Mike’s update : It’s been almost six... - Advanced Prostate...

Advanced Prostate Cancer
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Mike’s update

Lagovista2018
Lagovista2018

It’s been almost six months since my husband was diagnosed with stage 4 prostate cancer with Mets to his bones. He just finished his round of chemo and ranged the bell that he was done. Even though his journey is far from over. He is doing remarkably well he’s a to get a few transfusions and calcium treatments due to his hemoglobin and WBC being low. On a Monday he goes in for a CT scan and MRI to check the progress of the tumors hoping that they’ve shrunk even more since his last CT scan 2 months ago.If

Everything looks good the next step is to radiate his prostate and to continue to monitor with CT scans and MRI. His oncologist want to treat his cancer like small c cell lung cancer due to his neuroendocrine cells and there is a possibility that it can go to his brain (70%). The good news is that his tumors have shrunk and his doctor have even said they have gone down in his bones. Any advice on moving forward would be nice. This forum has been an absolute blessing to me and my family.

49 Replies
oldestnewest

Such good news! And a great picture of your family.

As for moving forward, don't be surprised if you have a "low period" soon. I know that I had a really tough time with depression and anxiety soon after my husband completed his chemotherapy. In hindsight, I think I ran on fear and adrenaline for the months between his Stage IV diagnosis and the end of chemo, and THEN everything caved in on me. I cried for hours every day, couldn't sleep, etc. Thanks to therapy and medications, I got better after a while. Hopefully this doesn't happen to you, but if you feel yourself "sinking" don't wait to long to reach out for help.

Prayers for strength and continued good results!

How long has it been since your husband was diagnosed. I know for mine the worst part is he gets horrible hot flashes and he gets shortness of breath sometimes and some fatigue but he hardly has any pain.

February, 2017. The side effects from Lupron are the same that your husband has, but we've managed to get the flashes under better control. He takes Effexor daily, melatonin before bed and we use a diffuser with lavender oil to help him relax. He has some pain but it's manageable with Tylenol, etc.

Bob10
Bob10 in reply to Lagovista2018

Hi sorry for jumping in ..I also did chemotherapy and you don't realize how much fatigue builds up over time..but I've been done with chemo now for almost two months and I feel great no more fatigue..in time I hope that his also will go ..God bless.

No pain is awesome . I have his same side effects. We can adjust with time ..

tom67inMA
tom67inMA in reply to TNCanuck

I also just hit 6 months/ end of chemo and definitely have been having a low period. For me, I had been so focused on the end of chemo that when I didn't instantly feel better afterwards it was a bit crushing to the spirit. Four months of chemo and now it may take a couple more months to partially recover. Ugh!

Right now my husband has some fatigue and a little shortness of breath if he’s still feeling this way by Friday he’s going to go get blood work done. Next phase is CT scan and MRI to make sure there is no cancer in other places and or it has gotten bigger. If everything looks good then he is going to get radiation on his prostate

My biggest complaint has been back and hip pain. I'll be getting a bone scan shortly to check progress. Not exactly sure why I'm not getting a CT scan or MRI myself, but since most of my cancer is in my bones the oncologist wants to look there first.

Here's hoping we all get good news!

I know what you mean. Mike’s oncologist is no longer going to do bone scans he’s already had two bone scans done. His oncologist says she can monitor his alkaline phosphates chart and said the cancer in his bones has gone down as well.

Whimpy-p
Whimpy-p in reply to tom67inMA

I didn’t do chemo yet . For me all treatments are drudgery . Bu5 if it worked , life is worth it. Peace in Ma.

Really? I might have to get a larger diffuser We have a small one but he says it doesn’t work. We also have melatonin. I will try that too. Yeah mike is on hydrocodone/Tylenol for the pain

HiddenThis reply has been deleted
TNCanuck
TNCanuck in reply to Hidden

According to my husband's oncologist (who specializes in PCa), you are mistaken. He's the one that recommended it.

BarronS
BarronS in reply to TNCanuck

You're right. I changed my post to reflect that. Just read some studies indicating that it could be beneficial for people with cancer and it could be helpful for elderly people in which melatonin production was lessened.

Thanks for informing me. I just personally went through hell for a week once i finally got off of it.

TNCanuck
TNCanuck in reply to BarronS

We're all here to help one another, so I will always share my husband's experiences. Just wish you had had a better experience with melatonin. Thanks for replying again. We're all in this together.

Whimpy-p
Whimpy-p in reply to BarronS

I stopped both Melatonine and naltrexone for two weeks about four months ago after constant use of four years . Someone had suggested to do so . For me it was a mistake. slipped into a state of depression after 5 days off. Started up and was made good again . Don’t plan to ever do that again... Take it easy . I’ll take it any way I can get it . Sleep I’m talking about.. 😎

I changed my post to reflect that in my own personal experience, melatonin was absolute hell to take and it actually made my sleep problems worse. I did just read a study that it was beneficial to people that had breast cancer, so maybe it is worth a shot.

Your husband may feel better with it and have a vastly improved experience. Regardless, I do wish you the best and I am so sorry that both you and your husband have to go through this hell. You are in my thoughts.

Do you have any sources i can read that deminstrate this experience because i was taught high doses of melatonin could help fight cancer. I personally do get bad dreams but with two parents one alive,both cancer, i am trying to protect myself as well as help my dad.

My husband tried melatonin before and said it didn’t work. Last night he took Tylenol PM as he has before but had a bad reaction to it he said it felt like he had restless leg syndrome in his right leg and right hand. This has never happened before.

Try sublingual maletonin perhaps. I do not have cancer but insomnia. The regular melatonin never worked for me and anything with pm makes me sick and i toss and turn so it is not the cancer, it is just the med. Codeine though it helps pain and sleep, look up info as any narcotic can also disrupt sleep. L theanine , kava kava, medical marijuanna are other sleep aides that uou might look up because all otc stuff also has side effects as any med. Other than traditional sleep meds,Clonapin and other benzodiazepines as well as tricyclics ,antihistamines and a drug called remeron are given for sleep. Remeron was given to my mom when diagnosed with stage 4 lung cancer. Clonapin has a good chance of working but research because benzos affect the brain unless short time used. The oncologist here seemed to trust remeron which in low doses is for sleep and as a lifelong insomniac i can tell you that works. If you wish to go holistic consider the 3 i named and some say lavender helps them , keeping good gut health, and magnesium. Please look all up because i am not a physician,just experienced with hormone deprivation and insomnia (lupron and endometriosis). For night sweats its good to keep ice near by, as placing near not on the head will cool the body down. My dad stumbled through the first months without sleep because he refused meds, but i remember how desperate he felt. However, once his body got used to the male Male menapause, the adt drugs, then he was able to sleep. He sleeps fine now, but wakes to pee. Hope this helps xoxo

I have a lot of tricks up my sleeve for insomnia. After trying melatonin, I would try L-theanine - start with 200mg.. swanson sells it and I find it works great.. Usually 1-2 pills will do the trick(so up to 400mg) It takes about 30 minutes to work. If that does not work my son loves Alteril - you can get it from Walgreens.. it has different herbs in it. If those do not help let me know as I know of other things that may help. My husband has Neuroendocrine PCA .. diagnosed in June 2017. We adopted a plant based diet and do the Square One Cancer Coaching plan INTEGRATIVELY(with regular medicine). It seems to help.

Sending hugs, prayers and love!

Softwaremom

We couldn't tell the difference until we got a larger one. You might give it a try!

20 or Even 40 mg before bed is recommended by naturalpathic med for cancer patients . I ‘ ve done 20 mgs per my nat dr. plus 4.5 naltrexone per night for four years to aid sleep . I do have vivid sometimes wild dreams but I do sleep . Relaxation heals . ✌️

Hi Lagovista,

First, congrats on your & your husband's good news! Forward progress is always wonderful to read. I hope I'm reading your post correctly - when you mentioned the diffuser, were you referring to what TNCanuck said about lavender oil? If so, in addition to a larger diffuser, you might also consider trying Chamomile oil instead of, or in combination with, the Lavender. Chamomile is another renowned sleep aid. There are several types out there - you can use German/Blue ([Matricaria recutita]) or Roman (Anthemis nobilis). Don't use Moroccan. Cham is pricier than Lavender. The best price I've found for a quality oil is at Hopewell. If I misread, this is probably too much info (sorry :)). In any case, very best wishes for your husband's continued improvement and to you & your family!

In solidarity,

Sunlight

Yes that is helpful. I going to purchase one today. My husband took Tylenol PM last night as he has in the past as needed and had a bad reaction to it and said he is definitely not taking it anymore. So I been doing some research and everyone on here has said a diffuser with lavender helps but I will also purchase camomile oil too

There are some clinical trials he can look into here:

pcnrv.blogspot.com/2016/12/...

Good luck to Mike....Here is an article on MCRPC and says a drug called decitabine may offer some hope for neuroendocrine.... towards end of article

sciencedaily.com/releases/2...

All the best,

Don Pescado

Thank you the update . He’s been busy . Now recovery ... I pray for the best on Monday . With his love from his family he has great reasons to endure this .. 🙏

Wonderful family pic . Thanks ..great smiles ...

Sending good thoughts. Dont give up...science is advancing. Knowledge is power. Fight like hell and meditation is an idea. My dad stopped any percoset with fractured pelvis once his radiation to pelvis helped. He is wary of any narcotics so he made the harder choice but he is currently doing amazing on zytiga and prednisone. Chemo was the hardest for him snd im glad you are done. His whole body swelled by the 6th trearment and it did take months to recover but he was working daily in high stress business and he wasnt taking good enough care of himself. Water and more water. Congrats on finishing chemo!!! Keep truckin xoxo hugs erica

May God bless you and your husband and family. And hopefully things will get better. Janet

Great to hear Lagovista. I hope he continues to do well. Take care

Great news, glad to hear all is going well in the battle against the monster. Keep us informed 🙏🙏🙏🙏

What a lovely photo

All the best

News good

That’s great

Hang in there

X

He has a lot to live for. The right attitude is the best assistance for medicine and you both have it from the sound of it. Thank you for sharing. It’s helpful to me. Best of luck.

Good news there has been a positive response to treatment. There is no mention of Gleason grade and you will need to consider that in future monitoring.

A low G grade should mean watching & waiting but higher will need closer scrutiny with Oncologist. Best wishes

His Gleason is 4+5=9 at diagnosis his Testosterone levels are 11 and his oncologist said just as long as they are below 50 it’s good.

With a G9 I would suggest keeping a wary watch on PSA plus Alkaline Phophate for bones. Make sure any new unexplained pains are reviewed urgently.

Well it’s low because my husband has neuroendocrine differentiation which tends to be more aggressive. So he will have a low PSA. His oncologist had him on 6 rounds of chemo next is radiation which at first they said they wouldn’t even do because of the neuroendocrine differentiation but since he responded so well to it and his pain and numbers are low they are going to radiate his prostate and do CT/scans MRI and to treat this like small cell lung cancer

One last thought on neuroendocrine--you could try and get in the RRX-001 trial or ask under right to try--It is a radiosensitizer and chemosensitizer prior to platinum based chemo--see trial below:

clinicaltrials.gov/ct2/show...

Good luck....

Fish

Often when chemo is done and /or radiation a result is the defining goal.

But our bodies are not built to accept these invasions. Yet we need to do something.

So on the one hand we have the disease then we have the cure. So its fighting fire with fire. You must at the same time get proper nutrition to hold in check the bad part of these treatments. You cannot over look the damage to other things owing to nutrition depleted by these invasive but needed treatments. Some nutrition actually helps the treatment to work. Do not ignore this very important aspect.

My husband is starting chemo this next Monday. Where did your husband have chemo done and what was drugs used. We are in trial of Cabazitaxel-Carboplatin Induction Chemotherapy. What side effects did he have. So happy for your family he is doing great.

Lagovista2018
Lagovista2018 in reply to MsHope

We’re in San Antonio Texas and he goes to the start clinic Dr Amanda Bucheit is his oncologist we’ve also been to MD Anderson in Houston and have talked to Dr Paul Corn. Dr. Bucheit use to work with Dr Corn and they had my husband on 6 rounds every three weeks for 3 days of carboplatin and etoposide for day one and etoposide for days two and three.

MsHope
MsHope in reply to Lagovista2018

Thank you so much for your response. I am a nervous wreck and so devastated. My husband is doing better then me at this point. I don't know what to expect as to what I will need to do to take care of him. That is my husbands plan chemo 6 treatments done every 3 weeks. We live close to Houston that is why we are doing to MD Anderson. How bad were his side effects?

Lagovista2018
Lagovista2018 in reply to MsHope

The only side effect he has was fatigue and very little nausea and shortness of breath due to his hemoglobin being low not producing Red blood cells he’s had a total of 3 blood transfusions

Well first of all great picture. Second Congrats on completing your chemo. Third I thought lagovista was the name of a Philippino sausage and then found out it's a town in Texas. Fourth I got over nuggets too. Sixth Take the time to enjoy yourself and with that group in the picture undoubtedly you will. Seven Keep on Keeping on... Eight

Good Luck, Good Health and Good Humor.

j-o-h-n Thursday 04/25/2019 5:55 PM DST

Love the photo. Alk. Phosphatase going down is always good.

Best of luck my lady. I hope he continueto improve.

Sridhar

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