Mayo Clinic Connect
I just feel like it would benefit me if I had someone to talk to about the ups and downs of taking care of my husband.
I am just getting ready to take my afternoon nap; however, I will be most happy to give you information that I have personally researched and studied since mine was diagnosed in 2009. Some treatments, adverse affects, mestasations and being put into Hospice two months ago. It’s 3:15 pm. central time zone now–I’ll contact you a little later–Kay Kramer
Liked by Alyse Brunella
@besrus5 Welcome to Mayo Connect! I’m so sorry to hear of your husband’s health problems, but it is so wonderful that you are there for him and eager to learn about his condition and support him. You will find a lot of support here at Mayo Connect. While I have never been diagnosed with pancreatic cancer, I’ve had a rare form of cancer, neuroendocrine tumors, also called carcinoid. This year I had my third occurrence so I have some sense of the difficulty cancer patients and their families face. If you feel comfortable sharing your husband’s story of diagnosis, symptoms and treatments, please do so. We would like to get to know you better. Best wishes to you and your husband!
besrus5–Well, cancer comes in many types and forms. Insofar as Pancreatic Cancer and the one you posted, there are likely a few differences. First, after a follow up for my BPH surgery in 2009, My Urologist said “we aren’t going any further until after you’ve had a CT scan at North Memorial Hospital.” The next day a call from my Primary Care doctor said “it looks like you might have cancer and I’d suggest an Endoscopy to validate the type of cancer and any malignincy.” Two days later the Endoscopy showed (1) it was the part of which are responsible for the operation and control of The Isles of Langerhorns which controls your bodies enzymes (basically for digestion and (2)Hormones which affect the Thyroid function, etc.
The next point we had to discuss, a close friend, myself and the Oncologist was “what form of treatment were we going to pursue?” With my blood Baseline, pharmacological history due to epilepsy all my life and the size of the growth when diagnosed; we decided to go with 28 radiation treatments which guideways were pin pointed on my chest with 3 dye pins that would guide the rays toward the tumors hopeful destruction. The baseline and other tests didn’t show improvement–so another decision had to be made. Which type of chemotherapy would be the strongest, but least harmful to my system? Especially after a life on ani-seizure medicines for epilepsy.
It was determined that Adriamyacin and Streptozocin would be the most logical. Even at that time, I was told “you can have possible adverse affects to your heart operation at about 5 years later. Instead, my Kidneys went from normal to Stage 3 Chronic Kidney Disease, due to the toxcity of the chemo. At that point, I started watching my diet more closely.
The next step was continued Chemo treatment with Targeted Chemo, which went toward the tumor cells itself rather than whole body. 12 cycles of Sutent pills=1 Capsule a day for 30 days–times the 12 months. Then last, came Affinitor, another Targeted Chemo capsule 30 days for 3 months. Sandostatin was thought to be our last hope, since it was often able to shrink the growth size of these tumors. I quit after 2 shots, because I wasn’t about to spend 24 hours in the bathroom each time, nor did I want to be taking diahreals.
Throughout this period of time, I was advised by Oncologist, Dietician and staff; snack instaed of eat your meals so as to avoid constipation. Then my weight started going down, from a loss of 30 lbs. in 3 moths without trying. I also lost 2 1/2 inches around the waist. Finally, two months ago I signed a Palliative Care form with my Oncologist, which lead to my placement in Pancreatic Cancer Hospice.
Here, there is no more treatment, but only the desire to enjoy The Quality of Life during this end of life stage. The other factor in changing this was first (it was the Islet Cell of the Pancreas. Next, that mestasized to a solid liver growth and 2 uptake areas. Then uptake area’s were seen in the Spleen, in the GI and GU tracts. That was where my status was changed to Pancreatic Cancer. Since it was outside of its original area and as my Oncologis said “being in the liver meant it was now in my blood.”
It’s hard to go much farther than that due to the differences in our bodies systems and function. I know that I need a lot more sleep,naps, and have less energy. I’m 77 1/2 years old and seek to enjoy each day the best I can..
Liked by Dawn, Volunteer Mentor
Hello @besrus5. I am sorry to read of your husband’s diagnosis and send my best wishes and strength to him and to you in your caregiving role. I am Scott and while I have not had cancer, I was my wife’s primary, 24/7, caregiver during her 14 year battle with brain cancer. I believe you have made a very important decision here. While each person’s journey fighting cancer is unique and consequently so is each caregiver’s, I will say one of my most significant challenges was the isolation caregiving can bring with it. Therefore your reaching out here can provide an oasis of sorts for you to communicate, question, learn, socialize, etc. You can feel a part of something outside of your caregiving role, which can be a benefit, a relief, and at times simply a bit of a personal diversion. I wish you the best in your role and am comfortable answering any questions you might have about caregiving if I can. Peace!
Liked by Dawn, Volunteer Mentor, Teresa, Volunteer Mentor, scwgal, Jen
Very good advice.
Liked by Scott, Volunteer Mentor
Welcome to Connect @besrus5.
I moved your message to the Cancer group https://connect.mayoclinic.org/group/cancer/ so that you can connect with other caregivers who are caring for a family member living with cancer. I’m so glad that you’ve already connected with @IndianaScott, @hopeful33250 and others. Please also meet @burrkay @bbams @soul @mamab1223 @alicep @js119 and @dawn_giacabazi to name a few.
Cancer affects not only the patient, but their entire network. Mayo Clinic Connect is a place where caregivers can meet others and talk openly and frankly about the ups and downs of sharing the cancer journey. If fact, @IndianaScott has suggested that we open a group on Connect specifically dedicated to caregivers. What do you guys think?
@besrus5 I’d love to get to know a bit more about you. In your days dedicated to caregiving, which can be so all consuming, do you take moments for yourself? A walk, a cup of tea, meet with a friend?
Liked by Dawn, Volunteer Mentor, Teresa, Volunteer Mentor
@besrus5 From my experience with my mother passing away from stage 4 GBM . It is so incredibly difficult and frustrating take on the role of a caregiver, nurse, doctor and lastly her daughter. Learning to balance the roles can be both painful and difficult for everyone. We would love to hear how you are doing and how we may help.
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@colleenyoung I agree that a Caregivers’ group would be a great addition to Mayo Connect! Great idea @IndianaScott!
Yep, that would be a great idea! I know as my wife’s caregiver I often wonder what others are going through! I do an inordinate amount of research about my wife’s disease, and would love to know if others do the same for example.
Liked by Colleen Young, Connect Director, Scott, Volunteer Mentor, Dawn, Volunteer Mentor
Hello @burrkay! As my wife’s caregiver, I, too, read whatever I could find about her disease. She preferred not to, so I was able to provide her with a lot of information in a format much more palatable for her. I wish you all the best in your role.
Liked by Colleen Young, Connect Director
Kay, I am listening to your post. I know the end is coming for my husband as well. 3 months ago he was given a year. The first couple months we did lots to prepare. He is a true farmer though and all he wants to do now is get ready for harvest ; which I get. I tell my husband this at least once a month: Don’t leave this earth with any regrets.
Kay I hope you can rest comfortably in your final days and think of nothing but family friends and faith and have no regrets.
This is all in the beginning stages (I think) We are three months in. I am a teacher and have taken time off to stay with my husband and be with him when he needs me (which is all the time LOL) Of course at the beginning there is a surprise around every corner. I ‘m hoping we will get to a place where it all levels out.
Hi @burrkay. I do the same exact thing. He doesn’t want to know as much as I do I think. I’m also the one always calling the docs to let them know symptoms, side effects, ask questions, etc because he doesn’t want to bother anyone in between appointments. And I’m the one asking all the questions at the appointments and taking all the notes. I thought I was being super neurotic at first (husband was diagnosed in January CRC stage IV) but then I became friends with 2 other caregivers and they do the same things.
Hi bbams It sounds like you do exactly what I do as a caregiver. I have taken a leave of absence at work. May I ask you what is CRC?
Also, I live in Cambridge Illinois my husband is a farmer and we have been married 29 years.
Oh, sorry about that. Colorectal Cancer. I actually lost my job 2 months ago and am casually looking so kind of leave of absence too (first job I’ve ever lost in my entire life!). Caregiving sometimes feels like a full time job, doesn’t it? I’m looking for remote work now so I can be home with my husband. We’ve been married for 5 months, been together for 5 years but we were engaged when he got diagnosed in January.
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