Possible reoccurrence after HDR Brachytherapy

cchqnetman

I was treated for prostate cancer in Feb and March of 2013 with 2 fractions of HDR (14 Gray each). 
In 2014 I was diagnosed with Myelodysplastic Syndrome (MDS) which has progressively gotten worse. 
In the workup for a Bone Marrow Transplant (BMT) my doctor ordered a Nuclear Medicine Bone Scan. 
It revealed a couple areas of possible metastatic disease. 

My PSA has gone from a nadir of .98 to 2.44 (0.976 .44, 1.35, 1.33, 1.26, 1.04, 1.1, 2.29, 2.74, 2.44). 

Has anyone had a reoccurrence after HDR?  If so how did they detect it and what did they do for it?

Thanks!!!

Max Former Hodgkins Stage 3

MDS

cchqnetman,

MDS is a form of anemia, essentially a pre-leukemia, or precursor to leukemia, which is a cancer of the WBCs.  Most new cases are unrelated to PCa, but MDS is often (not always or necessiarily) believed to have been caused by radiation in patients who have been treated earlier with some form of radiation (for whatever form of cancer they had previously had). But many MDS cases occur in patients who have never had radiation therapy.

You are very close to the definition of PCa post-radiation relapse (nadir + 2, or what would be .98 + 2.0 =2.98 [verses your current somewhat lower 2.44]).  HDR is considered to have been most effective against potential relapse with a nadir of <.5

Your future treatment will have to be by a hematologist/medical oncologist.  It is within the realm of possibility that your bone tumors are NOT PCa, but rather MDS in origin, whether caused by PCa/radiation or not.    Leukemia MDS is treated essentially via chemo and/or stem cell transplantation (SCT).

Your situation is complex:  leukemia tumors are treated differently from tumors that are metastatic PCa in origin.   Specifically, hormonal therapies (HT) are of no use verses leukemia (or, at least, I have never heard of such a thing). Ergo, it will have to be determined what is causing the bone tumors.

Three years after being clean of lymphoma it was feared that I had MDS, due to routine blood panels showing me severely anemic. I went on IV (drip) iron for a week. My case resolved, and anemia never reoccured, and the doctors were baffled about the anemia, and they could never give a cause for it.  But it made me slightly familiar with short term treatment for severe anemia.

It may be that you will require treatment for both metastatic PCa and MDS.  Bottom line: you need to be dealing only with a top-flight medical oncologist, one trained to treat patients with complex or multiple diseases at once.   It is possible that someone here has had this PCa --> MDS experience, but I cannot recall one myself.  Your issue does not seem to be so much just potential relapse of PCa, but PCa followed by MDS.  Note well: I have NO (zero) medical training, which is an assumption you should understand of all writers here, unless they specify otherwise.  I am writing from personal experience and the basic facts regarding PCa that I have learned over the last few years, nothing more.   If your doctor proves what I have said is incorrect on some particulars, GOOD !

Good luck with this tough situation,

max

 

Swingshiftworker

Complicating Factors

OP: Sounds like Max has alrady given you pretty good advice. 

Recurrence after any treatment for PCa is possible.  Follow-up treatment after HDR BT could include another HDR BT treatment or various external beam radiation methods such as IMRT, IGRT or SBRT but, before you undergo any followup treatment for PCa, you will probably need to sort out whether the BMS is independent of or related to the PCa. 

Would hate to see you get a BMT 1st and then later find out that PCa has migrated to the new bone marrow further complicating your recovery BUT, then again, I imagine you are in a lot of pain/discomfort because of the BMS and that may have to be treated 1st nonetheless.

Good luck!

cchqnetman

Max Former Hodgkins Stage 3 said:

MDS

cchqnetman,

MDS is a form of anemia, essentially a pre-leukemia, or precursor to leukemia, which is a cancer of the WBCs.  Most new cases are unrelated to PCa, but MDS is often (not always or necessiarily) believed to have been caused by radiation in patients who have been treated earlier with some form of radiation (for whatever form of cancer they had previously had). But many MDS cases occur in patients who have never had radiation therapy.

You are very close to the definition of PCa post-radiation relapse (nadir + 2, or what would be .98 + 2.0 =2.98 [verses your current somewhat lower 2.44]).  HDR is considered to have been most effective against potential relapse with a nadir of <.5

Your future treatment will have to be by a hematologist/medical oncologist.  It is within the realm of possibility that your bone tumors are NOT PCa, but rather MDS in origin, whether caused by PCa/radiation or not.    Leukemia MDS is treated essentially via chemo and/or stem cell transplantation (SCT).

Your situation is complex:  leukemia tumors are treated differently from tumors that are metastatic PCa in origin.   Specifically, hormonal therapies (HT) are of no use verses leukemia (or, at least, I have never heard of such a thing). Ergo, it will have to be determined what is causing the bone tumors.

Three years after being clean of lymphoma it was feared that I had MDS, due to routine blood panels showing me severely anemic. I went on IV (drip) iron for a week. My case resolved, and anemia never reoccured, and the doctors were baffled about the anemia, and they could never give a cause for it.  But it made me slightly familiar with short term treatment for severe anemia.

It may be that you will require treatment for both metastatic PCa and MDS.  Bottom line: you need to be dealing only with a top-flight medical oncologist, one trained to treat patients with complex or multiple diseases at once.   It is possible that someone here has had this PCa --> MDS experience, but I cannot recall one myself.  Your issue does not seem to be so much just potential relapse of PCa, but PCa followed by MDS.  Note well: I have NO (zero) medical training, which is an assumption you should understand of all writers here, unless they specify otherwise.  I am writing from personal experience and the basic facts regarding PCa that I have learned over the last few years, nothing more.   If your doctor proves what I have said is incorrect on some particulars, GOOD !

Good luck with this tough situation,

max

 

Thanks

Max,

Thanks.  I have an appointment with a urologist/oncologist in the same center that I am going to for my MDS and stem cell transplant.  I posted another question about PSA readings post HDR.  I am curious to see what others are seeing post HDR.

 

Thanks again

David

cchqnetman

Swingshiftworker said:

Complicating Factors

OP: Sounds like Max has alrady given you pretty good advice. 

Recurrence after any treatment for PCa is possible.  Follow-up treatment after HDR BT could include another HDR BT treatment or various external beam radiation methods such as IMRT, IGRT or SBRT but, before you undergo any followup treatment for PCa, you will probably need to sort out whether the BMS is independent of or related to the PCa. 

Would hate to see you get a BMT 1st and then later find out that PCa has migrated to the new bone marrow further complicating your recovery BUT, then again, I imagine you are in a lot of pain/discomfort because of the BMS and that may have to be treated 1st nonetheless.

Good luck!

Thanks

Swingshiftworker,

Thanks.  The stem cell transplant has a median survival time of three years if it is successfull.  Maybe it will come down to which one gets me first.  See my post to Max also.

 

Thanks again

 

David

Max Former Hodgkins Stage 3

cchqnetman said:

Thanks

Swingshiftworker,

Thanks.  The stem cell transplant has a median survival time of three years if it is successfull.  Maybe it will come down to which one gets me first.  See my post to Max also.

 

Thanks again

 

David

Sorry

David,

I am sorry I guessed correctly: that you would be getting a SCT (stem cell transplant).  This means the MDS was confirmed (and most likely is the cause of the bone tumors).  From what I have read here, a PSA as low as yours seldom to never has localizable bone tumors (i.e., no tumors large enough to be seen on scans).

I never had a SCT, but have been reading about them at the Lymphoma Board for years, since it is a common salvage therapy for people who have relapsed with Hodgkin's and Non-Hodgkin's lymphomas.  I must say that it is HARSH, and the prep time is often measured in months, but it seems you are in no short-term danger; the wait should be of minimal relevance, and is necessary anyway.  Basically, you will do some preliminary chemos to reduce the cancer as far as possible.  It will aslo be determined whether they are going to use your own stem cells (new cells routinely produced in your bone marrow), or get a doner.  Both techniques are common, and about equal in success, but using your own cells reduces GvDS ("Graft versed Donor Syndrome"), in which the body rejects the doner cells, similiar to organ transplantation rejection.  There are many drugs that can treat or overcome GvDS when it occures, however.

I am unfamiliar with MDS, but it is possible that radiation might be used agains the bone tumors, or even substituted for the chemo, I just don't know.  After this initial treatment you will then go in as an impatient for the SCT part itself, which can take a week to several weeks as an impatient. 

I have never heard the "three year median survival time" statistic.   It does not match what I hear at lymphoma at all, in which many patients are in remission for life.   Your  case of PCa seems minor, given your current PSA.  You asked at the other post for the definition of PCa relapse following RT (for men who still have the gland in place), and it is a PSA of Nadir plus 2.0    Technically, you are not there yet, if ever.

I know this has to be scary and a nightmare to deal with, but I communicate with people who have done this and returned to health often.  I suspect your chances are significantly better than the number you wer given.

Medical Oncologists, especially during the first few meetings for some reason paint the bleakest possible scenario, and then back off as the patient improves.  I guess it is to prevent unrealistic expectations, but it is unpleasant at first -- I know. You can do this and come out the other side a winner.

max

 

cchqnetman

Max Former Hodgkins Stage 3 said:

Sorry

David,

I am sorry I guessed correctly: that you would be getting a SCT (stem cell transplant).  This means the MDS was confirmed (and most likely is the cause of the bone tumors).  From what I have read here, a PSA as low as yours seldom to never has localizable bone tumors (i.e., no tumors large enough to be seen on scans).

I never had a SCT, but have been reading about them at the Lymphoma Board for years, since it is a common salvage therapy for people who have relapsed with Hodgkin's and Non-Hodgkin's lymphomas.  I must say that it is HARSH, and the prep time is often measured in months, but it seems you are in no short-term danger; the wait should be of minimal relevance, and is necessary anyway.  Basically, you will do some preliminary chemos to reduce the cancer as far as possible.  It will aslo be determined whether they are going to use your own stem cells (new cells routinely produced in your bone marrow), or get a doner.  Both techniques are common, and about equal in success, but using your own cells reduces GvDS ("Graft versed Donor Syndrome"), in which the body rejects the doner cells, similiar to organ transplantation rejection.  There are many drugs that can treat or overcome GvDS when it occures, however.

I am unfamiliar with MDS, but it is possible that radiation might be used agains the bone tumors, or even substituted for the chemo, I just don't know.  After this initial treatment you will then go in as an impatient for the SCT part itself, which can take a week to several weeks as an impatient. 

I have never heard the "three year median survival time" statistic.   It does not match what I hear at lymphoma at all, in which many patients are in remission for life.   Your  case of PCa seems minor, given your current PSA.  You asked at the other post for the definition of PCa relapse following RT (for men who still have the gland in place), and it is a PSA of Nadir plus 2.0    Technically, you are not there yet, if ever.

I know this has to be scary and a nightmare to deal with, but I communicate with people who have done this and returned to health often.  I suspect your chances are significantly better than the number you wer given.

Medical Oncologists, especially during the first few meetings for some reason paint the bleakest possible scenario, and then back off as the patient improves.  I guess it is to prevent unrealistic expectations, but it is unpleasant at first -- I know. You can do this and come out the other side a winner.

max

 

SCT on Hold

Max,

My SCT is on hold until they determine if the rise in PSA and the results of a bone scan indicate I have metastatic prostate cancer or not.  The median survival time for my MDS is based on several factors including chromosome abnormalities, gene mutations, prior cancer, IPSS-R score (a MDS scoring system), age, and probably some other factor I can't remember off the top of my head.  I have seen the statistic in multiple research documents as well as from my BMT doc.  I have an appointment with a urologist / oncologist tomorrow and hope he will tell me I am cleared for the BMT, i.e., I don't have prostate cancer.  Realistically though I doubt he will tell me that tomorrow.  I suspect he will order more tests. 

 

Thanks for the reply and thoughts

 

David

cchqnetman

Back on track for a SCT

After a little scare and delay because of a possible reoccurrence of prostate cancer I am back on track for a stem cell transplant. My new admit date is 29 March 2016. I wasn't real happy that it is a month away but evidently that is the best the donor could do. They have already told me he is a 20 year old male with O Negative blood (I have O Positive).

At my last doctor's visit I found out I have several gene mutations (TP53, TET2, TET1, PMS2, PML, MSH6, FLT3, EZH2, DNMT3L, DNMT1, and ASXL1). I also had monosomy 7 in 10 out of the 20 cells analyzed in the last biopsy. My doctor said given all of this he puts my success chances at 30% and a median survival time of 3 years if the transplant is successful.

Wishing everyone else the best in their individual journeys.

Cheers

 David

Old Salt

cchqnetman said:

Back on track for a SCT

After a little scare and delay because of a possible reoccurrence of prostate cancer I am back on track for a stem cell transplant. My new admit date is 29 March 2016. I wasn't real happy that it is a month away but evidently that is the best the donor could do. They have already told me he is a 20 year old male with O Negative blood (I have O Positive).

At my last doctor's visit I found out I have several gene mutations (TP53, TET2, TET1, PMS2, PML, MSH6, FLT3, EZH2, DNMT3L, DNMT1, and ASXL1). I also had monosomy 7 in 10 out of the 20 cells analyzed in the last biopsy. My doctor said given all of this he puts my success chances at 30% and a median survival time of 3 years if the transplant is successful.

Wishing everyone else the best in their individual journeys.

Cheers

 David

Wishing you the best

possible outcome of the stem cell transplant.

Max Former Hodgkins Stage 3

Old Salt said:

Wishing you the best

possible outcome of the stem cell transplant.

Wow

David,

With Old Salt I wish you the best in this. Hematological cancers are the only ones that routinely emply SCT that I am immediately aware of. Certainly they are the most common in blood cancers. The ones I have most read about are for relapsed lymphomas. Initially so-called 'neoadjuvant' chemo is used, to best the cancer back, close to undetectable levels. This can take weeks or more. Then, as an inpatient, hyperdose, specialty chemos are given, which more or less burn out the immune system, with the presumption that absolutely all of the cancer is gone.  Then, the new cells are introduced, which begin rebuilding your own system.  This is s most common sequence of events.  It is likely that it is alterable, such as eliminating neoadjuvant' chemo.  The fact that you have a hospiysl admission date already makes me think this is likely.

It is an ingenious, if gruesome, way to attempt cure.

As I wrote before, I read posts from people who have gone through it successfully everyday.   30%, again, is not a number I have ever heard before, but as you suggested, it may be based on genetic factors.  Statistics are complex and nearly impossible to use in a clear manner when anticipating the future.

You will have IV ports and shunts installed.  The actual 'STC devices look about like dialysis machines. SCT involves the transfer of blood products; 'bone marrow' itself is not actually involved.

If you are indeed proven clean of PCa and want a forum more directly focused on your situation, feel invited to the Leukemia Board or write me via the emails here.

max

Will Doran

Best wishes and Prayers

David,

I want to add my Best Wishes and assure you that you are in my Prayers. 

We are all in this fight together.

Peace and God Bless

Love,

Will