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Our Story - Newly Diagnosed


Cher
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Hi Everyone.

Hope you are all doing well. My dad is currently being diagnosed of Advanced Metastatic Prostate Cancer. We live in India, but this website has been immensely helpful in the process of educating myself of every detail I should be aware of.

 

My dad aged 53, is non diabetic, no hypertension, no heart diseases, doesn't smoke/drink. A persistent back pain for few months led to an MRI, which showcased some lesions on the spine. A PET CT was later done and metastatic lesions have been found on parts of the spine/ ribs/ pelvic region and prostate gland enlargement was seen. A bone marrow biopsy was then done, which confirmed metastatic deposits.

The PSA test report = 149

 

Currently they are running Prostate Tumor Markers on the same Bone Marrow Biopsy sample. A prostate biopsy will be later done if required. The urologist performed a rectal exam and is almost sure it is Advanced Met. Prostate Cancer. He says that the cancer seems to be aggressive since its spread to the bones and has also infiltrated into the bone marrow. So he suggested we start the treatment immediately


1) The Urologist tells me there are a few types of injections available but they take atleast 21 days to enter into the body so he recommends we start with Firmagon which enters into the body withing 24-48 hours. (He mentions that Firmagon would achieve the same results as an orchiectomy)

2) He also tells me Firmagon is the costliest of all the injections and suggests we can move to the lesser priced injections later on after the condition is controlled.

3) So my dad has started with Firmagon, 2 shots of 120 mg on the 29th of June. The Urologist says we must take a maintenance shot of 80 mg every 28 days from now. 

 

Next thing on their plan is to wait for the tumor marker results on the bone marrow biopsy, monitor his progress in a week and then start Chemotherapy along with the current Harmone Therapy.

 

Treatments:
29th June 2019: Started Firmagon injections, 2 shots of 120 mg.

Medications:
Ultracet - After Breakfast & After Dinner (Pain Killer)

 

Dad has little pain on the injection site, feels bit tired/sleepy all day. Slight pains in the body when the medicine effect wears off. [After lot of hours of taking the medicine]. Otherwise everything else seems fine.

 

Please feel free to offer any guidance or help based on your knowledge and experience. Currently I am trying to stay strong and be positive and keep fighting. 
 
Thanks,
Cher

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2 hours ago, Cher said:

PSA test report = 149

Hi Cher, if anyone is diagnosed with advanced Pca here the most common initial treatment is ADT, which your dad is getting with firmagon. An RP ( operation to remove the prostate gland ) might be done, depending in what is known about the spread. EBRT ( high energy X-ray external beam radiation ) is also done on PG after beginning ADT which reduces the swollen size of PG to make it a smaller target to allow thinner beams to be used to avoid too much damage to bladder and rectum or bowels. 

Having any operation on your dad's PG might not do much because Pca is widely spread, and it seems only systemic treatment such as chemo or nuclide such as Lu177, or maybe Ac225 would be of any benefit to extend his life.

The ADT on its own does not kill many Pca cells, it just puts them into a kind of sleep where their growth is usually very much slowed down and the Psa should reduce a lot, and some men will have Psa < 0.2 at a month or two after starting ADT when cells are starved from getting testosterone. But some testosterone is made by adrenal glands which is enough to allow some Pca cell growth, and as time goes by the Pca cells change to be able to absorb more of the tiny amount of T in the bloodstream so ADT will not give a cure, and it can only slow down the progress of Pca.

Other drugs such as abiraterone will shut down the T production in adrenal gland and the T production that the Pca cells learn to make in themselves. Because of the advanced Pca in bones and bone marrow, you may find chemo may not work very well and to get a better picture of the status of all mets you should consider PsMa Ga68 Pet/CTscan and then consider Lu177 because I have heard that is available in India. 

 

I was diagnosed in 2009, and have had ADT since then and chemo did not work but 4 injections of Lu177 between last Nov to April has reduced Psa from 25 to 1.6 about 3 weeks ago, and seems like a good result but Pca will find a way of growing back up again so more treatment will be used.

I'm 72, and at some point it will be futile to continue more treatment so I have to be prepared to not exist anymore. I am sure I won't be worried about anything after that. But life is good while I have it.

 

I don't know what Lu177 costs in India, but its not cheap here in Australia where I paid usd $27,000 for the 4 Lu177 injections, and I've had 3 PsMa Ga68 scans so far during this treatment which cost usd $1,500.

Our Medicare system is good which pays for many things, but it did not pay 1cent for the Lu177 or scans.

Chemo made my Psa rise from 12 to 36, then it fell to 25, then up to 50 after 4 infusions. Doctor said it had failed and he suspected it would fail. So I switched to Lu177. Chemo might cause Psa to rise within first month but then Psa should fall and after 3 infusions it should be lower than at beginning and just keep going lower as the Pca cells are killed. "SHOULD" is a terrible word used by doctors because they keep saying "this should work" and then we find it has not worked, and the Pca finds a way of surviving and becoming a threat again.

After diagnosis I had a very good quality of life for nearly 10 years until recently when  I have begun to have trouble with one hip joint, probably from arthritis , and maybe that was caused  by side effect of EBRT rays going through each hip to get to PG. 

Good luck with your dad's fight,

Patrick Turner. 

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Dear Cher

 

best wishes to you and your dad.

 

My story is similar but not identical. I am undergoing ADT with Zolodex for stage IV PC. I had a radical prostatectomy, followed by radiation treatment, and chemotherapy. (The chemo overlapped with the ADT as an adjunct treatment; this is similar to what your dad will progress to.) 

 

From talking to other patients, and from what I have been advised by medical professionals, it seems that the side effects of chemotherapy vary a great deal among individuals. So he will have to see how it affects him. It  may have severe side effects or more moderate ones. Most of the latter are controllable. (I was fortunate in that they did not affect me very much, except immediately after each treatment.) But to repeat, there is considerable difference between individuals undergoing chemotherapy as to in which ways, and how severely, it affects them.  

 

I found a link to the drug that you mentioned:  https://www.eviq.org.au/medical-oncology/urogenital/prostate/818-prostate-locally-advanced-or-metastatic-degare . It is from a reliable source. Under "Clinical information", it advocates exercise. Exercise is one of the best ways in which your dad can enhance the effects of whatever drug or drugs he is taking. The tumours "like" a state in which the patient is sedentary. They will "dislike" one in which he is active, and his blood is circulating and bathing them in the cancer-fighting compounds that he is taking. Exercise will also help maintain his bone density, helping him avoid fractures. Both my oncologist and my urologist recommend exercise to their patients. From what you are saying, he may not feel up to it. Try to encourage him to do even gentle exercise such as walking. Ideally you would work with an exercise physiologist who would consult with your dad's urologist and make him up an exercise program that is tailored to his capabilities, and avoids stressing areas that are potentially vulnerable. This is particularly important given that he has bone metastases. (In Australia, an exercise physiologist is someone with a background in physiotherapy, but who also has an master's degree in exercise physiology. They tend to specialise in the treatment of particular conditions such as cancer.)

 

In addition to enhancing the effects of your dad's treatment, exercise will also help his mood and general outlook, and his sleep. It is something that he can do for himself, rather than just being a passive recipient of treatments. So it will give him more of a feeling of agency and empowerment. There are very few downsides, and no side effects or interactions with any of his treatments! If he can get into an exercise class run by an exercise physiologist, this will give him some social interaction as well. My exercise class often goes out for lunch afterwards. It can be very informative exchanging information with other PC patients, and just chatting with people who have been through what I have experienced. If he enjoys this, it could also be something that he looks forward to. So it potentially has multiple benefits. 

 

Being treated for MPC is tough psychologically. Having cancer is pretty scary, and the uncertainty into which you have all been plunged is quite wearing. We all like to feel as if we are in control of our lives. Cancer explodes that illusion very suddenly. So it will not be surprising if he experiences sadness and low mood, even depression. Men who are in the demographic frame for MPC often have not been encouraged to express their feelings, so may need some encouragement to do so. There is pressure on cancer patients to be positive all the time. In my view, this is both unrealistic and harmful. No-one can be expected to feel constantly positive; there is no light without darkness. People who are only rewarded for expressing positive feelings will just not talk about any sadness or anxiety they may experience. So these "negative" feelings just get driven underground. If you can encourage your dad to share his feelings with you (and other family members), and listen in a non-judgmental way, whatever those feelings might be, you will be doing him a further great service. In my experience, no specialist is comfortable addressing the emotional health of cancer patients.

 

Your dad is lucky to have you as a companion on his cancer journey. You need support as well so you can go on helping him. Don't be afraid to ask for it.

 

Best regards

Guy 

 

 

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Hi Patrick and Guy, thanks for responding, I feel bit relieved to know I can always seek help. I wish you both success in your on-going treatments. I really appreciate the enthusiasm with which each of you fight against all odds. 🙂

 

I am glad to know that starting Harmone Therapy via Firmagon was the right decision at this stage.

 

Treatment Options: I understand we might have two options here, do correct me if am wrong.

1) Go with Chemotherapy + ADT (Firmagon)

--or--

2) Go with Nuclide Medication (Ac-225 / Lu177) + ADT (Firmagon)

 

Questions to Urologist:
- I shall ask my Urologist if we can get the PsMa Ga68 Pet/CTscan done and IF nuclide medication (Ac-225 / Lu177) is a better option over chemotherapy ?
- I shall also ask for an exercise plan.

 

Additionally I wish to know if there is any order to be followed here? Like can a person start chemo, and if it doesn't work then switch to Lu177 / Ac-225. Do people pre-treted with Chemo respond well to Lu177 / Ac-225? I ask this cause I am concerned that the doctors might first ask us to try Chemotherapy + ADT.

 

Best,

Cher

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