my face too.  I'll show them it on Tuesday if it's not gone.  I also am quitting the probiotics.  The diarhhea is just too bad.  It just seems like I glue something back on and something else falls off.

Today is a day of rest along with making a few cookies and getting the house ready for company.  Luckily our son is home this weekend since his girlfriend's college roommate is in town from Montana.  He's going to grill me salmon for lunch and make some candy for Christmas.  He doesn't know it but he's also stripping and making up beds with clean sheets.  Just simple everyday work is too much for me right now.

Love,

Eldri

Abbycat2's picture
Abbycat2
Posts: 639
Joined: Feb 2014

and consume good blood boosting food. This is a difficult time of the year to not feel well- and you have certainly had significant health issues. It is traumatic enough to get cancer without the continuous problems you have had to contend with. I just hope that you continue to feel better each day. I believe that getting a cancer diagnosis is a game changer that can certainly lead to PTSD. I suspect I suffer from it but as time goes by I seem to be recovering from the trauma. My motto: "It is what it is" has forced me to accept reality. I try not to live with magical (make believe) thinking- as in how young children and many adults think. What's the point of that?  

Love and good health are my wishes for you!

Cathy

 

EZLiving66's picture
EZLiving66
Posts: 1303
Joined: Oct 2015

That's exactly what I've been doing, Abby.  I've had salmon, chicken, eggs, brocolli, whole wheat bread, almonds, oranges, apple juice today alone.  My taste buds are still off but I just kept chewing away - chew, chew, swallow; chew, chew, swallow.  I don't want to have to get a blood transfusion if I can help it.  Problem is, it goes through me about as fast as I can eat it - LOL.

I agree, I'm not a magical thinker either.  My whole life I've been the practical one.  Always have a Plan B in case Plan A doesn't work and then it doesn't hurt to have a Plan C up your sleeve.  But....getting cancer wasn't in ANY of those plans.  I think of my brother, who at 37, had an MRI because he thought he had damaged his left arm.  It was his heart and within three hours of that MRI, he was dead.  At least I "probably" have more time than that. Cool

Love,

Eldri

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