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This is for ANGSTY

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Posted 6/2/2015 6:54 PM (GMT 0)
So, Angsty, I have a few thoughts about your husband's case. First, have you done a bone
biopsy to confirm that the one met is, indeed, adenocarcinoma of the prostate? There are
other reasons for a scan to light up in a specific area...I would want to confirm. From
looking at his stats, I believe that there is every chance that you could be treating with "curative
intent"...PSA relatively low, only one alleged bone met and several "suspicious" areas in lungs.
Also, he is young.
There is a gentleman on the forum, Nomer Schottzenheiner(spelling??), formerly Lupron Jim, who was
originally diagnosed with bone mets, and later, that was proven wrong, I believe. I am not
trying to offer false hope but am concerned that you all don't have a complete picture yet. I
have learned so much in the last year.
If the bone area is prostate cancer, you are definitely developing a great treatment plan. The docetaxel
was successful for my husband. It drove his PSA down and has arrested osteoblastic activity in
his mets. So, all in all, we are glad he did it. It was no cake walk but each man has a different
response/reaction, some working every day, some laid low, you won't know until he starts the 6
cycles. I just tried to provide good food, lots of fluids and smoothies and took on more of his
responsibilities so Frank could move at his own pace. My husband has multiple metastases, pelvis,
ribs, thoracic spine so his treatment includes Eligard, Zometa, docetaxel, calcium and Vit D3
supplements, at this time. The pre-meds that his medical oncologist gave Frank before each cycle
of docetaxel were like wonder drugs...he had no nausea at all during the 18 weeks of chemo.
Lost most of his hair, taste buds went off, skin got really dry, additional fatigue but he is now
starting to bounce back as last cycle was 4/30/15.
Keep asking questions. That's why this forum exists.
Lisa
Posted 6/3/2015 2:56 AM (GMT 0)
Hi Lisa,
Thanks so much for this.

We haven't done a bone biopsy yet -- it's a really valid point to raise because the first oncologist we saw looked at the scan results and said it might not really be a metastases (because of its structure or something like that) and suggested a bone biopsy. But then he took a look at our prostate biopsy results, saw Gleason 9 and changed his mind, saying it was most likely cancer and we shouldn't risk the pain of the bone biopsy because of that. In addition to the regular bone scan, we did do a choline pet scan though where this bit lit up --- i'm not sure if that makes it any more conclusive? I saw that Frank has done a bone biopsy -- how was his experience with that?

The doctors also explained the low PSA to us by saying that given his cancer at Gleason 9, it was probably one of those where the cells are so poorly differentiated that they don't reflect as much PSA activity. We are going now for gene testing though, as we have heard that there's been some positive responses to PARP-inhibitors for people with BRCA1/2 mutations - which, with a mother and aunt dying of breast cancer quite young, he is quite likely to have...

So good to hear that Frank's experience on docetaxel was good. I have started to go into momma bear mode with the food and the smoothies and the diet as well so hopefully that will prepare my husband better for the chemo!

All the best to you and Frank and our prayers are with you too. Really appreciate your reaching out with advice! I will keep you posted on the bone biopsy.
Posted 6/3/2015 1:34 PM (GMT 0)
Good morning Angsty,

What is the time difference between Idaho and Singapore?...probably should be saying Good night!

Frank's bone biopsy was uneventful. He was awake for the procedure but numbed up in his pelvic area.
All I remember him telling me is that it was loud but not painful. He also had some pain and soreness
for maybe a week afterwards, but nothing that needed pain meds. The radiation oncologist that we
were consulting at the time is the doc who recommended the bone biopsy as he wanted "definitive
evidence" that we were dealing with metastatic disease. We were told the "general rule" is not to
look for mets until PSA hits 20. Obviously, that didn't apply to Frank:-(
Frank just recently had blood drawn for the BRCA 1/2 test and we don't have the results yet. He had
a mother and grandmother who both died of breast cancer and his older sister is now doing reconstruction
after a preventative double mastectomy. If the results are +, we plan on olaparib, a PARP inhibitor, as
next step in treatment. Actually, also talking with a radiation oncologist today, thinking about debulking
the primary tumor while the cancer activity is low from the chemo. The debulking is rather outside the
box treatment but I feel I have a pretty good argument for trying it and some clinical data to back me up.
So, we'll see...we are always balancing "quality of life" versus side-effects of treatment. Over a year into this for the two of us and our thinking is evolving as journey further down this road.

Hope this is helpful. You sound like you are asking the right questions and I, and others, hopefully, will do our best to answer from our personal experience.

Lisa
Posted 6/3/2015 3:42 PM (GMT 0)
Good morning Lisa!
Yes - there's a 14 hour time difference between Idaho and Singapore (we are ahead) so it's 11am our time on Weds when it is 9am Weds your time. :) We have never been to Idaho -- hopefully we get a chance to someday!

Great to hear that Frank's bone biopsy was so uneventful -- my husband was a bit concerned about pain and SEs.

Thanks also for bringing up the debulking -- i had asked our doctors about this (in a clumsy, non-technical way since i didn't realise it was specifically called 'debulking') but they didn't sound keen to consider this, at least at this stage. I will be sure to raise the topic again later on because essentially my husband has a really large and obvious tumour that takes up almost half his prostate. It's been there since the 1st biopsy, which is why after the 1st biopsy results were negative, we were pretty shocked that the 2nd biopsy could turn up a G9 Stage 4. "How could the first doctor have possibly missed that lump??" We were in fact so in doubt that we sent our biopsy slides to 3 different doctors for review, although finally by the 3rd, we decided to just face facts...

I've read that Olaparib had great results on the BRCA mutations minus the side effects, so i do hope Frank gets to qualify for that.

I wonder also if you have any advice on choosing an oncologist.
The situation in Singapore is as follows:
- we have really good medical care in both public (government-run) research hospitals and great private hospitals as well. What tends to happen is that doctors will do a long stint in the public hospitals and then move into private practice.
- The public hospitals are great, but have lots of patients so slightly longer wait times. The pros however are that at that scale they have more ongoing clinical trials and a wider multidisciplinary care network .
- The private hospitals have a much more "lux" environment (and shorter wait times) and cost more, but cost is not a huge issue for us as my company's insurance is covering in full the cost of this care. However, we're a bit concerned about lack of access to clinical trials and also, less of a multidisciplinary care approach.

We have been recommended to the best doctor for prostate in private practice and the best doctor for prostate in public practice. We've seen both and feel comfortable with both of them. The doctor in private practice has about ~3 more years of experience and used to be the best doctor for prostate in public practice before he set up his own clinic and has told us that he too has access to clinical trials.

We feel like we're learning slightly different things from both of them, eg. the public doctor supported early chemo (because of the CHAARTED results) and explained that the Foundation One testing we were planning on doing tests for somatic mutations in the tumour vs. germline mutations like BRCA1/2 so that might give us more options. The private doctor pointed out the slightly odd petscan results and suggested the bone biopsy.

At this immediate moment, i'm leaning towards going to the doctor in the public hospital to ensure that we have access to the latest and greatest, but do you think there is anything else we should be considering at this point?

I can't tell you how much i appreciate your advice. I feel like i'm standing on the shoulders of giants, learning from you and all the others who post on this forum. Thanks once again and all the best to you and Frank.
Posted 6/3/2015 4:06 PM (GMT 0)
Lisa/Frank and Angsty,
That's good all around information from you both, thats what I like about this site. You mentioned somethings that I can research for my future treatment. Lisa I've been following your guy's story for a while now, hoping for the best. Thank you and I will be following both your posts, I like to follow Lupron Jim, errr, Nomar and Tall Allen always. I'm sure others will chime in with good advice, looks like your on the right track with the specialist over there in Singapore.
Hang in there and don't get discouraged, Keep the Faith,
Dan in So Cal smilewinkgrin
Posted 6/4/2015 12:12 AM (GMT 0)
Angsty,

A couple of thoughts...FWIW, I think "debulking" of your husband's tumor would probably be easier once
the lupron has shrunk it in size. I know my husband's urologist has said Frank's prostate is now about size of
a walnut which, I think, is a good thing. We are going to work with a new radiation oncologist, (first visit was today) and see if we can get approval from our insurance company.

Secondly, as to private vs. public...if it was me...I would go private as the wait times drive me crazy. You
will end up spending so much time in various doctor's offices and infusion centers that every little minute
you don't have to spend waiting on doctors adds up. Also, at this time, conventional treatment protocols are
more that sufficient to treat your husband. If the time comes that clinical trials are necessary, you can
pursue that then. I like that the private doctor wants to do a bone biopsy, also. My impression is that you will keep up on what's new in clinical trials with or without a doctor, as I do. There are several websites that will send alerts to your inbox about clinical trials that may apply to an individual's case, though the names escape me at the moment.

Hope this helps, from one caregiver to another...Lisa
Posted 6/7/2015 7:58 AM (GMT 0)
Thanks Dan and Lisa!

Lisa - makes sense on waiting for prostate to shrink and thanks again for the helpful advice. I think i am a "doer" by nature so the fact that we have done everything we can, and need now to just watch and wait for the lupron to take effect, makes me jumpy. I have channelled this energy into rejigging my poor husband's diet -- we are now firmly moving in the plant-based direction with lots of fruits and veg and strangely despite the diagnosis, he's feeling more energetic since we started eating healthier.

We sourced around more opinions locally and more people have told us since to stay with the big government hospital -- we've been told we can enter as a "private patient" and fix mostly accurate appointment times so the wait times won't be so bad, and the upside is that they have more specialists and resources so hopefully that equates to better all around care down the road. We are going to go to both private / public doctors one more time and then make a decision but i think we will likely stick with the public hospital guy and that will mean we start chemo in Aug. (The private doctor was not willing to consider chemo at this early stage because he viewed my husband's case as 'low volume' mets) I am looking on Amazon now for those hypothermic mitts that are supposed to help your nails...

I will keep you both posted as i get on, in meantime, do take care and thanks again for all the support!
Posted 6/16/2015 2:31 PM (GMT 0)
Lisa, first PSA test result back and we've gone frm 15.6 on 7 May to 4.2 as on 12 Jun.
That seems like a good thing -- is that a good rate of change? It also strikes me that this is the first of many test results that we'll be waiting for....

We also went to the cancer geneticist and were told that apparently BRCA1/2 mutations tend to respond particularly well to chemo (as seen from breast cancer/ovarian cancer patients in the same hospital), but that we'd have an approx 14% chance that we would have this mutation. Results come back in 4 weeks so i guess we will know then.

How are you and Frank doing? hope all is as well as it can be...
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