Oct 27, 2017 07:52AM 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 29, 2017 11:55AM 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 16, 2017 01:04PM 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 16, 2017 06:43PM 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 28, 2017 01:21PM 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