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Dattoli

daytona19
Posts: 54
Joined: Sep 2014

Hl i V Gama and panel,

Went to Sand lake Imaging and had several scans done. I was going to have one done using ferriheme but the FDA decided it was not safe to use. Dr. Bravo felt that using the regular c11 scans

he could see all the spots ( I hope so ). They found eight spots on the lymph nodes in my midsection and one in my prostate bed area but none in my bones.

Went to Dr. Dattoli June 23th and he did so more tests and wanted to do Fifty radiation treatments  and at the end put a few seeds in the spot in my prostate bed.He said his machines could hit a spot the size of a pinhead.

I am on my 38th treatment and besides the radiation he has me on several medicines including hormone pills, estradiol patch, Trestar and prolia shots. 

My side effects so far are I am tired and have a queasy stomach and my testosterone is 30.

Dr. Dattoli has patients from all over the world includind several from Lisbon. His web is https://portal.dattoli.com 

His goal is to make the cancer chronic ont fatal. 10 years and the battle goes on.

I also found a pill, Myrbetriq, that seems to help with the incontenence. I didn't mean to send that first section. hit the wrong button

daytona19

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Hi Daytona,

I am pleased to read about the developments of your treatment. It follows our exchanged posts of April in your thread (http://csn.cancer.org/node/291869), talking about image studies and oligometastases.

Your physicians, the team Bravo & Dattoli, have been involved in the treatment of oligometastases patients in the past two years using feraheme to detect cancer spots. This process has been applauded by Dr. Myers who believes that systemic patients may benefit and aspire to cure if cancer is found in a few numbers of lymph nodes. The contrast Feraheme is a substitute of the famous Combidex used in the past in Holland but now obsolete. You surprised me when you say that Bravo now uses C11 choline. (Medicine is in constant revolution and improvement).

Your treatment seems to be complete. In fact I believe that the concomitant hormonal protocol has been recommended by Myers. The estradiol patches were recommended to provide some sort of stable energy in your system and the bisphosphonate Prolia is to protect any bone deterioration. The newer drug for overactive bladders, Mirabegron (sold under the name of Myrbetriq, Betmiga, etc) may cause stomach pain and nausea.
Becoming tired is natural with such medicine combination but your stomach symptoms (and any other) should be discussed the soonest with your doctor. All those medications cause side effects and may interact with each other and with the food you take. Stabilizing the situation is a must do thing. Dr. Myers is a specialist and can tell what may be the cause (if any), and may recommend a substitute equally effective. Interestingly, recently I start having sort of overactive bladder symptoms (peeing four times at night) and tried to control with the traditional Trospium chloride with no effect. I am changing to Mirabegron.

I wonder about the length of the period that you will be on the drugs. Is it to be continued after the radiation?

I hope that all ends in success.

Best wishes and luck.

VGama

 

daytona19
Posts: 54
Joined: Sep 2014

Hi V Gama,

My PSA is dropping, down to 1.1, but the nurse said that because of the radiation it won't drop much more till that stops. Something to do with it cause the cells acting up. I will go back for a Trelstar shot in Oct. and a prolia shot 3 months later. I will stay on Bicalutamide,finasteride and estradiol patch till my PSA drops below acceptable level. The nurse said even after that I might need to stay on finasteride for maintenance. When I meet with the Dr. at the end I will update you on what he says.

daytona19

daytona19
Posts: 54
Joined: Sep 2014

Hi V Gama and panel,

I had my last radiation treatment on Wednesdy, number 50. Hope they got it all as i would want to treat other spots. Went to Sarasota memorial on Thursday and Dr. Dattoli put seeds into a nodule in my prostate bed that was cancerous. Stayed in the hospital overnight and the next morning when they took out the catheter I was leaking uncontrolable. According to the Dr. that is normal and should last only 2 days. I hope so if not I will run out of clothes and pads.

Additional pills i am taking to help with the symptoms:

Flowmax one a night. This smoothes out the wall of the blatter to control urinary difficulties.

Cipro for infection.

Medrol Dose pack. Anti inflammatory

Ibuprofen to be used for 6 weeks after I stop Medrol.

AZO standard cranberry for urinary difficulties.

Anusol HC suppositories which i am trying to find something to replace it as it is $500. It is for rectal irritation and I don't have any yet.

I have to stop the Mybetriq for 3 months as  it interfers with some of these drugs. The battle goes on. I met two couples from England that heard about Dr. Dattoli from friends.

daytona19    

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

 

Daytona19

I read your comments posted to me in a thread of another member, regarding your elevated PSA. I think it better you keep your information together otherwise nobody can follow your story or reply to you with better answers. Here is the copy of your last entry:

PSA 710

Hi V.G.,I didn't how to reach you so I hooked on the end of this message. I have been having issues with my stomach area so I went to  G I Dr.and my liver numbers where up. I also went to Dattoli and they did tests and a blood test in a weeks time it went from 154 to 710. I am scheduled for Sand Lake imagining for Oct. 13 and 14. I  hate to wait that long but that is the first time I can get in.

It is a fact that a PSA=710 is very high and you need to get answers the soonest from your doctors. But I wonder your PSA histology since the last test you have shared here in August 30, 2015 of PSA=1.1 (this thread). The liver is almost all the times affected by the drugs and supplements we take. In particular guys that are always on powerful drugs which may interact with each other. We have discussed befeore (read above comments) about such interaction and on the side effects of Myrbetriq related to stomach and nausea issues. I hope Dattoli has an answer for you.

Are you taking any holistic drugs/treatment?

Unfortunately the search engine of this CSN forum is useless when trying to find the entries by a member and I found nothing about your case. Via Google I managed to find some where we can read part of your story and list of treatments. Here are the links I have found;

SEP2014: http://csn.cancer.org/node/287947

JAN2015: http://csn.cancer.org/node/291869

APR2015: http://csn.cancer.org/node/293838

MAY2015: https://csn.cancer.org/node/294209

AUG2015: http://csn.cancer.org/node/296402

I recommend you to keep them together when posting.

Best wishes for improvements,

VGama

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Please see above.

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

I am not really good on the computer but i will try to keep you up to date. I have had my 3rd taxotere and my 1st cetaximab on Thursday and it took 4 days to recover. My liver numbers are better and I didn't get tested for PSA. My last one was after only after one taxotere session and it was 1368. The chemo treats my liver but that is what is going to get in  the end. The cetaximab is in phrase 2 testing and it is given weekly The taxotere is every 3 weeks. I take gabapentin for numbness in for feet and it works. This has been a 12 year battle and in the past I thought I had beat it but it keeps changing how it attacks.

I will get a new PSA number but the biggest concern is the liver.

daytona19 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Daytona19

I am sorry for the condition. Chemo causes those nasty effects and the liver suffers. The PSA goes up because the cancer is already independent of the blockades done to avoid the androgens. It is producing them itself. Your best step is to avoid therapies that causes you worse conditions. You need to be careful with anemia. That would drastically pull you down. I wonder if you are experiencing pain.

There is a treatment provided in several clinics in Germany for systemic cases (cancer at many places in the body) which you could discuss in your next meeting. This is a radionuclide therapy named Lu-177-PSMA-617. It is recommended in castration resistant prostate cancer but it should apply to you even if you have done chemotherapy. Here are links you should copy and show to the doctors;

http://jnm.snmjournals.org/content/early/2016/03/16/jnumed.115.171397.full.pdf

http://ejnmmires.springeropen.com/articles/10.1186/s13550-015-0114-2

In fact this is something I would be aiming if my case gets worse, however I am confronting now with kidney problem (insuficiency) and I'm not sure if such condition is permitted in this type of therapy.

Try your best.

Sincerely

VG

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

I had my 4th taxotere last week and I also got 2 shots of neupagen for low WBC 2 weeks ago and got 1 shot of neulasta last week for the same thing. It seem that the side effects of the cetaximab are worst than the taxotere. Really all these things I am doing is trying to buy time. I am still getting injections of firmagon and xgeva monthly and taking zytiga. I do feel better than I  did before I started chemo. I had stomach problems and had no energy. Not sure what that means? I have not had my PSA numbers since after the 2nd taxotere which was 1407 so i hope it has started to go down but my liver numbers are better.

I hope your bandit stays away from you.

daytona19 

 

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Daytona19

I am glad for reading that you feel better with the newer drugs. They make part of the chemo protocol. Immune system is affected and needs some boosting to avoid inflammation. I just wonder if you could stop Xgeva and have it intermittently. Many of the side effects are caused by interaction with this drug. You need to inquire with your doctor and if feasible request for a change in the protocol.
I wonder if you have informed them about my last post on LU177. This is a drug for systemic patients (our cases) and go further than just buying time. They offer cure in advanced cases. LU177 is now in clinical trials at USA. Do your investigation with your physicians.

The bandit in me decided to hibernate. My PSA tests have plateaued at PSA=1.5 ng/ml. Now I am confronted with kidney issues. You should also have your numbers checked and care with proper diets. It may be the best way to assure ua more time.

I hope your PSA goes down; however, you need to think that quality of life is primer to a low PSA.

Best wishes for improvements.

VG

daytona19
Posts: 54
Joined: Sep 2014

Hi VG and panel,

Went to Moffitt yesterday and got blood results. My PSA went from 1421 to 780 and all my liver numbers are better. Dr. Fishman has me doing 2 more sessions of taxotere and cetaximab. The side effects are my face peeling and sores on my arms. Don't know what will happen but it could give me more time. I asked him if any studies being done on any new  Immunology drugs. He said that there was meeting going on in Orlando in the next few weeks. hope it might be something to help us as I think it is going to be the cure.

daytona19 

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

I will ask him about LU177 and the Xgeva. My ALK went from 2790 in Oct. to 357 now. My AST went from 298 to  201 ALT went from 62 to 37. When I find about anything on the conference in Orlando i will let you know.

daytona19

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Daytona,

I am surprised for the level of alkaline phosphatase (ALK/ALP). Normal levels are must lower in the range of 44 to 147 IU/L. What are the units used in your lab?
AST and ALT are much better close to normal. Infection seems being eliminated but the bone loss (as verified by ALK) is still adamant.

The numbers are lower signifying greater improvements in your general health. The lower PSA adds to the great news.

Let's celebrate.

VG

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

That ALK number in Oct. was 2790 so whatever causes it to lower to 348 I guess the chemo is lowering it. It has to do with the liver and i think it makes my food taste funny. I still have 2 more sessions of taxotere and Cetaximab. When I am done with that i will get a scan done?

I am pleased that my PSA is going down don't know how low  it will go?  

I looked into LU177 and it is in Germany and Holland and has been for a few years. I heard there a new Immunology drug coming out but not sure what it is.

daytona19

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Daytona,

I wonder if you are referring to the  "chemoimmunotherapy" approach. This has been in lab studies with great efficacy but I am not aware of any clinical study in humans. The treatment combines an attack on immune B cells plus chemo (oxaliplain). B cells are responsible for the chemo failure in killing PCa.

I admire your efforts in fighting the bandit, but you need to consider the quality of life. How is it? Can you eat and drink what you like or are there restrictions?

I have been diagnosed with CKD (renal insufficiency) and was told that cannot use contrast agents in my image exams. What about chemo therapy, do you know if CKD restricts any chemo drug? Please ask your doctor next time.

Best wishes for your success.

VG

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

I am still fighting but I am afraid that the clock is running out. I might still get 2 years but no one knows. The PSA is dropping so that helps. I thought I had it beat until my results from the scans in Oct. trying to hang in for my family.

 

daytona19

daytona19
Posts: 54
Joined: Sep 2014

Hi VG,

If my taxotere stops working I guess I can go to Jevtana? Do you anyone that has one that? And did it give them more time?

daytona19

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

Daytona19,

Chemotherapy can be combined with other meds but you need firstly to end the present protocol. Chemo, like radiation, is planned for a certain volume (grays in radiotherapy), that are divided into fractions (number of infusions). Jetvana works similarly to Taxotere as they are microtubule inhibitors. These chemo (similarly to radiotherapy) interferes in the division of cells not allowing the cancerous to proliferate and survive. The results of their action depends on the life cycle of the cell, therefore the infusions last a period corresponding to the period of cells cycle (2 to 6 months in case of prostatic cells).

In my previous posts I have insisted with you to consider your quality of life. Your body (affected benign cells) needs time to recuperate from the chemo blow, otherwise you will deteriorate fast. Such period away from chemo effects can assure you longer survival. Discuss the matter with your caring team of physicians. Be careful with anemia.

Thinking of you.

VG 

daytona19
Posts: 54
Joined: Sep 2014

Hi V.G. and panel

I have only had one session of Cetuximab on March 8 and that was all for the Month. Mainly because i have been so tired. On March 22 I had gained 20 lbs from Ascites and swollen ankles and they put me in the hospital for 3 days. They drained fluid out of my midsection and lungs and put me on bumex which has not really helped but i have not gained weight.

I am still tired and my Dr wants me to see him on the 5th hopefully to change my program. I don't think he is ready to give up but will find out. It has been a long battle and I am trying to stay alive for as long as I can for my family. 

That you for all your advice.

daytona19

 

Max Former Hodgkins Stage 3's picture
Max Former Hodg...
Posts: 3207
Joined: May 2012

I was thinking yesterday that you had not written in a bit Daytona.

I hope the fluid retention can be addressed. Please share what the doctor relates.

max

VascodaGama's picture
VascodaGama
Posts: 2938
Joined: Nov 2010

I also want you alive. You are a fighter and I like you very much. Hope this period without infusions gets you out of fatigue. I believe your doctors being vigilant on your other boddy functions. Liver may be suffering for digesting so much chemo. I appreciate your efforts to continuously report on symptoms and the way to treat them, as it surely is helping many reading your progress. If you recall, we talked about Mirabegrom (for urination frequency) which is now helping me to sleep better. I wonder about the PSA. Is it been used to check chemo results?

Best wishes for improvements.

VG

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