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Diagnosed with Stage 4 pNET: What should I know?
It turns out that my husband has actually had this since at least 2014 when he had most of his pancreas removed as well as his spleen, due to a tumor. Developed another tumor in his transverse colon which was found in June after rapid weight loss prompted me to push him for a colonoscopy. When the tumor was removed they noticed abnormal spots on his abdominal wall. Fast forward to current day, he has had 2 different scans and it was determined that is has spread to his liver with "too numerous to count" tumors. So he has already had this for almost 9 yrs. He just turned 76 and I don't know what to expect or when. I noticed that he has had frequent memory issues where he was sharp as a tack just 6 or 7 months ago. Now I found out he has "severe Calcification" in 3 places in his heart. He is at a lets see which take me first place, how do I even begin to deal with that. Meanwhile he is worried about me not being able to live without his SS even though I am 22 yrs younger and am still fully employed. Any tips for this caregiver and her husband/patient?
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my husband is on the same treatment and they were going to give him less sandostatin and add another infusion that COULD compromise his bone marrow and put him into lukehmia if his red blood cell count get too low. Its already too low so he didnt wanna gamble. He is also 76 as of this past April. I am fortunate that the only pain he has complained about was shoulder pain but he is tired often. He no longer has the energy to do the things he took pleasure in and when he DOES push himself he pays for it for days.
My heart breaks for you and your husband as we seem to be on a similar path. God bless you and your husband. I pray every night that they find a cure for PNet before its too late but hopefully it will be caught sooner with enough awareness.
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1 ReactionThis all sounds so familiar. His major pain is also in left shoulder. I feel so bad as he also tries to do things and is exhausted and achy for days. We go next week again. The sandostatin helps with the nausea. I know there are so many worse off, it's just I worry about him. Cat scan tomorrow to see how things are since pet scan three months ago. Hope things go well for you and your husband. Let me know if they lower shit and hiw that works.
Hubby and I talked about the new treatment and decided against it because of the possible side effects when the oncologists told us it could cause leukemia we chose to stay the course because he is already severely anemic and this could drop his red blood count lower and if he developed leukemia it was game over quickly. We decided to enjoy what time we had left together without him taking more chances for "rare" side effects considering this cancer alone is rare. I believe my health issues factored into it as I too have had rare issues crop up on multiple occasions. we often joke about of all the rare things we have done, hitting the powerball is not one of them sadly.
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1 ReactionYou have been going through a lot of issues lately and it would be good for you to have some support. Do you have a church family that might be able to offer you some support? If that is not available to you, consider contacting the hospital's social worker where your husband was treated. Social workers are great resources for helping people find support.
Also, on Connect, we do have a Caregiver's Support Group. Here is the link,
https://connect.mayoclinic.org/group/caregivers/
In this group you will find many people like yourself you are caring for spouses who are quite ill. They face many of the same concerns as you.
Will you consider some of these resources?
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1 ReactionCatholics are allowed to be cremated, his ashes can be buried in an urn, there re many less expensive options. As far as finances, are you working with a social worker thru your oncologist. I have been told that the Cancer Society has many resources available to help you. There is also financial help from pharmaceutical companies to pay for their drugs.
Palliative Care or Hospice would be worth looking into, especially since you still work and your husband is alone. I was upset that some friends have distanced themselves once I announced my cancer diagnosis, I never asked for any help from anyone. Check into your Senior Citizens organization in your town for any services they may provide such as Meals on Wheels, there are many volunteer services that could may help you. Local churches may have volunteer services. By networking with different organizations, someone may be able to steer you in the right direction. God bless.
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4 ReactionsTalkativeinfl, first of all, I’m so very sorry to hear about your husband’s situation and your struggles with it. While I have not been in your situation I am a 5 year survivor of NETS (started in the small intestine but wasn’t discovered until 2018 when I had a blockage and I’d been sick since 2007). And I was a therapist for 34 years. This situation you’re in is very challenging. Getting some support for you is very important. Colleen is so right is suggesting you connect with the Caregiver link on Mayo Connect. Also, cancer centers and hospitals usually have in-person support groups. They also have patient navigators and/or medical social workers there to help not only the patient but the family too. And where is your son in all this? Can he be a support for you and your husband? You said your husband is Catholic so is there a priest he would feel comfortable talking to?
I would encourage you to consider finding a grief counselor for yourself. I have a close friend (herself a therapist) who sees a grief counselor twice a month, not because her husband has passed away but because he has dementia and there are multiple challenges dealing with that.
Lastly, while every case is different, these tumors are normally slow growing and while still considered “rare”, they are becoming more common, possibly due to more advanced ways of identifying them which leads to more research on ways to treat them. When I was finally diagnosed in March 2018, I was told it was Stage 4 as I have several small tumors scattered throughout my body (a larger one in my stomach) and here I am over 5 years later, turning 74 soon, and pretty much living a normal life. I have had Lutathera treatment and been on Octreotide shots every 28 days, but so far, so good.
I’m sure you can find help at Mayo in Jacksonville and you’re not far away (I spent my teenage years in Jacksonville). Please take care of yourself. I believe there are answers out there to your questions and concerns. Please check in when you can.
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3 ReactionsSorry to read about your circumstance. My NET is a Insulinoma, pancreas to liver, also too many to remove. Diagnosed last spring and was told by two different hospitals i would be gone by Thanksgiving last year. Third hospital, Dana Farber in Boston started me on chemo immediately for 6 months and reduced the liver tumors from 10 centimeters to 4cm on average.
I’m still here and feeling pretty good.
Your husband has to, HAS TO see an NET doctor that specializes in NET. It almost did me in that the first 2 hospitals were treating me like I had a “regular” pancreatic cancer.
His lack of energy is probably the liver tumors, i had the same problem.
Ask about chemo, it’s not fun but it saved me so far.
Best of luck to you both
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5 ReactionsI’d like support last round suggestions, as my wife also had too many tumors to count on liver, mass on pancreas, surgery wasn’t a option. After 9 months of chemo (pills), Lanreotide injections (still doing), she had 80% reduction in tumors which allowed for surgery and hopefully just a mtn. Issue going forward. Never give up hope, your husband can do this, we got you!
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2 ReactionsI'm on CAP/TEM since March 2023. I'm experiencing the hand/foot side effects. Did she experience this? What is doing for pain & to rest because I can't sleep, any suggestions
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2 ReactionsHave you addressed this with your oncologist/net specialists? When Kim had issues like sores in her mouth from Chemo, our cancer care team was familiar with that and gave her a script that cleared it back up. Ask your team for what you need, not sleeping is not an option. Please let us know how we can help further.
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