Mental Health Help and General support.

ajc71

Hi All,

First post!

I was diagnosed with Pancreatic adenocarcinoma Stage 1A - Valentines day 2020, age 48 Male- so I just passed 3 years! I got lucky and had jaundice eventually, the CT scan the prior week missed my tumor. I had 6 rounds of Folforinox, & had a Whipple at AdventHealth Orlando.

I have really bad PTSD, probably like a survivors guilt and have been very negative, aggressive, anxiety and probably a little depression.

I want to hide behind it all, and have been drinking Red wine quite heavily to numb the thoughts, and get some sleep. I take anxiety meds and CREON only (not including all the Iron, Vitamin D, B3, B12 and Thyroid meds).

I was blessed to get a second chance, and really need some help. I have a medical Marijuana card in a Medical Legal state, and that really helps kick start up appetite. I can't use it in the day as I need to function for work and well; function as a non stoner! So I tend to eat late. My diet is mixed, there is absolutely no hunger trigger to my brain otherwise. I easily go 3 days without eating a single thing. I am maintaining weight luckily, but I shouldn't imagine I'm getting the best nutrition these days.

Anybody experienced anything similar? Are there Hospices that offer a stay for a few days, or any that provide mental Health support?

I saw a mental health counsellor for about 6 or 7 visits last year, but I really didn't get much from it, as I don't think the understood the mental strain and anguish living through this terrible disease.

All advice greatly appreciated!

WesternBayFisher

Hi,

I am in a similar position in terms of age and stage but unfortunately had a PDAC relapse about 12 months after my Whipple’s surgery and Folfirinox treatment. As the relapse was in my liver I stopped drinking and have started to be very nice to my liver. It’s kind of crappy advice but I would suggest (i.) being nice to your liver because it is where PDAC likes to go second, and (ii.) having on-going monitoring CT scans as often as possible. We found out the hard way that the blood markers like CEA and CA19-9 can be unreliable.

Similarly, medical marijuana may be is useful for sleep and appetite and helping with neurological stuff during chemo but I have tended to keep away from that because it can be an immunosuppressant which is not so good if you are suitable to go down the immunotherapy route.

I would also suggest (iii.) getting your PDAC screened for MSI/dMMR as soon as possible (preferably at the first biopsy) because if you are one of the lucky few (5%) then immunotherapy may be for you - and it can be a game changer that is way better to factor into your treatment regime than chemo.

Some of the meds I take need to be taken with food so that means I can’t miss meals. I guess if you are not losing weight or condition then you probably don’t have to worry too much about it. It’s the wasting that Cancer does when you are eating normally that is scary.

I have linked up with our local hospice (which unfortunately is on the other side of the world from you) and they are awesome at managing this stuff and do offer short stays and mental health support but your cancer would need to be stage 4 before you could get referred there.

It’s awesome that you are still working. I really enjoyed my last 6 months of work and was genuinely happy to be able to be there.

All the best with your journey and sorry for the crappy advice. Stay positive - PanCan is a **** that can be beaten - and the journey can be fun too as long as you keep laughing and keep smiling!

Cheers

Tim

ajc71

Tim,

Thanks for your thoughtful reply, much appreciated!

I am English but lived in USA since 2005. The medical bills and navigating the hospital systems is a nightmare! My 2020 total medical expense was $700K! Thankfully I have good insurance!

Being America, and how we love paying out the butt for medical expenses, I could find somewhere that will take my money I'm sure!

I am on a medical trial which has been showing good results, I have a blood screening every 2 months that can detect early cancer cells - Signatera Residual Disease test, Have full panel blood work every 3 months and CT scan. I probably glow in the dark from all the radiation! ;-)

I carry the BRCA2 mutated gene, so the cancers are random, my mom had breast cancer, my sister had a hysterectomy last year to minimize her risks, it seems most on my mothers side carry it, direct cousins also. It's a 50/50 apparently if you pass it on, but everyone who has tested on my moms side are BRCA2 also.

I will heed your words on not drinking, I know it's not good! It's just a support but it is becoming habitual! I went to a few AA meetings, but I don't feel I'm an alcoholic, just want to give up for health! I'm not a wake up drink a gallon of Vodka for breakfast drinker, so again I didn't feel part of the system, but it's the best few dollars you will spend on mental health 'Counselling' in front of people that are also hurting for multiple reasons.

Appreciate your time and thanks for messaging!

stevenbcdk

Hi all. I had my whipple in January 2022. After 12 sessions of chemo I’m using creon with every meal because I can no longer digest my food. I’m taking insulin every day because my body can no longer produce it. I still have issues with digestion and fatigue. I have neuropathy to a point I can feel the bottom of my feet. As you I suffer from depression sometimes wishing my cancer would return and let me die. My Ca-19 number is starting to increase but CT scan shows no growth. At 77 I went to work PT due to the economy but I can’t be far from a toilet so I had to quit. I find that smoking cigars relaxes me and helps with depression. Former LE so I find it difficult to use marijuana . I want to say hang in there. We are survivors and each day is a blessing. We will never get beyond “watch and wait”. Take care and enjoy your life as best you can

Codetalker

I'm really sorry for the diagnosis you have to face.

Regarding your question about hospices, some hospices do offer short-term stays for patients who need additional support, including mental health support. However, hospices are generally for end-of-life care, so you may want to look into other options if you're not at that stage yet. There are also palliative care programs that focus on improving the quality of life for patients with serious illnesses, and they can provide a range of services including symptom management, emotional support, and assistance with navigating the healthcare system.

In terms of mental health support, it's important to find a therapist who specializes in working with patients who have cancer or other serious illnesses and will have a better understanding of what you're going through and be able to offer more tailored support. You can also consider joining a support group for cancer patients, either in person or online. Sharing your experiences with others who are going through something similar can be very helpful.

It's good to hear that medical marijuana has been helping with your appetite, but it's important to use it responsibly and in consultation with your healthcare providers. There may also be other medications or supplements that can help with appetite and nutrition.

MrJWhipple

Hi - I am a 53 year old Male that was diagnosed in Jan of 2022 at Stage IIB and had a tumor (adenocarcinoma) that was resectable. I did 8 rounds of FOLFIRINOX and 10 cycles of chemo-radiation and then had the Whipple procedure in July of 2022 at Mass General Hospital in Boston.

Subsequent scans post-Whipple have all been NED.

I experience the survivor’s guilt you reference. I have found two things helpful - (1) talking regularly to a therapist that specifically deals with cancer patients/survivors, and in my case is a cancer survivor themself and (2) using medical cannabis for both appetite and sleep.

I am a big fan of talking with my therapist about these feelings. Given the low survival rates it does lead one into despair. However, the big take away I have is not a “why me” but a “why not me” attitude now and how I can help use my experience to help others going through a similar situation. If I can help inspire or motivate patients or survivors then that helps me as well. I do get triggered by recent news events - like Springer passing away last month, but I try to put it in perspective . Like you I had painless jaundice as my first symptom - that was incredibly lucky for me so that this horrible disease could be caught early. A lot of prayer, positivity and modern medicine did the rest to help get me where I am now.

One of the reasons I joined this network was to find others going through similar situations, as well as trying to help others that are on this same journey, realizing that everyone has a different path/experience.

I quit drinking at the end of 2020, so can’t comment on the red wine, but I can say the cannabis helps to take the edge off just fine for me. And it does help me eat. Like you I can’t be under the influence all day as I need to perform for my job - but I treat it like a social hour benefit. I do about 10-15 mg of gummies every night about 60-90 minutes before dinner time. It ramps up my appetite to help me maintain weight (like you I can go a long time without eating and I do not need or use Creon) and quiets some of my thoughts to allow for a pleasant evening and some good sleep. Downside is I can’t usually stay up past 10 pm now.

Anyways, I hope this helps. Would love to keep in touch.

Jay

stevenbcdk

I thought I was having a reoccurrence of my cancer because my CA-19 had increased to 73 (from 4 right after my surgery). I have had 4 CT scans and they show nothing. Growing. My strength is returning but my stamina isn’t. I was very depressed until my last scan. Don’t know why the CA-19 increase but all is good. I didn’t have to use marijuana and have a good appetite and sleep pretty good. My depression is gone I still ise Creon daily with meals and snacks. I don’t want to go through chemo again so if it comes back. I will just live with it. I’m going to turn 78 on my next birthday. I understand that being 55 mean you should have a lot of years in front of you. So if it comes back you should do something about it. Take care and good luck.

JohnToulupe

I'm really sorry to hear about what you've been going through. Dealing with cancer and its aftermath can be incredibly tough, and it's natural to feel overwhelmed with emotions. It's great that you reached out here for support.

Freebie48

Dear Steven. Totally understand what you’re going through. I was first diagnosed in May 2022 because of an ultrasound I had done for another issue. Completed 10 cycles of Folfirino because 12 was too toxic. Had distal surgery and recovered. Hair grew back, gained weight, felt all over better. Then August 2023 I was diagnosed st 4 with Mets to liver. My onocologist gave me 18 to 24 months without palliative care. Unless one is really lucky, most people don’t make it to 3 yrs with palliative care. Today I’m making the choice to just live my life without chemo and go when my body says it’s ready. I want as normal a life (with hair) as long as I can. Oh, just turned 75 which helped me make decision.

stevenbcdk

Maybe I should go to your doctor. My doctor gave 6 months as of September. Im done. Just going to live the rest of my life doing what I can do. Good luck

amandawil

It's completely understandable to feel the way you do, especially with everything you've been through. Sometimes finding the right therapist can take time, and it's frustrating when you don't feel understood. But don't give up on it completely. There are therapists out there who specialize in helping cancer survivors cope with the emotional aftermath. I also noticed medications for borderline personality disorder https://www.mentalhealth.com/disorder/borderline-personality-disorder-bpd/medication-for-borderline-personality-disorder. While I'm not a medical professional, it's important to discuss any potential treatment options with your healthcare provider. Medication can be a helpful tool in managing symptoms, but it's crucial to work with a professional to find the right approach for you.

5050

https://csn.cancer.org/discussion/comment/1706105#Comment_1706105

I was just diagnosed and very terrified having Whipple procedure on the 14th of November caught an early stages with a 1.9 cm mass at the head of the duct. I was told 20 to 30% survival rate. I'm assuming 5 year study? I believe stage 1 I still haven't absorbed all the information myself. Sounds like I have the same thing you did? So very confused. I Saw your post and it drew me toward you. Don't really know what to say at this time I am a 61-year-old female. I really don't know what to say at this time if you can help with my fears that would be greatly appreciated.

MrJWhipple

https://csn.cancer.org/discussion/comment/1718802#Comment_1718802

Hi - I am so sorry about your diagnosis. It truly is a lot to take in at first. Couple thoughts/questions - did they treat you with chemo first and then the Whipple (called neoadjuvant chemotherapy) or are they going to perform the Whipple and then do chemotherapy (called adjuvant chemotherapy)? Have you looked for a second opinion? Have you had a PET scan done as well (this imaging test uses a special sugar solution to look to see if the cancer is in one place or if it has spread)?

I know it is a difficult and confusing time. I am so sorry. Sorry as well for all the questions as you must feel overwhelmed, I don’t want to add to that. There are a lot of good online resources to read/discuss with your Dr at ProjectPurple.com, letswinPC.com, and PanCan.org. PanCan.org also has a line that you can call to speak with an advisor to help find a National Cancer Center of Excellence in your area if you are in the US.

Don’t focus on the survival rates they tell you. This disease impacts everyone differently. Those statistics include other various aspects (age, health) that don’t translate into a complete “one size fits all.” You are a control group of one. Focus on working with the doctors and how you can make yourself better.

The Whipple is a difficult procedure, can’t sugar coat that. The recovery can be a bit difficult, again, everyone is different. I am sure you will be in excellent hands. I don’t really use this site, so not sure how to have you send me a DM, but please feel free to email me at jay.buth@gmail.com.

I am coming up on my three year anniversary of being diagnosed this January. I take that as a win. My latest scan this last October continued to show no evidence of disease. I am 2 1/2 years post Whipple. I still work (and worked through chemo). I make it a focus every day to treat it with gratitude. As wel, I try to make the world a brighter place for all I come in contact with. Spread joy!

I do think, which is common - unlike anything else with this horrible disease - is the appreciation for life. You need to live it, don’t retreat because of this. With therapy, post treatment, I am thriving and embracing things now. It continues to be a strange journey. But one that I am happy to be a part of.

Not sure if this helps. I will keep you and your family in my thoughts (especially on the 14th). I wish you all the best as you navigate through this new world. Peace be with you.

5050

Got on the 20th of October having a MRI to see if my kidney cancer came back I'm cancer-free there. That is when they found the mass had my biopsy Whipple procedure was booked first. Have not had pet scan. Having surgery at UVA medical center in Charlottesville Virginia. Chemo will follow after that not sure how long though after the surgery. Thank you for your reply back and appreciate you thinking about my family and myself on the 14th.