Small Cell Prostate Cancer - My Journey

Hello, RandyD ~~~

Glad to read your update!

It sounds like your consultation, with Dr. Beltran from Dana Farber Cancer Institute was meaningful, informative, and insightful. I can tell from your message that it was beneficial and productive. Even better --- it was conducted virtually --- saving you time and travel expense.

I am THANKFUL that you have a "next step" plan mapped out --- finishing up your next chemotherapy infusion --- then taking a chemotherapy "HOLIDAY" --- but adding the strategy of timely and consistent imaging and scanning.

When I visit Mayo Clinic, Dr. Kwon often emphasizes the importance of timely imaging and scans, for complex cases. I have heard him say emphatically, "Imaging ... imaging ... IMAGING!"

He is a strong proponent for staying on top of things --- and having comparative scans from the past, to use with current scans. Your update today with Dr. Beltran reminded me of that.

I think you have a very well "thought out" plan, going forward.

I definitely think Dr. Beltran is a tremendous addition and asset to your medical team. Future scans can be shared with her electronically, as necessary. You're building history with her --- and she obviously has expertise in the field of small cell cancer.

Even better --- the mention of a possible clinical trial --- and the mention of a new approved medication!

Very thankful to read your update today, RandyD --- and here's to Dr. Beltran today, as well!

With all my best, from here in the Midwest ~~~
CYCLONE ~ # Iowa State Cyclone

I had an email exchange with Dr. Beltran about the Clinical Trial she mentioned in our earlier conversation. It is HPN328 entitled
Study in Patients With Advanced Cancers Associated With Expression of DLL3 Who Have Failed Standard Available Therapy
It is further described as - A Phase 1/2 open-label, Multicenter, Dose Escalation and Dose Expansion Study of the Safety, Tolerability, and PK of HPN328 in Patients With Advanced Cancers With Expression of DLL3 Who Have Failed Standard Available Therapy

Histologically or cytologically confirmed malignancy associated with expression of DLL3:

SCLC that has relapsed following at least 1 line of platinum-based chemotherapy
Malignancy other than SCLC with pathologic demonstration of high-grade neuroendocrine features or demonstration of DLL3 expression in a tumor sample, and that the patient has 1 of the following:
Disease that is relapsed/refractory to standard systemic therapy,
Disease for which standard therapy does not exist, or
Disease where standard therapy is not considered appropriate by the Investigator

This trial is not aimed specifically at neuroendocrine prostate cancer but rather a whole range of solid mass tumors. The drug was created by Harpoon Theraputics in CA and described by them as follows - HPN328 is Harpoon’s fourth Tri-specific T cell Activating Construct (TriTAC®) candidate in development. HPN328 targets DLL3, a protein highly expressed in a majority of SCLC tumors with limited expression in normal tissues. This selective expression makes DLL3 an attractive drug target for T cell engagers. Harpoon is currently conducting IND-enabling studies and expects to initiate a Phase 1 clinical trial of HPN328 in 2020.

I expect to learn more about it later this week and will pass along what I learn.

Hello, RandyD ~~~

I always follow your posts, and THANKFUL you are wrapping up your sixth and final chemotherapy infusion now!

That's a great milestone, I know --- and give yourself time to "rest, relax, recuperate, rebound, and recover" this weekend ...

I well remember the notorious "chemo crash" that follows each infusion --- and when it hits, it's noticeable.

Remember the importance of healthy hydration --- I found that remembering to drink water helped me rebound ... by helping the body process and eliminate the toxins.

Meanwhile --- NAPS and an earlier bedtime can help, too.

You mentioned returning to work --- I was able to keep teaching full-time during my chemotherapy treatments, but I definitely needed evenings and weekends to rest and relax, after a busy day of teaching.

Hopefully, your work might provide some extra breaks for you during the day --- or modified hours --- a shortened work schedule --- or a chance to do some work from home.

It's very important that you do all you can to take care of yourself physically --- but, I did find that focusing on my school year was uplifting to me, emotionally ---rather than dwelling on my next treatment or medical appointment.

There's a balance there --- keeping ourselves challenged, physically and emotionally --- and allowing ourselves time to rest and relax.

I'm fairly driven --- so I had to learn to take it easier, and keep life simpler ---while my treatments continued. I had to remember that my immune system was compromised during chemotherapy treatments, too --- so I had to be mindful of that.

Keep us updated, along the way, and after your CT and MRI scans, down the road. Hope there's GOOD NEWS to be heard, following those. Fingers crossed, and GOOD VIBES being sent your way!

Yes --- finding coverage for the high-priced medications many of us need can be a challenge --- most of the new cutting-edge medications have HEFTY price tags.

Even some of the generic versions of cancer-fighting medications that have been approved in recent times can still carry a hefty price tag, to be sure.

In all of your posts, I can tell you are being very thoughtful in planning out your "next step" strategies, to maintain your health goals -- and being very proactive in your approach to your BATTLE PLAN.

The newer medication LYNPARZA sounds promising, indeed!

I like the description that you shared, in which you stated LYNPARZA can create "homeostasis and then cancer cell death" --- sounds like a promising new weapon for warriors to carry with them, onto the battlefield.

Here's to RESTING & RELAXING after your last chemotherapy treatment, RandyD.

Keep us apprised and let us know how you are faring, going forward, and always know that you've got "brothers in the battle" here --- sending you their very best.

Here's to the good fight, the determined fighter, and the fighting spirit within you!
CYCLONE ~ # Iowa State University

I had my last chemotherapy infusions three weeks ago so Monday it was time for new scans. They did both a CT with and without contrast and a brain MRI the same way. I met with my Oncologist yesterday (Tuesday) to get the results.

The MRI showed no brain issues at all. I was pretty concerned about that as SCLC tends to metastasize there and I've been experiencing a few more headaches than I would normally expect to have. A big relief on that one!

The CT was kind of a mixed bag. My expectations were probably too high largely as a result of the very big change from the first MRI to the second (tumor shrunk by almost 75%) There has been some additional shrinkage but not as much as I was hoping for. The good news was that the lymph node involvement seems to have disappeared entirely and they found no indication of any mets anywhere in my body. My MO stated that the lack of additional tumor shrinkage indicated that they effectiveness of the chemotherapy I was on had probably run it's course and that further treatments with those drugs would not help any more.

The next step is the AstraZeneca drug Lynparza. I mentioned the cost in my last post but we did get good news there. At first, the insurance company refused to cover it claiming that since Lynparza was only approved by the FDA for mCRPC cancer, my using it for SLPC was off-label and this not covered. My MO appealed and got them to change their minds but then we were told that our co-pay would be just under $700 per month. The MO's office appealed that to Astra Zeneca but none of us were expecting a positive outcome since my income is considerably above their program threshold. We were all surprised when I got a letter from AZ stating that we had been accepted into their program and that the drugs would be free. Not sure how that happened but I am very grateful for it.

I will receive the drugs next week. They are pills taken at home so at least I won't need to go to the clinic for infusions any more. The downside is that they seems to have just about all of the SE's that my infusions had. I was hoping for a break from all of that but I guess it is just not going to happen. I will be sharing the results of my scans with both Dr. Beltran at Dana Farber and Dr. Paulson at MD Anderson right away. It will be interesting to see if they concur with the plan.

My next follow-up is in three weeks with new scans already scheduled for two months from now. In the clinical trials, Lynparza gave a median of 9 months of progression free results and a median of 19 months of overall survival. I guess we'll soon see what happens next.

Thanks for the updates Randy. Quite a series of good news events for you aver the past month. about time you got some positive breaks. Best wishes with the lynparza being effective for you.

Update
It's been about 60 days now since I had my last infusion of Carboplatin/Etoposide and about 30 days since I started Lynparza. A couple of changes have occurred with respect to the side effects from the two drugs. On the positive side, my hair is growing back! On the not-so-positive side, I find that I am having more frequent issues with nausea. I have meds for it and they work quickly but I am having to take them more frequently than before. My sense of taste is pretty much upside down now. While on the infusions, many things still tasted pretty good or were at least tolerable. Now, pretty much nothing tastes good anymore and some things are just plain awful. Oddly enough, chocolate is pretty much intolerable now. Even the sweetest of chocolates leave such a bitter taste in my mouth that I don't even try anymore.
The other big issue is weight loss. I was losing weight before but I am now down almost 60 pounds. I was a pretty big guy before but I haven't weight this little since about 1988
I continue to experience the fatigue that all of us seem to go through but mine has gotten so bad that a trip up a single flight if stairs requires me to sit down and recover. On top of everything else I had a Cardiologist visit me just about every day I was in the hospital back in December but I blew off his appointment after I got out. Probably a bad idea as I have now been diagnosed with a leaky heart valve. I am getting an EKG in about an hour and have an appointment with a surgeon in two days. Turns out that the leaky heart valve SE';s are - you guessed it - fatigue and dizziness. I am so tired of being tired that I will try anything to feel "normal" again.
My next scans are in 30 days and I'm very nervous about it. L:ynparza has been tested with good results for mCRPCa but not for Neuroendocrine PC. Basically I'm a walking experiment. If it works - fabulous. If it doesn't, I have only other experimental drugs as next steps. Kind of puts things in perspective for me.
I will update again after the scans.

Heck of a journey, Randy. A lesson for all of us, not to lose hope and to keep trying. Thanks for your detailed write-ups. Keep on keeping in!

Hello, RANDYD ~~~

Appreciative of your update --- I always follow your posts.

Mindful of you, as you address your heart valve issues. Here's hoping your cardiology team can help you address your heart issues.

You've got people rooting for you --- I am just one of those people!

Take things "one day at a time" ---- and I can tell you have a clear-cut treatment plan. You are always proactive and forward-thinking in your approach to medical treatments --- and that approach will inspire other readers.

Here's a quote I encountered recently, from athlete Michael Jordan:

"Obstacles don't have to stop you. If you run into a wall, don't turn around and give up. Figure out how to climb it, go through it, or work around it."

I am mindful of you, as you pursue new treatments, to maintain your health goals, RandyD.

Hope your cardiology team can help you, and share some good news with you soon.

I will watch for your next update. Sending my best to you today, RandyD!

We live to fight another day!

Handshake, camaraderie, fellowship, and well wishes ~~~
CYCLONE ~~~ # Iowa State University

Thanks to all who have responded. Had the echo yesterday and meet with the Cardiologist in about an hour. Normally I'd be pretty nervous but really looking forward to the possibility that this might help me feel better.

GoBucks

Would love to hear more.

Thank you for keeping us posted. Sharing knowledge and experiences is a gift you give us. Keep it coming and hope you situation improves.

Well, the leaky heart valve verdict is in. The good news is that I don't have one. The bad news is - that I don't have one. What I mean by that is I was looking for the positive diagnosis, and the reasonably straightforward placement of a Mitral valve clip, to solve the deep fatigue I wrestle with every day. I certainly understand that fatigue seems to be a by-product of everything related to prostate cancer. However, mine seems to be deeper than that. A walk up a normal flight of stairs now requires me to sit down and wait for the dizziness to end for my breath to return. Any physical exertion beyond minimal turns my legs and arms to jello. I have lost over 60 lbs., much of it in my arms and legs so I know I have lost a lot of muscle, but this just seems over the top.
My Oncologist thinks I have a heart problem. My Cardiologist doesn't think so. My Primary Care Dr. has now decided that she is going to get the two of them together to try and figure it out. I have had all of the classic heart tests including the cath test about 14 months ago. My Oncologist at the time in GA) told me that he wished his cath test looked that good.
It is really frustrating. Again I expect fatigue but this just doesn't seem normal. I used to restore old cars a hobby - can't do it anymore. I could pick up an automatic transmission and carry it across my shop. I couldn't pick up a box of tile the other day (Oh yeah, on top of everything else, we are having a house built right now) My wife had to pick up the tile. My wife keeps reminding me how much I have been through with the cancer, the chemo, the sepsis and septic shock, a new kind of chemo. I get it but it just doesn't seem like I should be this debilitated.

Next round of scans next week. I am hoping and praying for the best but I have to remind myself that I am taking a drug that was tested for mCRPC not Neuroendocrine like I have. I guess I will know nest week.

Hello, RandyD -----

Please take care of yourself.

I am mindful of you --- as you describe the fatigue, the weight loss, and the dizziness.

I hope next week's scans are helpful and informative.

I am thankful to hear about the "team approach consultation" that your primary care provider is proposing --- with your oncologist and cardiologist involved.

You certainly HAVE been "through the mill" in terms of treatments, various medical concerns, and some setbacks along the way.

That being said --- you continue to forge ahead --- and your iron will and perseverance has not gone unnoticed here.

I am sending you all my best wishes --- and will watch for your next update.

Sending you ALL of my encouragement and thoughts of support!

Strength for each day ----
CYCLONE ~ # Iowa State University

I've been on Lynparza for 60 days now. Last Friday was my first scans since I started on it. I met with my Oncologist today to get the results. I actually was dreading the meeting because I had convinced myself that the drug was not working and that my tumor was growing. The actual results were pretty much the opposite - no changes! He said there was no spread and that the tumor was unchanged from the last scan.

The plan now is to remain on the Lynparza and get a new scan every 2 months. It feels good to know that the drugs are at least holding everything in check.