Topic: Pre-existing mental illness now w/cancer

Feb 24, 2014 10:17AM farmerlucy wrote:

Sorry Peggy -  I don't know why life has to be so hard sometimes. Crossing my fingers that everything checks out A-ok at the last two docs. Rest today, get some good sleep tonight, tomorrow regroup and put one foot in front of the other. Gentle hug.  We're here for you.

Feb 25, 2014 02:41AM PeggySull wrote:

Farmer Lucy and SlowDeep,

Thank you for your kind words and thoughts.  Things will settle down I hope as the week wears on.  If I could get some good sleep...

Hope you two and the rest who are struggling are doing okay today.  

Hugs,

Peggy

Oct 6, 2017 07:07PM Faithonfire wrote:

Hi peggy I am new too and I have had ptsd for over a decade now and just got diagnosed with stage 3 braca 2 invasive ductal carcinoma in june.

I understand how hard it is to have a thin grip on life before such a whopper of a diagnosis, doing therapy for a serious condition already then getting a diagnosis that changes your entire routine dropped on your head without warning!

I keep you all in my prayers and look forward to sharing some tips and laughs along our sea of tears in this long journey.

I was lucky enough to have my ptsd therapy in place before my diagnosis, years of cognitive behavioral therapy allowed me the ability to manage my symptoms one at a time as I receive treatments. They actually have cognitive processing therapy for chemo patients to aid stability with side effects setting off symptoms of other diagnosis. This kept me sane and helped manage each issue more effectively without the feelings of loss of complete control.

It's all about the little victories we find each day that keep one foot in front of the other, and I consider finding your topic here one of mine today! Thank you all for making me feel that my past struggles might make someone else's path a little easier. I've suffered enough for everyone believe me

Oct 10, 2017 05:55PM Faithonfire wrote:

Nice to meet you too

I just threw a shot out in the dark seeing if anyone would need or like to know that there are options available with long term diagnosis such as ours during times of systemic interruptions like chemo treatments or pregnancy that temporarily make conventional medications a less viable option vs risks that might not be properly understood as it pertains to the total health and quality of life issues that factor in to the informed decision making process.

I am very proud of you for your great achievements in aa that well surpass my own at the moment. I had 10 months alcohol free before I was diagnosed but chose not to do aa because I was working my cbt therapy at the time and had enough skills to keep me as out patient and continue the brutal chemotherapy prep diagnostics biopsies and every horrible medical test needed in record time!

This is not my first setback but what I learned in aa previously helped me to have an emergency plan in place to seek treatment and have my husband take care of our three teenagers and their busy schedules while I adjust to the medication changes and minimize the trauma as much as I can in the face of full symptoms flare ups.

It is hands down the hardest thing I have ever had to do, and right now they all feel as if I have abandoned them no matter how I try to explain it to them.

We all need to allow ourselves to ask for and receive the help we need to stay as stable as we can in light of our circumstances pre and post diagnosis and what kind of plans we can arrange just in case. I have always prepared for the worst and hope for the best but I'm no fool and the worst enemy to my success is me. Knowing better means we can do better. For me those were some hard lessons learned and I hope I can spare anyone my pain level with what I can do now that I wish I had known sooner.

I have to get up early for my surgery meeting before chemo treatment so I will be a wreck for the next few days and already have my therapy the next day, every time.

It really helps me to know we are not alone in this journey no matter what anyone we love may say or do to ignite an already critical moment. For me, the hardest person I ever had to forgive was and still is myself.

Best wishes and best of luck to you, I will check back as soon as I'm strong enough to

Oct 26, 2017 05:24PM auroaya wrote:

Hello Fusban I hope I can be of some help but first two clarifications: I have bipolar disorder also known as maniac-depression Was dx before breast cancer. Don’t know what the II mean after bipolar I was never given a stage or anything like that. I also not familiar with Lupton.

So if we do have the same ailment the only bad interaction I ever found between my bipolar meds and cancer meds is that I was taken the antidepressant Prozac and that was contraindicated. My psychiatrist switched me to Cymbalta 60 mg and everything is ok. In fact Cymbalta also helps with the hot flashes and the joint pains from taking the anti-hormone Cancer meds.

I’m currently taking for bipolar: Cymbalta 60mg once a day; Divalproex 500mg ER and Risperidone 2mg. Risperidone also has an interaction but I forget which.

I’m currently getting IVchemo Abraxane and don’t have any side effects. As a matter of fact I think my Psych meds help with the cancer’s side effects. When I was dx with the cancer my Psychiatrist increased the dosage of the Cymbalta from 30mg to 60mg and the Risperidone from 1mg to 2mg.

In my experience the psych meds do not interfere with the cancer treatment.

There are a couple of good sites in the web which let you run your meds for interactions.

Good luck if you have more questions pm me.

Aurora

Oct 28, 2017 03:52AM Faithonfire wrote:

hi, I am still kicking after treatment 10 of 16, but have had a few setbacks that really knocked me down and it's been hard to cope with it all.

I had a bad reaction to Benadryl with my taxol treatment that I had to endure for 3 weeks because of the respiratory risk with the drug. During this time I picked up a cold and despite clearing 2 chest X-rays and not missing a single treatment but I bruised my ribs on my left side from coughing!

I was adamant before we started my treatments that we avoid as many narcotics as possible because I was concerned about side effects and dependence being much greater for me living with ptsd during this health crisis.

After every alternative failed, I had to use narco 5 mg and 325 acetaminophen to maintain self care. After about a week the pain level continues to get worse and the narco does nothing to improve my quality of life at all now.

I have found that sea salt baths are most helpful and aromatherapy helps me stay calm as I pray for help and patience to make it through my endless days of therapy.

My therapist is very concerned that the recent opioid crisis is greatly changing how cancer pain is being handled and treated by doctors.

Having a ptsd diagnosis to start off my stage 3 breast cancer left me trusting on blind faith that all my hard work for years of documented therapy and medical records to confirm my repeated denial of narcotics for other medical options would be taken seriously and I would not be denied pain relief if I said it was too much to handle with any other alternative.

Last week I was, and with tears in my mothers eyes we sat together bewildered at the response we got after I was cleared for treatment. If my blood tests still look as good as they tell us, how can I be falling apart physically and emotionally this severe?

I am reporting my side effects and clearly showing my entire prescription history of every dose and duration to every specialty team I work with and I cannot help but to feel punished for being transparent and asking for help with severe breakthrough pain.

I have never displayed any drug seeking behavior despite multiple surgeries and trauma injuries in my medical history, and I was left feeling like a junky begging for relief because every last non narcotic option had been tried and failed to control my pain so I could even care for myself.

I felt ashamed that I could not just "suck it up" or that my ptsd was not even considered in the decision of how to address my pain and fear during treatment.

My therapist and I agree that I am not asking for anything unreasonable and the manner that my request was handled brings to sharp focus the need for sensitivity training in the medical community for mental health rights and patients with combined chronic diagnosis having treatments that disrupt prior mental health treatments already being used at the time of additional diagnosis to be treated for the entire prognosis simultaneously.

This issue is very personal for me, I am a very strong advocate for mental health and very dedicated to making this an opportunity to start some important discussions about the critical issue of how to handle being put in severe pain after being told you cannot have relief provided by the very doctor that promised to protect you from that breaking point.

After all the pain fear shame and guilt I have had to endure in my life, nothing broke me more than being made to feel that for being honest about what I am feeling and asking my doctor that I trusted to save my life for help and being denied without explanation or a word face to face.

It's very fortunate that I have a great therapist to help me through this crisis, but I felt this was important enough to share with you all so together we can change the standard of care for anyone who feels that they are not receiving the quality of care they deserve because of combined diagnosis.

I will try to stay strong and let you all know how surgery goes once I find the right team of doctors to use for my double mastectomy and reconstruction but after my first appointment went so awful I can hardly bring myself to think about that yet.

I don't have the strength to tell that tale now, and until I find any good from it to share I will keep it to myself and pray nobody ever has to be made to feel the way I was by being given incorrect information in such a manner by a doctor claiming to have had breast cancer

Oct 30, 2017 07:55AM Faithonfire wrote:

thanks so much for all the hugs and encouragement! I am still fighting the good fight and my therapist completely supports me in my struggle to keep the medication to a minimum without compromising the quality of care I receive.

I had 10 months alcohol free before I was diagnosed without aa so I am sure it won't be a problem to handle the pain medication after surgery with a plan in place now to address it as well as the shifting industry standards on pain management in general and how to ensure doctors are held accountable for their decisions on drug choices in a more public manner for transparency in treatment for each patient!

I hate to be turned in to a tattle tale this way, but if a stage 3 cancer patient with complications does not deserve pain medication to treat the side effects of chemotherapy drugs they are all too happy to give me then who does?!?!

Those are the questions nobody wants to answer, and that's the real problem driving the national crisis of addiction that puts the blame squarely where it belongs! It is not my fault I need them, because I didn't need any until treatment started and not being treated at all is not an option I will survive!

Being expected to just suck it up and accept no explanation why is a level of disrespect all too common in doctors that WILL no longer be tolerated in any professional setting.

As a parent I feel active shaming would be most effective for social enforcement of morality in a field so painfully devoid of personal accountability for their direct effect on people's lives. The letters md after a name are just a description of job skill, and makes no person above reproach for their personal or professional behavior.

TIme we make that reality as painful as the conditions that demand their care

Nov 17, 2017 10:04AM Tigger51 wrote:

Hi

I am in the beginning of this difficult journey with preexisting bipolar and now stage 1 breast cancer. I am petrified beyond belief to even try hormonal treatment of any kind. Only my psychiatrist has any understanding of my immobilizing fear. I. Have scoured the Internet for any information regarding hormone treatment and bipolar to only find two articles and a psychiatric oncologist who told me we have lots of meds to control symptoms. I am on five meds already to control my bipolar. HELP

Nov 17, 2017 03:43PM Faithonfire wrote:

hi tigger,

so sorry you are joining us on this long road but I hope a few things I have learned so far might help a little.

I had ptsd for at least a decade before stage 3c breast cancer and had been completely medication free for years using only cognitive behavior therapy for symptoms before my diagnosis.

Needless to say the combined diagnosis left me in a position where that was no longer a viable option for me and some of the side effects of the nessicary medication during chemotherapy like taxol or steroids made my symptoms infinitely worse on top of new awful things I have never experienced.

I found it critical to have a great therapist see me every week to help me keep it together and stay positive in a way no family or friends can. He helped me understand what is happening to my body and mind at the same time as we make sure the treatment plan and goals are followed by the entire cancer team.

That little ace in the hole is invaluable when challenging treatment decisions and advocating for the best care possible. It gives me the strength to focus on healing myself.

I hope you find everything you need to aid you in your treatment and healing also, I'm happy to answer any questions you think of about new options I have had experience with.

Nov 29, 2017 10:21AM auroaya wrote:

Hi blooming I have BPD and I’m takin 500mg of depakote for mood swings I’m also taking 60mg Cymbalta for depression and join pain and risperidone 2mg it has kept me stable during my 4 years as a stage IV breast cancer patient the only difference is I went to my psychiatrist and he switched me from Prozac which had contraindications to the Al I was taking and he switched me to Cymbalta first 30 mg and upon further examination raised to 60mg that was 4 years ago and everything good. I suggest you contact your psychiatrist before starting Al I too am overweight and the Als did made me rounder around the middle but that is a se that many patients get with or without psych problems. Having a good psychiatrist and counselor that are well versed in breast cancer would be great.

If I was you I wouldn’t worry too much right now the important thing is to bring the tumors down and the cancer cells out of the way. If you have any questions you can PM.

Others may be able to help you.

Aurora

Dec 2, 2017 08:35PM Faithonfire wrote:

I apologize if that last post was a little too intense and upset anyone now that I have my meds under control I can function a little better.

I am so terrified of having surgery it's hard for me to trust anyone with my unconscious body. I was fortunate enough to be awake for my last 3 surgeries with the birth of my children so to know I will be alone and have nobody watching over me during my double mastectomy and reconstruction is almost more than I can bear.

I actually had to update my living will to amend the demand they save my sons life instead of mine if anything goes wrong in surgery and that was 12 years ago, ha!

I am small stature now, and after topping out at 240 before birth with my son I was 105 when I was diagnosed in June. I didn't try to loose weight at all I had a 22 cm hole in my abdomen that was fixed under my c section scar the same day and we both made it off the table Alive so job well done by all!

The fact that I didnt breastfeed him was unavoidable and I was told to bind off and got several calcifications and had then tested repeatedly all benign and considered nothing more than cosmetic damage as industry standard of care dictated at the time.

If only we knew THEN what we do NOW right? Fat lot of good that does me now, but I made sure it won't happen to anyone else in my family. I am braca 2 like my mom and the insurance company that refused to pay for my mothers test 3 years ago just covered 5 more tests now and my children whenever they ask for it.

I thought it was fair, I'm not looking for anything we didn't deserve sooner. I don't want money, only to keep my family and the rest of the planet safe from the outdated industry standard of care I was forced to endure out of greed and intentional ignorance.

It's a good start anyway, and i finish chemotherapy December 5 yay!! I just can't wait for that!!! I will feel a lot better about having to do the surgery next when I start healing!

I keep you all in my prayers and will be back to share my celebration soon and no more negativity I promise

Dec 15, 2017 01:03AM Faithonfire wrote:

I am SO excited to FINALLY have some great news to share with you all!

I finished chemo on the 5 th, last Tuesday and this week got to go in for final blood tests and a good show of complete palatable mass reduction!! Can't feel any tumors now just pins where they WERE!!! I might loose less than 5 lymph nodes on my left but won't know for sure until they see it in surgery.

A 98% clearance rate or higher makes radiation therapy unnessicary for me so fingers crossed everyone because we won't know that until after surgery and everything is measured.

I was also told not to be surprised at the numbers if they show the tumor is bigger than initial measurement because sometimes as they deflate the sack containing them squishes around the muscle that hid them initially in my case. So a 4 cm tumor might come out as 6 cm but only empty and flat tissue instead of lemon size in diameter. That does not mean treatment wasn't a success but makes it a little harder to understand.

Trust me it was the funniest thing for me to watch them REALLY try to stick their hand through my chest in my armpit and feel only the pin like I did, it is kind of like hide and seek with all my extra empty skin in my breasts but no denying the amazing results!!!

I was blessed to be matched up with a fantastic reconstruction surgeon that isn't thrilled with my physical condition but now is convinced I can handle anything she needs to do or decide on the fly based on what she sees in surgery. We are both realistic about the options I qualify for as well as what options are left if we are faced with the worst case scenario. I found this approach very comforting and helped me make informed decisions in advance just in case so we can all walk in to surgery confident and safer than I have ever felt about having ANY surgery before.

My biggest challenge is to gain as much weight as possible to give her more to work with!! I weighed in yesterday at 126 so I'm hoping for at least 15 more to use for filling in around the spacers but no idea what size I will be after, skin saved will dictate that but reality says it will be around a c like before I had kids.

I can finally be stress free about the rest of my treatment so I can heal as fast as possible!

my family situation has not improved I am sad to say, but my kids will understand one day why I had to leave to attain the proper care in time to save my life.

That will be little comfort to me when I can't see or hug them for the holidays and my birthday this year, but I am hoping for at least a phone call that's not them cursing at me even if they won't sing to me like we used to.

That's the result of trusting my husband to take care of them when I got too sick to care for ALL of them. I am viewed as a horrible wife and mother because I got sick and could not attain proper care in my state that was totally bereft of funding for mental health resources of ANY kind.

I'll show them who deserves their hatred for that, as well as social justice for believing they would escape jail time for theft of state funding for mental health programs that never exsisted!!

I can't think of any other way to institute real change in healthcare or politics without having to stand up and tell my story once I am strong enough. I never would have been able to do that before watching all of you be so brave and supportive and encouraging me to stay strong throughout the worst health crisis I have ever faced. Bless you all and Happy Holidays

Jan 23, 2018 12:43PM Krispiemae wrote:

I guess I should add I'm bipolar II with anxiety issues and panic attacks. Before dx I was relatively stable in my meds. I take buspar, trazadone, welbutrin, and xanax.

Jan 23, 2018 05:02PM Faithonfire wrote:

oh, stupid chemo brain is still getting me after a month free of it now grrr!

I just had my bilateral reconstruction done on the 9 th of January, and get my final reports this Thursday yay!

I had a skin saving nipple sparing operation after 16 rounds of chemo so they took 3 out of 5 sentynl lymph nodes and it was totally clear in all sections meaning we got full response from chemo on that side and margins were good enough to use my own skin and remove entire organ structures inside for pathology to map progression and all that.

My operation was about 8 hrs under total and expanders in over pec muscles under my own skin with 4 drains total and nipple tissue grafted just above c-section scars is taking well and will be put back in place with 2nd surgery perminant implants swapped out for these uncomfortable expanders!

I was taking morphine 15mg every 4 hrs for breakthrough pain and 5% lydocane patches to put under my boob on ribs before surgery and before that I was an aleve fan. Nanoproxin worked well for general pain like tooth pain but I had to give it up while I am on heavy stuff.

I'm only 42 but a true genetic mutant they can't explain and a complex medical case so we tend to stick to older drugs that tend to work better for me.

Fentynl is the latest and greatest used today but people like me stay awake and curse enough to make a sailor blush I was told but have no memory of my power port surgery!

We went with dilaudid instead and it works like a charm! Took less but needed it more often to stay ahead of post surgery pain on top of being bound with 4 tubes stitched in place! That was fine until the 3rd day when wrap slipped pinning my tubes yanking on stitches so I went in and had 2 drains out and upped my pain medication to 30fast morphine and 30 extended release to prevent pain spikes. I also use Valium as a muscle relaxer and it combines well with minimal side effects for me. I was only 120 lbs at surgery so I am doing my best to gain weight but it's tough to keep any weight on with all the stress wearing me down.

Marinol has been upped to 5 mg twice a day but their diluted versions not much help compared to the plant itself or edibles! It's just hard to talk about at all without fear of persecution for it!

I managed my ptsd before with mostly cognitive behavior therapy techniques that turned out to be critical life skills to keep me together through some of my worst days! I had my card application in my own state stall to this day despite my condition finally being added to approved diagnosis as I get treated for cancer! I just can't wait for permission when it's my right to NOT suffer until its settele

Jan 24, 2018 02:27AM Faithonfire wrote:

Hi meow13,

Yeah I got pretty luckyto not have any more problems after I hit full break down and got a cough I just couldn't shake but being a smoker for over 2 decades gave my doctor the false impression that a little tough love would get HER point across and continued my chemo on schedule every week as I got worse! It was not usual for me in any way despite my dirty habit!

My mom took her aside and scolded her for never treating HER that way about her pain when she was her patient! She was ready to cry when Mom came out of the room to hug me it was funny eventually!

It was the hospital and er staff that were so furious at how far I was being pushed on my pain that FINALLY got me setteled with pain management and realistic levels prescribed by hospital until palliative care took over on my 14th chemo treatment!

Turns out my oncologist was "uncomfortable" prescribing that level of pain relief (ANY!!) yet had no problems with pushing maximum doses of poison that by DEFINITION CAUSE extreme pain to patients taking it!!

My mom gave her a true perspective on my pain through her eyes taking care of me and seeing me suffer needlessly that way was shameful! My therapist and anyone treating me agreed and sent their opinion to the state medical board too!

I was never in my LIFE suicidal in ANY way before about my 11th chemo treatment. The pain was so bad and side effects so severe that I was ready to stop treatments completely and enjoy whatever time I had left which would have been about 2 years at that rate back home with my kids and husband!

My therapist was VERY concerned and got involved quickly after I told him what she said about being uncomfortable giving ANY prescription pain meds! I used aleve until it would not work at max dose allowed. She just got an instant audit of her drug history and a nice big kick in the pants for bullying patients in pain! If they also have ptsd and in a family medical crisis, a lecture instead of pain relief can be just as fatal as any overdose!

I come out swinging at anyone who dares deny my pain because I spent WAY too many years as a trusting patient in pain and shamed whenever I demanded relief