Talking Frankly about Living with Advanced Cancer

Thank you, @lbern I appreciate this information. My neighbor during the summers was just diagnoses with Stage IV Pancreatic Cancer and your link will help me understand at least a bit of the jargon surrounding it.

Thanks again and get ready to welcome Spring this week!

Colleen, this is my first encounter with Connect. At 61, I have stage IV prostate cancer in the lymph nodes with a small spot on one rib. I just started chemo this past Friday, and it went well, no side effects; however, the Neulasta OnPro device failed /beeped red, so I took it off and called my doctor. He said to stop by the hospital cliinic on Monday morning. Is there someone in Connect who knows what the basic back-up plan is when the device fails? I cannot find any answers online, and all the cancer clinics are closed on the weekend. My doctor said if it is not given within 27 hours of chemo, there is no reason to get the shot. Your thoughts appreciated.

@gingerw I just went on 5 wishes website, the wording of the wishes are direct and meaningful, thank you for sharing it. I am on such a surreal journey, last year at this time I couldn't even imagine that I'd have terminal cancer. I keep changing what I thought about my wishes. Initially I didn't want any pain killer that made me muddled in thinking. Now that the pain's increasing I'm beginning to feel differently. I know I want to minimize the suffering my family feels at watching my decline. I'm not sure really how to do that, I cannot reassure them of anything except my love for them....

@ibern Your family is also going through so many levels of understanding and grief over your condition as it is today and may progress to in the future. Assuring them of your love for them is precious to all. You cannot script for them how to feel. Script only for yourself. Allow two or more important members of your family to understand that your desires may change as your condition changes. This is critical in adjusting things. It's a difficult situation to be in I know. Sending gentle cyber hugs to you today.
Ginger

@fmh1 welcome to Connect. I'm glad you found the community. You may also wish to follow the Prostate Cancer group here: https://connect.mayoclinic.org/group/prostate-cancer/

I can understand you're worried about the Neulasta OnPro not working. You did the right thing by calling your doctor immediately. Your doctor doesn't sound concerned about the delay in dosage. As hard as it may be, try not to worry.

Here's what I understand about white blood cells and chemotherapy. Please keep in mind that I'm NOT a health care professional. Neulasta (pegfilgrastim) is not a chemotherapy drug. It is used to stimulate the growth of "healthy" white blood cells in the bone marrow, once chemotherapy is given. White blood cells help the body to fight infection. Chemotherapy has a cumulative effect. Friday was your first treatment, so your white blood cells may not go very low this round.

Between now and going to clinic on Monday, be sure to wash your hands frequently and avoid infection. When you get to the clinic, be sure to ask questions. When they demonstrate how to use the injector, repeat back to them what they said using your own words. I hope this helps.

Collen, This is my first time on connect. I had prostate surgery on the March 19, 2019. Urologest removed the prostate and lymph nodes. Biopsy shows cancer in lymph nodes and semen vessels. He wants to give me Hormone shot March 27 and radiation later. Any feedback on if this is the normal plan of action to combat prostate cancer.

Hi @9876 and welcome to Connect. I'd like to introduce you to @fmh1, who also recently joined the community and who has prostate cancer that has spread to the lymph nodes. He is having chemo. Everyone's treatment options are tailored for the person. You may wish to read other related discussions here:
- Prostate Cancer: What treatments did you choose after surgery? https://connect.mayoclinic.org/discussion/prostate-cancer-3/
– prostate cancer treatment choices https://connect.mayoclinic.org/discussion/prostate-cancer-treatment-choices/
– Prostate cancer treatment: stereotactic body radiation therapy https://connect.mayoclinic.org/discussion/prostate-cancer-treatment/

@9876, What type of radiation is being suggested?

I will meet with doctor Wednesday and will find out

I will be getting a hormone shot of firmagon tomorrow. At the end of the month I will get Trelstar. Has anyone had this before and how did it work ?

@fmh1, what did you find out on Monday about the Neulasts OnPro? How are you doing?