Fatigue, pain - Lynparza currently

Yes, that is concerning. I wish I had a solution for you. I know how difficult it is to watch someone in this much pain and discomfort.

Andrew

Sorry Debbie, like the others, wish there was a reasonable solution. Lets hope the Lynparza works, i would think with the BRCA2 gene there would be a good chance.
Have you talked with the Dr about lowering the dosage? I know that is sometimes done when SE's are too tough

I went on ClinicalTrials.gov and looked up a newer drug lu-177 which seems to help with bone met pain. One trial reported In those with bone pain, it was reduced partially or completely in 58%. There may be other drugs also?

Below is a link to the site and looks like some trials in CA. and NY. These are difficult to get into. Look for the trials that say "recruiting". Read through and see if they meet your needs and then you will need your Doctor to champion your case to them. They are trials so there are no guarantees... etc. Other search words may yield different list of trials.. etc.

https://clinicaltrials.gov/ct2/results?cond=prostate+cancer&term=lutetium-177&cntry=us&state=&city=&dist=

You could also look into External radiation therapy which can relieve bone pain.
See more options below.

https://www.cancer.org/cancer/prostate-cancer/treating/treating-pain.html

I can relate to the fatigue and pain. I have much of the same. For the pain I suggest a fentanyl patch. A small dose will help pain relief on a steady basis with fewer spikes in intensity. You can always add the marijuana or additional opioids like dilautud for breakthrough pain. In addition, can he tolerate ice packs? Get some decent ice packs to have on hand. I always say my Mets pain is something that gets really hot. An ice pack can cool down the fire a bit. I know when my pain goes unchecked it grows until my entire body aches. As your husband probably knows, years of these cancer treatments break down your body. They make muscles, joints and bones ache. I deal with all of this on a daily basis. I have even recently developed avascular necrosis as a result. Anyway, I go to bed with an Ice pack or 2 every night. I put it under a pillow so it stays cold and I pull it out and place it directly on my Mets areas for a few minutes then put it back under the pillow. I have found it helps to cool down the pain and also works for hot flashes or when my pain makes my entire body hot.

For the fatigue, try eating more protein from easy accessible sources. Yogurt, cashews, other nuts, beef stick, boiled eggs, cheese, etc.. Biotin can add some energy to your day as well. Talk to the doc to see if Ritalin or Wellbutrin in the morning could be prescribed.

Gunner

Dear DebbieMH,

I always follow your posts and updates. You have the care, concern, and support of all of us here.

I am mindful of you and your husband.

I hope you can continue to find effective treatments, as well as ways to manage pain and discomfort.

You might want to enlist the expertise of a pain management specialist, as well as a nutritionist, to address the weight loss.

Meanwhile, we are here to support you and your husband. Keep us posted.

Sending support, concern, and caring thoughts,
Cyclone --- Iowa State University

Hello DebbieMH,

Have thought of you and your husband, since reading your last post some months ago.

It was winter then, with snow on the ground ...

Just wanted to check in, send some support, and let you know you have others thinking of you.

Stay strong, one day at a time ---- you've got a circle of comrades here ---
CYCLONE - # Iowa State University

Wishing you the absolute best and hoping that you get to see your Hubby today. I'm sure that will be a happy time for both!

Larry

Got to spend the day with hubby yesterday. He slept 99% of the time, but I just rubbed his legs and held his hand. Once he woke up and said "oh .... I thought it was a nurse holding my hand" .... I told him I didn't want any nurses holding his hand ...ha-ha .... he went back to sleep. They have him on a machine that is one step down from a ventilator and pumping mega antibotics and blood thinners into him. Not sure if the Lynparza also helped giving him a pulminary embolism ... or just the surgery ... or just the cancer ....or not being able to move. Probably all of them combined. He hasn't eaten since last Wednesday ... hoping today is better. I'm off to the hospital.... Prayers, please.

It's like "whack a mole" .... his body did a major immune response to the Heprin (blood thinner) and destroyed platates. He had to have two platelet infusions yesterday. We did get him up sitting in a chair for about 30 minutes, he couldn't catch his breath with us trying to get him back in the bed. Still on lots of oxygen. On the bright side, his pain in his arm, neck, shoulder and hand is gone ... so the surgery did work. But, it is going to be a long road to travel to get him back to even being able to get out of bed.