New Diagnosis - Our story

[Pinks]

Just wanted to update on my dad's health. The oncologist prescribed Honvan and wanted to see if that works. My dad did his PSA after 3 weeks of taking that medication. His PSA went down to 47 from 79. Hopefully that will bring the PSA down further. They will test again in few days. His feet are swollen and have rash on them. The doctor said it may not be honvan, it may be because the PSA went up. Rash, I am not sure what he said. If it doesn't improve or more side effects, then he may have to change the Honvan dosage or prescribed something else altogether. That's where we stand right now. But I think PSA went down is a good outcome. 

 

My dad still has back pain. He has difficulties sleeping on his back on a bed. So, oncologist now gave his different pain medication. He said if the PSA goes down further, may be we can give radiation to prostrate, lymph node in addition to bone (i think) instead of just to the bone if we do the radiation now. That's what he would prefer, however, if the back pain gets severe he said we could do the radiation right away. So we are just waiting a few days to see if it improves as the PSA is going down. 

 

Dad has quit eating meat, dairy and eating more tomates, pomegranate, turmeric, vegetables. Still researching on his diet that would help. He is not able to exercise due to his back pain. Are there any recommendation on exercises?

 

Please feel free to let me know if any suggestions or we are making any mistakes. The oncologist seems to be knowledgeable and so we are moving forward with his plans. 

 

Hope all is well. Thanks again for the wonderful support I get here. Appreciate it. On a side note, my son turned 3 months. He is absolutely adorable and super cute. I am hopeful and looking forward to my mom and dad visiting us in USA in near future to meet their grandson. We facetime with them everyday. 

 

Have a wonderful day to all of you.

[Bruce Kynaston]

FPlease, might I suggest you gently, repeat gently, 'thump' with closed fist, down the spinal column to see if that suggests tenderness where he feels the pain.

If so, he needs an X-Ray of that area as he may need special attention given it with beam therapy.

I am a very much retired radiation oncologist.

best wishes,

Bruce.

[Pinks]

Thanks Bruce! Of course you can suggest. I will tell my brother in law and sister to do that. My BIL is a orthopedic surgeon. So he should be able to tell, I hope. I will get back on this one. I know you had recommended this earlier too and I had asked them to check on my dad. 

 

By any chance do you know why the swelling feet? I FaceTimed with my dad and saw his feet. They are pretty swollen and he has difficulties going up and down the stairs. The oncologist has suggested it could be due to elevated PSA and to lift the feet while sleeping. Mom is applying coconut oil for the rash on his feet and wrapping thick bandage (I think). Not sure if that would help or not. 

[Pinks]

Seems like my dad back pain is becoming more and more unbearable. My sister checked his spine, but she said it’s from iliac bone than the spine. They will talk to the onco doctor next. His feet are swollen and he has some skin irritation (line rash) on his feet too. The pain killer is not working for back pain. Is that how it is with folks who has back pain? Do they all do radiation?

[Pinks]

We will go with the radistion. His back pain is to the point he is not able to walk. It hurts even when he coughs now, itjust happened in 5/6 days. Is there any type of radiationbetter than the other? I believe they will give proton beam. Isthat good? 

[Bruce Kynaston]

Sorry, but I am unable to comment on proton beam therapy as it was not available when I was treating patints. Seems that good advice and care is at hand.

Best wishes,

Bruce.

[Pinks]

Hi all,

 

So my dad started the radiation for his back pain. Its the 5th day. He was on Honvan and the oncologist stopped it. His legs are pretty swollen which is a side effects of Honvan. But Oncologist doesn't think Honvan caused it. He has reviewed all the mets and scans, he thinks its something else.

Today, my dad is having severe back pain. He is really getting frustrated and very low mentally. Is this normal to have pain during radiation? What can we do help his pain? Its so confusing. Also, does he have to be any medication (like honvan) while going through radiation?

[Bruce Kynaston]

Sorry, but I can only say it is between the patient and his doctors.

My sympathetic thoughts for him, I realise are of little help.

best wishes,

Bruce.

[Charles (Chuck) Maack]

First, Proton Beam is actually no better than photon beam (EBRT/IMRT) - it only costs much more.   A thought is since spinal and back issues can come from so many areas/reasons, is his pain more pronounced when he is lying down for the radiation?  Radiation doesn't usually cause pain unless there was metastasis in the area of pain.  It may be simply the having to lay down for the radiation that is irritating whatever else is going on with his back. Will be looking forward to a post that explains that they found out what his problem actually is causing the pain.

 

 

[Pinks]

He has Mets on his iliac bone. The tumor is compressed against the spine and that is probably causing the back pain. That is what we were told a month ago when he had some back pain. Yesterday was way severe. He was fine (not this severe pain) the day before. Pain is severe when he lays down. He pretty much sleeps in a chair now. 

 

The doctor syoppped honvan. If that is triggering the severe back pain. I will check with him today and update. They are going to discuss with the doctor today. 

 

Hope he can continue the radiation to get the benefits. I am trying to encourage him as he is getting frustrated due to pain. 

[Pinks]

I hope you are all doing well. Thanks so much for helping me out with your feedbacks and comments. I appreciate it.

 

Would like to update my dad's health. After the severe back pain that day, he could not even walk. His legs were swollen with minimal movement. We had to call ambulance and transferred him to the hospital which is where he is taking the radiation right now. The situation got escalated from just fine to that he could not even walk in just few hours. However, in the hospital, the doctors gave him some injection to help the nerves. That just helped right away. The swollen went away next day, although he could not walk right away. Right now, with physiotherapy he started walking a little bit. The radiation is ongoing and the pain has gone down a lot. Its about 8 days or so in to the radiation. We still have a month ahead of us but it looks like things have improved. But we are hopeful this will give him comfort from the back pain.  My dad is also in very good mood now. We are just planning to stay in the hospital until the radiation is complete. Its expensive, but he is getting the best care there. The other thing that helped him is the hospital bed which he can adjust to his comfort. We are planning to buy one for our home so that he can sleep in it in case of any future back pain.

[Pinks]

Update on my dad - His back pain has resolved and it’s only a minor feeling here and there (1-2%) if sleeps in certain ways. So atleast that’s a good thing. His legs has improved but he still needs strength to walk without the walker. It’s hard to take it for me he was walking 5/6 miles daily. It’s a slow improvement on legs. His legs swells up if he sits with his feet hanging ..it needs to be kept elevated. The doctor is wondering why this would be the case. There is no lymph nodes that is causing this unless something really small they can’t see. 

 

Does anyone have seen or have similar leg swelling? Although dad’s swelling has gone down 90% but still little bit is there and he is yet to walk on his own without the walker. He think it will take a little while with the exercise (walking). His doctor said it will slowly go away with walking and exercising. He has been coughing a little bit as well - which my sister said it’s a positive thing. After this I believe, Doctor is planning to have him honvan as long as it works before he goes to zytiga etc. that’s my understanding.,

 

Now, he is on his last week of radiation. So far he has no big side effects (other than frequent bowel movements and burning sensation during urination).

 

Hope all is well with everyone. Thought I would update on my dad’s. Can my dad join one of your conference/meetings or support calls in future? How can he do that from India? 

[Pinks]

I have not posted in a while. My dad went through the radiation. His PSA after 2 months is at 22 (it was 49 before). He was not under any medication during this time. The doctor wants to check again in 2/3 months to see if it goes down further. He got huge relief from the back pain. He is slowly gaining strength to walk independently. But that's a little slow progress there. He is worried that he may lose his balance. His feet at still a little bit swollen (which comes and goes). We are not 100% certain why the swelling is still there and why isn't he gaining his strength quickly to walk. What can we do to improve that?

 

Although, the sever back pain is gone, but he does have here and there back pain. What I was told is that one of disc has been impacted and that might be the reason. He needs to be careful not to cause any stress there. Is there any specific exercise he can do or take any medication to improve his overall health? Thanks so much in advance for your inputs.  

[alanbarlee]

Hi again Pinks,

It'd good that your dad's radiotherapy has been beneficial.

His apparent neuropathy (possibly with circulatory issues as well) does raise balance problems and the risk of falls.

I can only suggest that he persists with daily aerobic exercise within his limitations, but with a view to progressively building his stamina, and that he adds some level of resistance exercises under the guidance of an exercise physiologist trained in cancer rehab, or at the least a personal trainer. At the same time he can be guided to do some daily balance exercises. All of this can be done in a gym or at home, and he can maintain a written record of his program adherence and his progress. The benefits will be to his mood, as well as to his body. 

If he needs some pain relief, there is ibuprofen, paracetamol or both, all with daily maximum doses and plenty of water. If the pain is chronic, it's usually best to anticipate it rather than trying to overcome it. Anything else should be via his doctor - who should also provide individual guidance to his exercise provider.

Best wishes,

Alan

    

 

 

[Pinks]

Thank you Alan. Appreciate it. Hope you are doing well. I will convey this to my dad. He appreciates all the comments and information that I gather here and inform him. 

[Pinks]

Dad’s PSA this month is going up again. It went from 22 to 37 in a month. He just had radiation and wasn’t under any other medication. He already had his orchiectomy last year. The doc wanted to watch with no medication after radiation. Is this normal for his to rise again after radiation? What should we do now? He is seeing his oncologist today. We will find out more and I will update. Has anyone gone through something similar? 

[Pinks]

The oncologist said it’s bouncing back. He prescribed zytiga and prednisone. I know earlier folks have suggested zytiga and chemo. I believe the oncologist just want to do Zytiga. He tried honvan before radiation. That didn’t work for my dad as he started having severe back pain, Swelling in his feet. For the past one week he was complaining about back (not severe but noticeable), and walking he was having difficulties due to his swollen feet. Are we on the right track now? Does he considered castrate resistant now? I hope zytiga works for him. If that also doesn’t work, what’s next? I am so worried. 

[alanbarlee]

Your dad's oncologist's recommendation of Zytiga + prednisone sounds appropriate to me, based on my personal experience. That combination, with continuation of Zoladex or Lucrin, has a very good track record. but recent trials show that adding chemo at the same time worsens side effects and provides little added benefit.  

 

If /when that treatment fails to control his metastases there is Jevtana (cabazitaxel) - a successor to Taxotere (docetaxel). Both of these chemotherapy drugs have good efficacy, but with different side effect profiles.

 

The management of side effects is already important in your dad's care, and should always be included in conversations to review his treatment. The risk of some of these can be monitored with blood tests (e.g.neutropenia and related conditions that compromise the immune system).

 

The swollen feet problem could be investigated with an ultrasound examination of the blood vessels in his legs and feet, since there is the possibility of blockages that might be treatable. Similarly, fluid accumulation if present might be managed with lymphatic drainage massage, or even with medication. This should all be discussed with his medicos.  

 

Where it is available, medical cannabis can be helpful in controlling pain, rather than depending heavily on opioids. Take a look at Mayo Clinic's Complementary Medicine page for evaluation of of a number of options.

 

Cheers,

 

Alan  

 

 

[Nev Black]

Some Doctors might add Avodart with the Zytiga + Prednisone.

[Pinks]

Thank you Alan and Nev Black. I have informed my dad. But he told me that oncologist wasn’t suggesting chemo along with/prior to zytiga. He said it’s bounced back quicker as he was hoping  first line of therapy would work. ..so he was worried and said it could be genetic or unlucky that hormone therapy first line of treatment didn’t work. It’s been 3/4 months he got his radiation ...Tests will be done in a month. 

 

I asked about the feet, and they are saying exercise should help. But will discuss more on that. Dad does have some back pain and taking pain killer now. 

 

Thanks again for your helpful comments. Appreciate it

[Pinks]

Hi again everyone, My dad just got his PSA report back today and his PSA is high (100). He has been taking this for about a month and his PSA jumped from 37 to 100 in one month. Is it too early to test or he is not responding to Zytiga? Whats the next step? He looks pretty good other than he is working with  a physiotherapist and some back pain here and there. He got his appetite back as well. We have not reached out to his Oncologist yet, but wanted to get some feedback here. Has anyone has similar experience? Any idea what is going on? Really nervous about my dad.