MD Anderson today : After finishing my... - Advanced Prostate...

Advanced Prostate Cancer

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MD Anderson today

joekaty profile image
24 Replies

After finishing my 9th round of taxotere- at Tx Oncology in Dallas- I traveled yesterday with my wife to Houston to see Dr. Corn. We have been here since 8am and it has been excellent so far. He is recommending I stop chemo and monitor PSA for a while, and take action when PSA levels begin to rise. Will continue Lupron and Xgeva shots. I am preparing for bone scan and then CT, after which Dr Corn will co suit with his colleagues, so I suppose this isn’t his final recommendation just yet but I think unless any results are drastically unexpected it will be. My PSA is down from 556 to 2.6. Most lymph nodes have resolved according to my last scan. Bone marrow progress is unknown but based on blood work probably vastly improved, my last CT did show bone lesions throughout pelvis but Dr is unsure whether they were previously unseen and healing, or new. He believes the former. Will see what MDA Dr’a think. Has been a good experience here. Anyone else come here for treatment? Any other feedback on my status/treatment plan appreciated as well. Thanks to you all!

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joekaty
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JamesAtlanta profile image
JamesAtlanta

I go to MD Anderson. They are great. They are the people who help ‘write the book’ on PCa treatment. You are in good hands there.

Please keep us posted on your progress!

Best,

James

joekaty profile image
joekaty in reply toJamesAtlanta

Thank you! Will do! It was a 13 hour day but well worth it!

BigM62 profile image
BigM62

Im also on #9 chemo here in Dallas. I have not gone down to MD Anderson yet, but plan to soon for my 2nd opinion in what comes next. Im currently PSA undetectable, but bone mets are just stable rather than resolving. Just today my MO said he thought we might need to stop chemo rounds soon, so i need to make an appointment. How ling did you have to wait for an opening? Did you just call the general number?

joekaty profile image
joekaty in reply toBigM62

After today I can say I highly recommend and in retrospect I would start the process sooner rather than later. I waited four weeks. I did not call the general number but had a physician referral. Are you at Tx Oncology? I am there (Presby Dallas) and followed by Dr Luu who is excellent -but today I realized the difference between a general oncologist and one who specializes in only prostate. It was significant. I didn’t word that clearly enough in my post- at diagnosis I did not show any bone mets. My latest CT showed extensive diffuse lesions throughout my pelvis. However, Dr Luu said that from a CT he doesn’t know whether they were there before and not seen- and are just showing up now because they are healing- or whether they are new. I am eager to hear what Dr Corn at MD says about that.

BigM62 profile image
BigM62 in reply tojoekaty

Im getting treated at Rena Tarbet Cancer Center associates in mckinny. Its a small office, but dr khan is 80+, brilliant, and i speak personally to him weekly. He is careful , thorough , and personal. Exactly what i needed to get me started in this fight. But i will go down to Houston to start planning what comes next after chemo.

joekaty profile image
joekaty in reply toBigM62

That’s great. If you have any questions about MDA feel free to shoot me a message!

BigM62 profile image
BigM62

Also, what blood markers do they look at for indicating marrow progress? I have not heard of this.

joekaty profile image
joekaty in reply toBigM62

I did have bone marrow involvement at diagnosis. I was diagnosed after god my to the ER at Presby, ended up with a 3 week stay there in August receiving blood and plasma transfusions due to a condition known as “DIC” Disseminated Intravascular Coagulation. I almost did not survive and that was due to cancer having destroyed much of my bone marrow rendering me unable to produce red blood cells. That’s a somewhat simplistic explanation but it’s a complex condition. They actually thought I had leukemia or lymphoma based on my presentation (DIC is more common in those cancers or in sepsis) before my PSA came back at 556. Due to that mess- I have blood coagulation tests done semi-regularly. Any change in those, decrease in my platelets or fibrinogen would indicate an increase in the cancer burden in my marrow/ though frankly I would probably know first because I would start bleeding. What I experienced was extremely rare. I actually signed a consent for them to do a case study on me. My first taxotere treatment was in ICU in between blood and plasma transfusions and it saved my life. I have wondered how many others have marrow involvement. I’d be interested to here their experiences.

Excellent report. Excellent facility. Excellent staff. I go two blocks away to Hermann Memorial; prior to that Methodist. I follow the Doctor..... Though I am surprised about the re-evaluation with a 2.6 threshold. Keep kicking the bastard.

Gourd Dancer

joekaty profile image
joekaty in reply to

I’m still pretty new to all of this so curious- by “re-evaluation” surprised that they are doing new scans because my PSA is so low or...? Appreciate any feedback- I know I have a lot to learn!

in reply tojoekaty

Joe, I chuckled when I read this. No disrespect intended. Excellent question. I had four Nuclear Bone and soft tissue CT Scans within a year of initial diagnosis. Then, 17 sets of scans from 2004 to 2010. And a final set of scans in November 2016. The 21 Scans helped to aid in my treatment and analysis as to what was going on my important is that it creates a record of your disease and it's progression through the years IMHO, too many have no idea how their disease is progressing and uts a crap shoot for future treatment. Kind like at starting over at square 3 instead of progressing past square 8 down the road

Also, note that my primary Radiation Oncologist is Brian Butler at Methodist (also a Professor and Researcher) and he got me to a fellow Professor and Researcher, Medical Oncologist Robert Amato who was at Methodist and Baylor College of Medicine then, and now Hermann Memorial and the University of Texas Medicine School st the Health Svience Center. Both had previously been at MD Anderson and the University of Texas Medical School. Both also are considered Prostate Cancer Specialist.

You are in good hands at MD Anderson - all of these guys know each other and sit on various Texas Medical Center committees.

GD

eggraj8 profile image
eggraj8

I am at MSK and can’t comment on Anderson. I just finished infusion 18 of Docetaxel and Carboplatin. The Chemo along with Degarelix seems to be keeping my cancer in check. I also take XGEVA. I do not expect to stop this treatment until it no longer is effective. My cancer is in prostate liver lungs and bones

joekaty profile image
joekaty in reply toeggraj8

Wow- 18 infusions! Not familiar with carboplatin. I had degarelix when hospitalized but since then not- just Lupron and Xgeva and (until now) docetaxel. Lots to learn for me here!

scarlino profile image
scarlino

Been going there since 2013. Dr. Corn is not my doc (I see Zurita), but they are a tremendous group of people. Do a great deal of research and training. I have confidence in them.

joekaty profile image
joekaty in reply toscarlino

Very good to hear!

sfboy58 profile image
sfboy58

I am also in Dallas and being treated at UTSW, Dr Courtney. I also have an Oncologist at MD Anderson who I consult with on a regular basis. I have advanced stage 4 PC and failed all the standard treatments. I plan to start a Phase 1 trial at MD Anderson in a few weeks that combines Yervoy (immunotherapy drug) with a chemo drug.

joekaty profile image
joekaty in reply tosfboy58

Glad you are getting into a trial! That’s what I’m waiting on. Have been rejected for all I have applied for so far but hoping being hooked in with MDA will help that.

Thomcu profile image
Thomcu

Sounds like you're on a good roll, I think it's great to hear good reports and you couldn't be under better care.

joekaty profile image
joekaty in reply toThomcu

Hope so!

Cmdrdata profile image
Cmdrdata

Joe, I too lived in Dallas area and have been going to Houston for my treatment since 2010. My doctor is R. Amato, a state of the art researcher and doctor, used to work at MDA, but hired by Memorial Hermann as director of Cancer Center. I’d recommend him, but unfortunately, he himself had a serious illness and have not been 100% in his ability to see his existing patients. I’d say try Dr. Brian Butler at Methodist Houston, who is also active in PC research (PARP Inhibitors). MDA is renowned for cancer, but in my opinion, getting the RIGHT doctor to treat you is paramount. Even at MHCC, the doctors I met while Dr. A is out is not the same caliber. They are just cookie cutter doctors.

joekaty profile image
joekaty in reply toCmdrdata

I hear that- mainly why I waited until now to go to MDA. I really feel comfortable with my onc in Dallas. However, I really liked Dr Corn and feel confident about his team.

joekaty profile image
joekaty in reply toCmdrdata

Wanted to let you know- after my follow up conversation with Dr Corn I tried getting into Dr Amato and was told he was not taking new patients. Glad you are in with him and will look at Dr Butler now!

Nice to know yu are having a good experience at the MD Anderson.

Perhaps you should discuss with your doctor the possibility of doing a GA 68 PSMA PET?CT scan (UCLA has a trial)and if positive try to enter in the Lutetium 177 PSMA trial at UCLA or go to Germany for this treatment.

I had a Ga 68 PSMA PET/CT in 2016 and I had a multitude of metastasis in the pelvis and abdomen lymp nodes. I went into ADT and then I went to Munich. I was treated once with the LU 177 and the metastasis were gone. PSA is 0.09, down from 10. No metastasis.

ncbi.nlm.nih.gov/pmc/articl...

Anything, please let me know

Best

Raul

joekaty profile image
joekaty in reply to

Thank you Raul

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