The Importance Of Regular Scans

[MelaniePaul]

Hi everyone.

I am posting this here tonight because I feel that it is so important that all of you brave men ask for scans to be carried out regularly. In Paul's case, I think we could have discovered the liver mets sooner if a scan had been performed earlier. Now I am not saying that the doctors made a mistake, and I am not saying that an earlier diagnosis would have changed anything, but what I am saying is that a detection of the liver mets at an earlier stage may have been helpful in some way.

What follows is the whole treatment:

Histopathology: High grade localised prostatic adenocarcinoma

Gleason Score: 7 (3 + 4)

Initial PSA level: 42.8

Start of Casodex 03.12.2003 completed July 2004

Start of Iressa 03.12.2003 completed 18.07.2004

Start of Soladex q1/12 08.12.2003 last injection 21.06.2004

Start of radiotherapy 22.03.2004 completed 24.05.2004

December 2005. Biochemical failure with bone metastasis

First line hormone therapy by LHRH Agonist alone

Continuous administration

December 2008. Biochemical failure

Second line hormone therapy (combined androgen blockage)

July 2013. Biochemical failure with retroperibineal LH

Third line hormone therapy (continuous combined androgen blockage)

March 2014. Biochemical failure with bone and para-aortic LHs

Started on Aberaterone and Decapryl

Started Zoledronic Acid July 2014At the time of the start of Aberaterone PSA wass at 150. It fell within weeks to 0.2.

July 2016 PSA had risen from 0.2 to 3.1; continued Aberaterone.

Beginning of 2017 feeling increasingly weak, experiencing nausea and vomiting.

March 2017 PSA at 11. First discussion of Chemotherapy treatment, decided to wait.

In April PSA back at 7. Doctor said, "Because the PSA doesn't rise and Paul is not in pain, we don't need to repeat the scan so soon."

This is where I think we should have insisted.

Nausea, vomiting, fatigue continued.

PSA in May went up to 27 and 98.

When the scan was done in June, there were numerous liver mets visible, half of the liver tissue had been replaced by the cancerous cells.

And then our journey with Chemo began.

Paul was put on Taxatir first. First infusion was the end of July.

He felt bad all the time on it, symptoms were still the same as before.

So he was changed to Carboplatin.

The PSA had risen to 129. But that doesn't matter anymore when the cancer has changed.

First Carboplatin infusion at the end of September.

He had six infusions. A scan done at the end of the sixth infusion showed a modest reduction in tumors.

He was prescribed four more infusions of Carboplatin.

He had done two when he got sick.

Diagnosis: Influenza A and pneumonia.

He was treated for one week with anti-viral medication and antibiotics. Then he came home, was two days at home, and had to go into hospital again where he was diagnosed with the very same and put on much stronger antibiotics this time.

Liver markers were stable all that time.

CRP fell from initially 200 to 100 to 80 60 to 40.

Weakness, shortness of breath, and a general lack of interest in life continued at home. He just didn't have any energy left for anything.

And two and a half weeks after he had come home he began to have liver pain and I could feel the liver was very swollen. Paul's legs were swollen. The doctor told us it's because of a lack in Albumin which sometimes occurs in patients who have spent quite some time in hospital. After reading a lot, though, I think that the low Albumin levels were a sign that the liver was no longer working because Albumin is produced in the liver.

When we arrived in hospital on 14 May, Paul was diagnosed with both Klebsiella infection and beginning Sepsis.

From my point of view, the gap between scans from August 2016 to June 2017 was far too long. Scans in patients with such a diagnosis should be scanned every six months at least as time is of the essence here. This is why I decided to write all this done for you so that you might feel encouraged to ask for and insist on more frequent scans.

To say that just because a patient's PSA level is low and he is not symptomatic there is no reason for a CT and bone scan is simply wrong. I have said this to the oncologist in the hospital as well. I told him I wasn't really blaming him, but I would appreciate if, in future, he would not deny the scans for people when they are at such high risk.

Mel.

[dadeb]

Good advice! Thank you.

[Tall_Allen]

As you point out, I'm not sure that there would have been any difference in treatment or outcomes. Did you discuss radioembolization?

[MelaniePaul in reply to Tall_Allen]

Yes, we did. But hey said it wouldn't work because Paul's tumors were more like a net, very close together and too many of them.

No, of course the earlier scan would have made no or very little difference. But in some cases it may have helped. Let's say you have a scan where there is only a very small number of tumors in the liver, and the last scan was only two or three months ago, then it you would have caught it really early and could start treatment earlier.

Mel.

[Tall_Allen]

I was responding to MelaniePaul.

[MelaniePaul]

I have edited my previous post, by the way, and included the journey with Chemo as well.

[dress2544]

Thank you Melanie Paul for your advice to everyone who is battling with this disease. It will be helpful for many to be cautious in future.

[Break60]

Interesting take. I’ve had scans when PSA rose to the point where they could be effective which was 1.0 or higher.

Bob

[MelaniePaul in reply to Break60]

Hi Bob.

I just don't think that that is safe enough as PSA is not the only indicator for growth of tumors.

Mel.

[billyboy3]

Indeed a sad story but is the reality with those of us in the battle. I think you did all that you could, in fact far far more than most. That said, the reality is he was going to die of PC no matter what was done in what order etc. There is NO cure at present and everything being thrown at it, including the kitchen sink, only buys us time.

I again suggest that for all those with advanced PC, to make out a bucket list and live your remaining time at max mode, i.e. do whatever you want/can to live your final days with some joy, hug those close, get your affairs in order. Also, for those who can, get onto drug trials of any kind, for only by those of us who now have Advanced PC, and help our researchers, will those who come after benefit and gain freedom from dying of this damned disease. Make your life count against this terrible enemy. He will win today but in the near future, we will make him obsolete and at best, a common cold type of illness.

[MelaniePaul in reply to billyboy3]

That's true. Paul would have died anyway from this cancer and a scan done earlier in the year would not have made much difference to him. But I have no doubt that there are many, many cases in which it would make a difference to have scans done sooner rather than later.

Mel.

[Lombardi24]

Thx Mel. Sorry this has been such a nightmare for you both.

[Hidden]

100% correct. I couldnt help but to cry as i read that detailed review for paul and you . Very intense , for me as someone trailing behind you and paul. Especially that totall lack of energy or chronic fatigue. I have glimpses of that. No bueno! I personally appreciate you taking time to care and publish this to us. Its one brutal existance while in the fury of suffering. Hope that that you have love around you and that youre staying fit and active. I also,agree that testing is benificial. One reason to go on a test drug because they test you for the duration of the test... Nice to hear from you ..peace Mel🌹

[MelaniePaul in reply to Hidden]

Thanks for your post. Yes, I feel it is good to post here from time to time sharing either the personal experience which will hopefully help some of you but also give my view of certain things, like the one about scans, to those who are on the same journey but still at different stages perhaps.

Mel.

[Hidden in reply to MelaniePaul]

Thanks!

[Stevemarr]

I fell last week, given had bone Mets was checked out with more scans. Doctor found a new bone met in spine, while bad news gives me an earlier opportunity to treat.

[Hidden in reply to Stevemarr]

Thats sucks man! Best results from treatment.. take care...

[gusgold]

MP,

doubtful that scan would have made any difference...Paul lasted as long as he did not because of his treatments but because of you.

[Hidden in reply to gusgold]

I agree !

[Brbnbrn]

I agree in general. At the start of this journey with my husband, Brian, now 64.... in September 2016 he had a PSA of 9.6. No one was alarmed and we were never contacted, so we innocently thought all was fine. In September of 2017, he had his annual PSA check and it was 540. He was referred to a urologist. He didn't schedule his biopsy until late December. His PSA was 1,250 by that time. He was told it was advanced, aggressive with a 5+4 & 5+5 Gleason score. We quickly began learning all about Advanced stage IV PCa with mets to bones, lymph nodes and lung. This site, people like Tall Allen and others, helped SO much! (Thank you.) He began 6 rounds of chemo, Casodex, lupron and now is on Zytiga. He gets his next PSA this week. Last one was 6 weeks ago and it was 2.2. But, if we weren't so trusting of the medical system, we would've insisted on follow up a year ago and maybe wouldn't be HERE right now.

[Hidden in reply to Brbnbrn]

Most of us advanced characters wouldnt be here without treatments . My love is the reason that im here. Besides the treatments, i have a reason to endure whatever comes in order to love my wife for another day,, hopefully many good days ahead for us all.. but for all of us that is not a given. although we’re weakened and diminished we shouldnt let our capacity to give and recieve love to be diminished either.. It helps to have a strong loving partner. We suffer together when we love. Keep yourself strong in this journey.. also . Its no cakewalk...

[MelaniePaul in reply to Hidden]

I think it is so true what you say about the importance of love on this journey. For example, Paul and I were always saying this when his PSA dropped from something like 75 in 2009 to 0.2 at the beginning of 2010, which was the time during which our relationship had grown and we had made the decision that I would come to Ireland and that we would live together. He was so happy then and he said, "Now my life has meaning". And I think that was it; he felt that his life had meaning and that he wanted to go on and that give his whole system so much of a boost and so much strength that he was able to fight the cancer so much better and that all of a sudden there was almost no cancer activity left. The doctors at the time tried to explain this in medical terms of course, but one oncologist admitted that the only explanation he saw was that Paul's circumstances had changed dramatically for the better.

[Hidden in reply to MelaniePaul]

My wife gives me the same love.. Thats why i am here also.. Paul was loved as i am. Two lucky guys in that respect... Peace Melanie! Much love💕

[Tjc1]

Thank you mel. I hope you are doing ok !

[Thinus]

Thank you Mel. I feel sad every time one of us PC's die. At the same time, it looks as if Paul gave it a good go. May God give you a new way forward.

[williamsbooks]

I totally agree and insisted I get a bone scan even if I had to pay for it(300.00) I am in 6th year of mestastized prostate cancer and they are inactive at the time. Have exercised 6 days a week and worked through fatigue(very difficult, but paid off) Charles

[Hidden in reply to williamsbooks]

Awesome!

[ontheroad589]

I am actually overdue for my 6 month scans, and with my PSA now hovering around 900 for the last 6 weeks and getting ready to do Docetaxel number 9 in two weeks, I will make sure that in between 9 and 10 I get my scans done. I know that my bone mets are progressing, especially in the femurs and my hips/lower pelvis, but so far so good on the soft tissue/organ involvement. Thank you for your contiued kindeness and care for this community.

[tallguy2]

Amen! Great advice.

[RonPavluvcik]

I agree on the need for scans....after getting chemo for 5 months, first taxotere then jevtana then carboplatin, none of them worked to stop progression, instead I had severe fatigue and shortness of breath and in May I developed pneumonia, so I had a cat scan last week July 2, 2018, and it indicated blood clots in lungs...further restricting breathing...onc put me on Xarelto and local hospital approved home oxygen for me....am a bit better a week later...I was going to stop the chemo and look for a clinical trial, but now onc says I can't get into a clinical trial for at least 3 months due to blood clots...(no drug company testing out a new drug would want me in the trial with that condition)...so, whereas I was going to stop with the ineffective chemo, onc says might as well try another type of chemo....I see him in 3 days to find out the name.....latest PSA from 2 weeks ago was 4,200...believe it or not.....was about 30 back in April 2017....Ron in CT 203-767-1123

[MelaniePaul in reply to RonPavluvcik]

Oh dear, I am so sorry to hear this.

You know, I feel that, once people are on Chemo for a while, all sorts of complications can develop and then you are in the difficult situation that, on one hand, you should continue treatment to stop the cancer from growing but, on the other hand, your body is so weak that it mightn't take Chemo well and it might actually make you very sick.

Getting pneumonia in your situation sounds like your system telling you that it has been weakened quite a lot by your treatments. And it is so horrible that the Chemo wasn't even effective. I mean, you are damaging healthy cells in your body in this fight against the disease and then the agent isn't even effective?!

I agree that you should try a different Chemo. Which one were you on so far?

And would you consider getting another lung XRay done to see if the pneumonia was treated properly and has gone? Also let them check your CRP to see if there is still an infection left in your system. Let them check Albumin levels in the blood as well.

So, if I were you, I would only agree to more Chemo if lung XRay comes back clear, if another CT and bone scan have been performed and CRP and Albumin are within the normal range

If you go back on Chemo and your system is still battling with the infection, you could get really sick. So I would not do it unless the tests metioned above come back satisfactory.

Now, of course, I am not a doctor, you know that, so what I am telling you is only my opinion after first-hand experience with Paul and after a lot of reading and research I have done and conversations with doctors I have had over the years.

Good luck, please keep us posted, and don't give up hope that something will work for you a little longer. But also don't forget that quality of life and comfort are important. And, if the time comes that palliative care is more the option rather than more fighting with the disease, know that there is fantastic palliative care out there to help you not to be in pain and live a more comfortable life.

Mel.

[MelaniePaul in reply to MelaniePaul]

Just to explain: I am going on about the Albumin because I assume you were on antibiotics to treat the pneumonia and possibly even in hospital and sometimes long illness plus staying in hospital can lower the protein level in the blood and the major side-effect from that is shortness of breath.

[Hidden in reply to RonPavluvcik]

Whoa...I pray for some reprieve in this storm for you ... Keep the faith..

[RonPavluvcik]

Thanks for feedback - my response: (1) As indicated in original post, I had 3 chemo drugs so far, TAXOTERE, JEVTANA, and CARBOPLATIN....(2) A chest x-ray last week indicated lingering pneumonia....doc gave me more antibiotics to kill it completely...(3) Yup, probably a good idea to wait a bit for existing issues to subside before getting that new chemo drug...Ron in CT

[MelaniePaul]

Oh sorry, okay. I should have read your post a couple of times perhaps before responding.

Yes, I would wait a little bit longer. But of course not too long either because then the cancer might spread further.

I don't know what Chemo he could try next. It sounds like you have head first line, second line and third line treatment - this is according to practice here in Ireland anyway.

Keep us posted, okay?

Good luck, I hope you will feel better soon and that the next chest Xray will be clear.

[RonPavluvcik]

I just found out from my Oncologist that the next chemo drug he would be giving me, is called MITOXANTRONE...and now he says there might be a clinical trial I can get into after all, despite the blood clots...so for now, I am waiting for a consultation about a possible clinical trial..Ron