So... I have Dad’s records

So for the past 2.5 years I’ve been going off what my parents fed back to me after appointments. I now have a copy of Dad’s records.

Dx...Mar 15: t3a M1a Gleason 9 psa:33.8 (it says t3b on some of the notes)
He was offered ‘hormones’ and radiotherapy. I have often wondered why chemo wasn’t offered early on, I’ve wondered if there were problems with his heart...according to these reports... nothing suggests heart problems. Treatment given is listed in signature.

Looking through everything I realise Dad has done very well considering, his psa was controlled for a good while. After looking at everything closely, when my Dad’s psa jumped up to 13.3 back in June 17, I really think they should have taken a more aggressive approach ... all that was suggested was along with Zoladex injections he commenced maximal androgen blockade with bicaltumide, 50mg daily. At this point you wouldn’t have known there was anything wrong with him.

He returned 3 months later and by September it was 41.3, told to come back in a month, by November 70... I could go on... that was when Zytiga was mentioned.

Which brings us to April 18 ... I thought psa was 280... it had actually jumped to 488.5 , alp rising
which was when he was taken off Zytiga.

What I find rather disconcerting about it all is the apparent lack of forward planning. To me that’s how his notes read.... it’s all ‘doing very well......’ boom ‘no more treatment’. Even the fact it just says ‘multiple mets’ on the notes... all a little vague for my liking.

As some of you will know Dad is still battling on, extreme weakness/stiffness some days but in little pain which we are so very thankful for. I just wanted to post because I wondered what you all thought about his treatment. Maybe it’s just me but I think the options have been pretty limited..considering he was ‘well’ up until November of last year and surely would have been a candidate for chemo/clinical trials etc. I’m no dr though so who knows... me and mum are off to see a different oncologist next week... just to cast his eyes over things, maybe offer some advice. We shall see what happens.

Thanks for listening... just needed to have a little vent. What’s done is done, would just be interesting to hear your thoughts.

Looking back I sincerely wish I had pushed more for a second opinion... I would say always go for that second opinion.

Love to you all.
k x

Kathy said...
I have often wondered why chemo wasn’t offered early on

Based on the Dx of M1a, it probably wouldn't have done much for him. It is only in the last year that Zytiga emerged as a standard of care while the cancer is still hormone sensitive (and metastatic).

It's very hard to do forward planning when each individual follows a different course. Also, new therapies are becoming available all the time. Dealing with it as it develops is a better approach, imho.

" life can only be understood backwards...but must be lived forwards..." Soren Keirgagaard 19th century human being...like the rest of us... birthday coming up cinco de mayo...most folks never heard of him...but he knew a lot about them...

Thank you everyone. And don’t worry I’m not driving myself round the bend with the ‘what ifs....’
I have been through the anxiety of ‘why aren’t they doing this/that/the other. Yes, still praying for something that will extend his life, but very aware of quality of life... so we shall see. I just wanted to know what people thought. I have spoken to people over the years on here and have been very impressed with the different Drs approaches and how patients have been kept ‘in the loop’ about treatment... but like Tall Allen says, everyone is different. I realise Zytiga has only recently been considered as a standard of care option earlier on... and as It didn’t work for Dad I doubt it would have made much difference starting it early on. Interesting to hear that with an M1 diagnosis chemo may have never been an option. That kind of helps me get my head round things.

We are all focusing on making Dad’s life as happy as possible right now so shall be setting off soon to see him. He’s really enjoying fish at the moment so that will be dinner.. yes he’s still eating, some days very well.

I shall post after Wednesday and let you all know what the new oncologist says.

Not sure if this will be of any interest to people but this is the man we are off to see. The link is a year old though so may not include the even more up to date treatments, but I found it quite interesting.

https://youtu.be/WTDSNe7jBxY

Hope you all have a lovely day.

K x

Hi 142... you’re right, I suppose I do feel responsible and I recognise that I can’t control the outcome. Taken on board.. sorry if this post may have raised any issues.
K x

Kathy said...
Interesting to hear that with an M1 diagnosis chemo may have never been an option.

Just to clarify what I wrote... He had a Dx of M1a. That means metastases were found in lymph nodes outside of the pelvic area, and not in his bones or visceral organs. Analysis of CHAARTED subgroups showed that the survival benefit of early use of docetaxel only occurred in men who had a high volume of metastases in places other than lymph nodes. They defined high volume as the presence of visceral metastases (M1c) or ≥4 bone lesions (M1b) with ≥1 beyond the vertebral bodies and pelvis. So his M1a would not have put him in the high volume subgroup.

You are assuming that you can note have "extra capsular tumour extension" if you do not have PNI...the Lymphovascular invasion has zero to do with with the rest of the findings you mention...the reality is PNI is prognostic on biopsy ...in that it COULD create EPE...It did not if there was no PNI...the epe came from somewhere else...which happens all the time...That EPE...arguably led to the SVI...which arguably led to the systemic cancer your dad is experiencing now...there are imo no inconsistences in the report at all...and as you sad,,,"we are where we are" All this is is understandable...if you want to study up on the dynamics of acronyms...EPE ECE PNI PIN PCA ...complicated...but with study ... can be figgered...one of my peeves with internet forum like this ...is that a lot of folks do not take the time to be a self advocate...hence relying on others to do the work that imo they shoild be doing...even robbing them of this opportunity for personal growth... having said this...I completely understand this dynamic...most folks do this in all apects of their life...this understanding on my part...however...does little to mitigate a grieving of a highly sensitive synaptic nueral network.... in my being...not of a sappy nature ...more...dare I say scientific nature...not yet imprinted... just seeing the dots...so as to connect and to get closer to "knowing as I am known"...apologies for the whimsy...wouldn;t it be wonderful if internet forums were not needed...and folks could just....well I'll let the forum collectively finish that thought.... To sleep now perchance to dream...who fricken cares who said it first...all is certainly vanity...reflections in mirrors dark

Thanks Lisa will let you know what happens.

Logo... I don’t have a medical background so yes.. all very difficult to grasp. Dad doing well the past 2 days, eating well so focusing on the positives where we can.

X

I raised a suggestion to you 10-days ago about inquiring with the oncologist regarding use of either Zoledronic acid (Zometa) or Denosumab (Xgeva) for the purposes of PREVENTING skeletal-related events (SREs). SREs are distressingly common amongst men with bone mets, and have a deleterious effect on patients.

The two drugs I've listed are NOT cancer-fighting; rather, they slow and delay the continuous & accelerated bone decay that is taking place now which is putting dad at greater risk of a serious & sudden SRE set-back which—while not typically fatal itself—can lead to such a rapid decline in health and well-being that mortality often follows quickly. (Quite frankly and honestly, when an advanced cancer patient too weakened to take additional chemotherapy suddenly gets placed permanently into a wheelchair—a common outcome—following a SRE with the associated loss of independence, etc., their will-to-live is often very quickly sapped.)

A SRE can happen to weakened bones from an otherwise seemingly minor fall, and even by bumping into something or having something dropped onto his lap. If untreated (with one of the drugs I listed), half of all advanced prostate cancer patients with bone metastases will experience at least one SRE over the first 2-year period since M1b diagnosis, and once a patient experiences an SRE, the risk of a subsequent SRE is increased.

In addition, though you have mentioned dad has not yet reported bone pain, these drugs also palliate the very typical and common bone pain which eventually accompanies virtually all M1b…but for now, preventing SREs is critical.

I stressed that these two bone-targeted therapies are NOT cancer-fighting drugs, and note that they are NOT as aggressive on the body as chemotherapies…but there ARE possible side effects including kidney function impairment which can be managed to some degree by adjusting dosage at each administration (several weeks apart). Dad may be too weak for chemo, but may NOT be too weak for one of these preventative drugs; if when asked, the doctors say that he is too weak for either of these bone drugs, then that says a lot.

I thought I’d raise this again because I’ve seen no mention of it in your posts over the last 10-days, despite visiting several oncologists. If he’s too weak, then he’s too weak…but it is, I believe as I said on 4/19, of great importance to maintaining quality of life for dad and therefore worthy of inquiry.

Learn a bit more about SREs and their prevention here:

• Reducing Skeletal-Related Events (Cancer Network)
  
• Management of skeletal-related events in patients with advanced prostate cancer and bone metastases (PubMed)
  
• Denosumab treatment in the management of patients with advanced prostate cancer: clinical evidence and experience (PubMed)

Post Edited (NKinney) : 4/30/2018 9:15:07 AM (GMT-6)