After dad's original diagnosis in October 2017 of advanced prostate cancer with spread to seminal vesicles and pubic bone he was put on ADT and offered early chemo. His Gleasons score is 8 and PSA 48. (I wrote about this in my last post).
Fast forward to Jan 2018 and his PSA is at 12 but his new scans show that it's now spread to lower part of the lungs and some lymph nodes. This is totally not the news we were expecting as we thought the last PSA results meant he's responding well to the ADT.
He starts 6 rounds of chemo (docetaxel)on 29th Jan.
We are in the uk, dad is being treated at Queens hospital in Romford Essex.
I'm not really sure what I'm asking but any advice would be great, especially from anyone in a similar position.
I can't understand why it's spread like wildfire in such a short amount of time? I thought the ADT would control it?
I wasn't with my dad when he received the news today as he was called into see the doctor unexpectedly.
He is strong and has taken it well but I'm so scared for him.
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Clarejb
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It looks to me like your dad has a very aggressive form of Prostate cancer. I am too and have just had my sixth round of docetaxel ChemoTherapy yesterday and a timed Nulasta injection today. So far the Docetaxel has worked good and has lowered my PSA down to 2.04. My lymph nodes have returned to normal. I am still receiving my Lupron injections along with the docetaxel I have 4 more rounds to go. Don't give up. I have been living with this for 14 years now and plan to live many more.
Thanks for your reply and support Dennis. I am glad to hear you are getting good results, it gives me hope for my dad. It's just come as such a shock as my dad says that aside from some minor side effects of ADT he feels great. I just hope that he gets good results from the chemo
Just a quick addition to my message. I had symptoms only during Oct 2014. The Oncologists reckoned I was so far advanced that the PCa had been spreading for 3/4 years before letting me know it was there. Should have charged rent!
Hi Dennis, my name is Lynn. My husband went almost nine years did pretty well, this past year cancer came back very aggressive!! Tumor blocked kidney tubes.
Twelve rounds of docetaxel chemo, radiation. Now after all that cancer came back in three lymph nodes. Going tomorrow to have the large LN removed?
Don't know what treatment will be next?
Oncologist mentioned targeted radiation.?
Best wishes and prayers coming your way!! Sincerely, Lynn
My father has a very similar situation but not to lungs. Very advanced Neuroendocrine PCA. Keep positive and as you can see there are so many that are going through this. We are hear to support you. Many hugs.
Thank you for your reply, I am sorry to hear that your father is also in the same situation. The onc didn't mention the type of cancer but from what you've said, it sounds to be the same. I will find out. Thank you for your support.
There are some rare forms of prostate cancer that tend to go to the lungs more often than “regular” prostate cancer. Did his doctors discuss what type of cancer he has?
If he is not on Zytiga you may want to inquire about it. Zytiga has shown remarkable success in reducing mets. Also, I wonder if radiation may help (they radiated my pelvic area to get the mets there).
Sorry that I can not offer more advice. However we are all pulling for you and your father. Please know that your family is not alone in this struggle. We are with you!
Thank you for your reply and support. Dad was called in to see the onc quite unexpectedly when he went to sign a letter at the hospital. Unfortunately I wasn't with him and so couldn't ask any questions. I think my dad just went into shock mode and didn't ask many questions so is unsure what type of PCa it is but I am going to find out. I asked about zytiga at the last appointment but the onc said it was unavailable to him as a first line treatment (we are in the uk). It's just so hard to believe these result when my dad looks and feels so well.
Thanks so much for your response, hope you are doing well.
Yes, the recent news sounded bad, but there are many treatments for your Dad to regain control of his cancer! I am not a doctor, but since it has metastasized into his lungs, I wonder if he needs an additional chemo drug added to Docetaxel?
I have been in this battle for 5 1/2 years (please see bio for treatment history).
In my case, the PCa moved into my liver, so I just completed 6 cycles of a Docetaxel/Carboplatin chemo combo.
Docetaxel can cause peripheral neuropathy or tingling in your hands and feet, which may be temporary or permanent. To mitigate it, my Med Onc recommended daily oral 100mg B6. I also iced my hands and feet for the duration of the Docetaxel infusion.
My Med Onc also managed side effects in the following ways:
1. Oral steroid the day before, the day of, and the day after infusion.
2. Infusion of Aloxi before any chemo drugs. It prevents nausea and it worked.
3. If getting Neulasta to boost white blood cells, which I received with an On Body Injector, took Claritin beginning the day before infusion for 6 days. Purpose was to prevent bone pain from Neulasta.
4. Use Biotene products for mouth and teeth. Chemo attacks fast growing cells and does not discriminate between cancer and others. Your Dad's mouth may take a beating.
5. The Mayo Clinic did a trial of American Wisconsin ginseng to moderate fatigue in cancer patients. Google it for details. I have taken it during the duration of my chemo. Has it helped--don't know, but I figured that it could not hurt.
Attitude matters. Does your Dad have access to a prostate cancer support group? He needs a support group of family, friends, and his medical team.
Thank you so much for your incredibly detailed response, there are lots of great tips that will help my dad prepare for the chemo. I know he already has a prescription for the oral steroid. I will buy the biotene products for him and need to talk to him about icing hands/feet and some of the other points you have mentioned.
He isn't part of a support group as such, I've tried to get him to join but he isn't too keen. He does have a very good group of close friends who have been very supportive with one of them also having just been through chemo. He is generally very positive and rarely gets down in the dumps, I just hope he can maintain his positivity once chemo gets underway.
Thank you so much for your advice and support. I hope that your treatment continues to give you great results.
For the past 5 1/2 years I have been treated by Dr. Vasily Assikis of the Piedmont Cancer Institute. He is located in the Piedmont West building at I-75 and Howell Mill Road.
Great manner and he is current on all treatments for advanced prostate cancer. Piedmont Imaging is in the same building and I have had an Axumin PET/CT and numerous MRIs there. Always very professional.
For my most recent 6 cycles of chemo, I had a port implanted at Piedmont Hospital and the chemo infusions at Piedmont West under Dr. Assikis's direction.
Hi, my name is Lynn, hang in there, I know the feeling well of being scared. My husband also has stage four PC did pretty well Almost nine years now of treatments, operations etc.cancer came back this past year with a vengeance. Now in three lymph nodes, we go this Friday the19th to have the larger lymph node removed. I was to told there are still many treatments at this point.
there will be many treatments for your Dad too!! Please know that I'm sending best wishes and prayers for your Dad.
Thank you for your kind message. Its good to know that your husband has done well with treatments. It is so scary because you just don't know what path the cancer is going to take and from having relatively good news last week that his PSA has gone down considerably to then finding out yesterday that the cancer has spread throws up a lot of questions. I wonder if it had already spread when he was first diagnosed and has only just been picked up at the last scan (it was done at a different hospital) or if it really has spread like wildfire in the last 3 months. I guess we will never know.
All the best to you and your husband Lynn, I am thinking of you and hope that that your husbands op goes smoothly on the 19th.
Hi Clare, I'm David from Twickenham treated mainly at Charing Cross Hospital in London. Dxd Oct 2014 with Stage 4 incurable.PSA was 167 rose in 3 weeks to 200. Bone scans showed 40+ tumours, MRI showed pelvic girdle lymphs 'eaten'. No surgery possible nor radiation. 8 months chemo 11 months after dxd , ADT concurrent. Now also Zytiga. Post chemo PSA with Zytiga 0.05. All tumours gone given run of new scans. Obviously have other side effects but no worries, tomorrow another day. Age 71. Let us all know how dad progresses, I am happy to chat anytime am home with dog most days and wife keeps me in check - she's a nurse but not for nursing me, just for bullying me!
Thanks for your reply, it really gives me hope that my dad can also get good results from his treatment. From what you've written you seem to be doing really well and are around about the same age as my dad. I will definitely be in touch if thats ok. I have had a lot of really helpful responses/advice from men in the USA but treatments seem to be slightly different so its really great to be able to chat to someone in the UK and not too far away (we live in Essex).
Thanks again and all the best to you and your family x
This is from my post of yesterday Wednesday 01/17/2018 USA New York time. I don't know if it's relevant to your Dad's situation, but here it is for what it's worth. (I was trying to address a women's concern regarding her children after her Husband lost his battle with Pca. Her son especially, since he had a melanoma which was removed).
QUOTE: Besides my Pca I also have stage IV lung cancer. Two years ago I had a Melanoma on my neck which they removed (stage IV). Well a year ago they discovered that I had a Melanoma on my lung (stage !V - a wild Melanoma). I am being treated for the lung cancer with Keytruda ($30.000 per treatment 15 so far) at MSKCC in New York City. CT scans revealed that the tumor was reduced in half and then half again, so apparently it's working. I go for a scan in two weeks to see what's happening. So please (i know he's doing so) have your son on top of his situation. BTW I saw my Pca oncologist last week and asked him if the Keytruda I'm taking for my Lung is affecting (in a good way) my Pca. He said no.": UNQUOTE
Firstly, I just want to say that I am really grateful for sharing your story. I also wish you the best with your treatment, from what you've written you seem to be having very good results.
The onc told my dad that its prostate cancer that has metastasized to the lung. I am really hoping its not lung cancer in addition to the prostate cancer. Not sure how much more bad news any of us can take right now.
All the best to you and I hope that you continue to keep getting good results from your treatment x
Thanks for your response and advice. My dad has been vegetarian for a number of years but perhaps it's time for him to take it a step further now. I will take a look at your other posts
take care. Hang in there!! There are so many treatments today, your Dad will be just fine!!! Some side effects from treatments are not that fun but really most are short lived and not really that bad.
Thanks for your positivity Lynn, so great to hear at the moment and really what I need. Dads been feeling well so that must be a good sign. Hope your husbands op went well and you are both doing ok.
You are so welcome,us caregivers have to stick together!! Everyone that's in this site are all on our sides and rootin for one another.
I read one of these posts just recently, like your Dad this fellow was put on ketruda , not sure if the spelling one person wrote in that it did get rid of all the lung tumors.there oncologist said but did not the prostrate and that he would have to continue treatment for the prostrate but at,east the lungs were clear.
the spelling of the lung treatment might be Kytruda?? I'm positive that your Dads oncologist will come up with a treatment for your Dad that works for him. There are so many combinations of drugs today, it's amazing how they can treat us and it this beast out of commission!!!
That's for sure a good sign your Dad is feeling good!!! Tell him to,keep eating.. Appetite is a good sign also.
Sam and I are still in the hospital and so far getting stronger each day. They have to take care of the
Glad to hear Sam is on the mend and is regaining strength, thats great news!
You are very right, we do need to stick together, i've been getting amazing support on this site. There are so many wonderful people giving great advice and I am most grateful to everyone.Thanks so much for the above info too, I am going to do a little research into this.
Wishing your husband a speedy recovery and hope you are doing well and finding time to rest too.
Thinking of you both,
All the best to you
Clare xxx
There are prostate cancers which can progress without mayor change in the PSA. There are patients with very low PSA (less than 1 ) and cancer progression, so PSA may not always be a good indicator of tumor load.
These cancers are called neuroendocrine prostate cancer and they have a very low expression of PSA and can develop visceral metastasis rapidly.
Given the clinical situation of your Dad perhaps is time to consult with the people in Germany to see if he could receive therapy with PSMA Lutetium 177 which can produce remarkable results in some patients.
This is a link from my personal google drive to download an article about the Lutetium 177 therapy (the link is safe). Just look at the pictures which are remarkable.
To download the article there is a small arrow pointing down in the upper right hand side.
The therapy is in general well tolerated. It consist of an IV infusion of a ligand which has Lutetium 177 attached to it. The ligand find the PSMA in the cancer cells, attache to it and the radioactivity from the Lutetium 177 kills the cancer cells.
Hi Raul, thank you so much for your message. This is something I definitely want to look into with my dad. I will have a good read through the articles in the morning. I had not heard about this treatment before so thank you for sharing and I'm so glad to hear that it worked well for you. This gives me hope that there are still treatments out there that might help my dad.
It is kind of frustrating that we living int the USA and you in the UK never heard about the Gallium 68 PSMA to diagnose metastasis and the PSMA Lutetium 177 to treat them.
These techniques are standard of care for diagnosis in Germany, Austria, Holland , Australia etc and they have been treating patients for years in Germany and other European countries with good results and no mayor side effects except in cases of extensive bone metastasis because the radiation may affect the bone marrow.
I read some of the posts and it breaks my heart that people are not aware of these procedures. They go on one chemo after another when the median survival benefit of chemo is between 4-6 months.
When I was diagnosed with metastasis I looked at all the therapies available and I got lucky of finding information about the PSMA for diagnosis and treatment. I realized I did not have anything to loose so I jumped into the Lutetium 177 treatment. It took a while to convince the Germans to accept me, because they usually treat patients with more advance disease. I believe your dad will be not have mayor problems in being accepted.
Yes, it is very frustrating that we weren't aware of this treatment if men with advanced disease are getting good results from it in other parts of the world!
Thanks for all your advice and information. I'm seeing my dad tomorrow so will discuss with him.
I have contacts in the Technical University of Munich (TUM), so if you need more information please let me know.
Remember that the treatment is just an IV infusion of 1 hour and one has to spend 3 nights at the hospital so the radioactivity washes out of the body (German law).
Practically no side effects. Side effects present when there are multitude of bone metastasis. They offer 6 treatments one every 6 weeks.
Search in Pubmed.gov for prostate cancer and lutetium 177 and you will get a lot of articles. Just looking at the figures and pictures you can realize how effective the therapy could be for some patients.
Best of luck to your Dad, I was diagnosed with advanced prostate cancer and was told by my urologist that it was a very aggressive type.I had surgery to remove the prostate in January of this year and was doing well.While visiting my sister I became aware that I may have gotten a urinary infection.I went to the local E.R. and had a CAT Scan done and during the scan it was noticed that it had spread to my lungs. Doing the Chemo now and the Lupron injection only two treatments of Chemo under my belt and not sure what to expect.At 51 years old I never thought I would be dealing with this however I'm lucky enough to have a great support system along with a fantastic team at New England Cancer Center. Tell Dad to keep his chin up and Gods speed on his recovery.
Redbank, thank you for your supportive message. I'm so sorry to hear that you also have PCa with spread to the lungs. It was a massive shock to my family when we found out. My dads on chemo 4 and has number 5 next week. He's coped so well aside from being a bit more tired than usual and has also had to deal with some very stressful family issues on top of the treatment etc. I'm so proud of him for being so strong, he really is my hero. I just hope this blasted chemo is working for him!
I really hope that the rest of your treatment goes well and you get great results. Let's stay in touch, I'd love to hear how you are getting on. Sending positive vibes your way and wishing you all the best xxx
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