Now we are at the end of the second round. Tomorrow we go in for the third infusion.
Paul has been very fatigued throughout this second round. Really, fatigue has been the main problem, and a little bit of nausea during the first couple of days.
So I suppose we could say that, while the fatigue is debilitating in a way, as long as this is the only major side-effect, it is not too bad.
We are still struggling to keep his weight up. Last week the weight was back to 60 kg - something which it hasn't been at for a long time - but he couldn't hold it and is not back to 59.2. My belief is that He is eating little but often: Porridge in the morning, a Fortisip at 11 o'clock, vegetables and some meat for lunch, a slice of cake or something like that in the afternoon, and then fruit and bread and cold meat (like ham) throughout the night, always finishing with a glass of milk before going to bed because he feels that that helps him sleep. So I think the diet is okay, but I wish he would eat a little more of everything. But we will see...
Best wishes
Mel.
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MelaniePaul
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It sounds like you're both doing all that you can Mel. Hang in there. We're all routing for birth of you. Arms are wrapped around both of you. Mel, you should check out the ladies prostate forum. They are a wonderful group of awesome supporting ladies. Somehow I have gotten myself locked out again and haven't been able to get in. I need to figure that out of just been so busy but I think you would absolutely love the ladies they're not that these ladies and gentleman on wonderful but it gives you more lady support . No worries either way just wanted you to know that they were there.
Oh Jackie, thanks for mentioning it. I have often thought that it would be great to join a group of people - in this case women - who are supporting a loved one with cancer. Is that what the forum you are talking about is?
It is a group of ladies that support other ladies whose husbands have prostate cancer. There are An awesome group of ladies. Sorry I'm so laken back-to you this did not show up in my Alerts. I was just checking back-to see how things were and I found it they are very uplifting and positive and loving and kind and gentle.
I'm going to continue reading here and I hope that you're both hanging in there.
Great big hugs,
Jackie
Glad you had some success with the weight issue. I found that eating small meals more often was preferable with chemo. I think you have your best chances of keeping the weight on if you do that. I found it difficult at times to eat larger meals and then my stomach would be upset after which made me not want to eat.
Hang in there, we're all hoping the best for you two.
I haven't been able to keep my weight at my previous adult weight since I changed my diet over 10 years ago to try to help my PCa fight, giving up meat, poultry, dairy, bread, cake, cookies & sweets generally. And I haven't had chemo yet. However, the weight loss is about 10 pounds, so it's not too bad, although my wife would be happier if I could gain some weight & not be so skinny. I'm going to review Patrick O'Shea's posts about food to see if I'm depriving myself unnecessarily.
As to what Paul is eating, obviously the cake & milk conflict with what I'm doing. There are some milk substitutes that he may find acceptable. Oat beverage, if you can find it, is delicious! I've also used soy milk & almond milk, although I've used them with a bowl of oatmeal primarily, & rarely to drink by themselves.
I started experiencing fatigue a few months, especially when reading or watching live music, even though I was enjoying what I was reading, or seeing & hearing. At that point, I was on lupron & Zytiga. It continued while I was on lupron & receiving Provenge infusions, & it's continuing now while I'm on lupron & Xtandi. It did go away briefly when I had a reaction to my 2nd Provenge infusion & got a vast amount of sleep, so maybe I need more sleep, although I try to get 8 to 9.5 hours.
I am so happy to hear lot of positive things about Paul during this severe chemo treatment. If he can continue to eat in this manner definitely he should be able to gain more weight. It is really good that you give him more of what he likes to eat. Hope he will complete all his chemo cycles with your great help and get the maximum survival benefit.
Mel, I get my 5th round of docetaxel and carbo-platin, this week. My fatigue was very debilitating and I lost about 13 pounds after two weeks. I have now gained it back. Is Paul taking any steroids with his chemo? My Dr initially declined to give me any steroids, until I told them that my quality of life was not acceptable any more. I am taking dexamethasone (5 times stronger than prednisone), I take one 2mg tablet for a couple of days and then cut them in half with a pill splitter and take for two days. The half life of this drug in your body is approx 156 hrs. After the regimen above wait 3 or 4 days, minimum. Fatigue and nausea returns for me. If it is tolerable, then I do not take any more of the steroids, if not, try 1 mg per day for a few days, or alternate days, then stop again. Repeat as necessary. Caution, do not drink any alcohol with this steroid for at least several days after taking this steroid (personal experience). For nausea, I tried all the standard anti-nausea drugs, none helped. I found pickled ginger helps me. You can get at any supermarket that sells/prepares sushi or sashimi or a restaurant that serves Japanese food. You do not need much. Also, if stomach upset, I find chewing peppermint gum helps some. I also have a lot of issues with dizziness. My PSA has dropped from 43 to 1.5. Wish you the best.
Yes, Paul is taking the same steroid 8 mg 12 hours before infusion, 3 hours before infusion and directly before infusion. But he is also taking 10 mg Prednisolone every day 10 mg.
I am not sure if we would be confident to increase the steroid dose without consulting the doctor. I don't think they should be messed around with too much. Also, it seems like the steroids that he is taking as pre-meds are the reason why he finds it difficult to sleep for a good few days after treatment.
I am not sure but think that the combination of docetaxel and carbo-platin is the one that Paul wanted to try and our oncologist says that "he doesn't work with that drug". We thought it would be good because of his liver mets.
Ginger has become a part of our diet for sure, daily in soups, on bread, etc. Helps that Paul likes it a lot.
Nausea is not too bad at the moment. We find that 20 mg of Maxolon daily helps to keep the nausea down and to keep up a feeling of apetite.
Mel, Yes I am on same protocol, 8mg, night before, 8mg morning of, and what they give me prior to infusion. I am not taking steroids, daily as Paul is. FYI, 2mg of Dexamethasone is equivalent to 10 of prednisone. My Dr prescribed the Carboplatin, with the docetaxol, on same day, since I probably have neuroendrocrine cancer in my Liver and she felt so strongly about that due to experience and desire not to have be go thru a liver biopsy, without good reason. It should be noted that carboplatin is recommended for neuroendocrine cancer cells (typical of Liver mets, that do not respond to enzalutimide or abiraterone). Yes, I have trouble sleeping some nights, but does not coincide with my taking steroids, more due to stomach gas distress. I do take ambien, after I miss a night's sleep, sometimes just half a pill, that is usually enough. I still have nausea, but I tolerate it, unless I get the dry heaves. I will have to ask about the Maxolon, it seems to be no longer manufactured.
Ah okay, thank you for clearing that up about the Steroids.
Regarding Carbo Platin: Yes, that is the drug we though of before when it became clear that Paul had liver mets. Still think it is a bit strange that oncologist said: "I am not working with that drug." I would think that a good oncologist would work with whatever drug is available to treat the patient. But maybe he wanted to make sure that we are trying Docetaxol first. I think that the fact that Paul has been on anti-hormone treatment for 13 years plays a role as well. The body must be weakened from all this.
Yes, ask about the Maxolon, it is really good in Paul's case and might help you as well.
Mel.
Congratulations on your fight against this bastard. As I read the posts on the patio with coffee in hand and my Labrador Retriver at my side, I refelect back to my six month chemo trial over 13 years ago. I am struggling with some of the difficulties being experienced. Oh yes, there was fatigue and the Texas heat caused me to seek air conditioning frequency. The metallic taste of food and drink are all similar. I put deer hunting on hold and completely gave up goose hunting trudging in predawn rice fields with a bag of rags on my back with my dog at my side. I even put fishing on hold out in the bays. Yet, it was a small price to pay and I am totally at peace with my decisions. Frankly, a small price to pay considering the alternative.
Three things mentioned stuck out to me. The first milk products. Perhaps times have changed as I was absolutely forbidden to intake milk products. Oh, half way, I could have a bowl of ice cream every other week..... the second was weight. I gained 90 pounds. No doubt that was largely due to 30 mg of Predisone daily for six months. And, Lupron/Eligard injections turned 189 pounds of muscle to flab. Oh. I had dexamethasone also, but only for two days prior to infusions.
The third, is the course of treatment. This is were I am confused the most. Recognizing that all chemo infusions are not the same depending on body size, number of infusions per cycle and the various reagents given. For me there were three cycles consisting of six infusions weekly alternating Taxotere and Doxirubicin each week. Then a week off. For a total of 18 infusions. Taxotere infusion took a couple of hours and the other utilized a 24 hour pump.
I am curious as the methodology currently being used in treatment today by various Medical Oncologists. I have previously posted my treatment plan with amounts given.
I do want to add the positive support that I received from my wife, family, and friends were paramount in the fight. Additionally, I shunned those who were negative surrounding myself only positive people. As a result there were very few, "why me" or "woe is me" moments.
Even with my difficulties, there is no doubt that chemo infusions saved my life at age 57. Keep up the good work kicking this bastard down.
Thank you for this very encouraging posting. May I ask what you are currently on? Are you on any medication at all or full remission?
Yes, treatment plans seem to differ a lot and depend a lot on the oncologist team and hospital.
Milk products weren't mentioned to us at all as something to be avoided. They are saying to us, "Eat and drink what you like. That will help to keep your weight up." I suppose this is mostly due to the fact that Paul has always been struggling with weight.
As for support, we are finding that too. It is so important to have positive people around and as little negativity as possible. No doubt this is a very difficult/challenging journey for both the sufferer and the relatives/the closest ones, so we do need all the positive support we can get.
Mel, I came off of hormone injections in February 2010. A year later I started 4 mg of Androgel (testosterone) twice a week to jump start production of testosterone. I am still on Androgel and my T ranges from 450 - 650.
A long term remission. However, I did have a nuclear bone scan and abdominal CT scan last fall that was clean. PSA remains undetectable. MO (a PCa Researcher) says that he can not find any sign of cancer in my body. He sees me three times a year in follow up (use to be quarterly). I am one of several that show a complete remission after the study. I am fortunate and believe that having chemo as soon as mets were developed is the reason.
My frame a mind, every time I had nausea, "there goes more dead cancer cells..." lol .... positive reinforcement.
Admittedly my trial was unlike the standard chemo offerings today. Guess that is why I am curious.
Keep up the good work, and, keep kicking the bastard.
13 years is a long time especially with the constant change in cancer protocols. Glad to see it worked well for you, after those 13 years, Congratulations!
Thank you. admittedly, I treatment which I received appears to be unlike standard care today. Hence my curiosity. I started chemo as soon as I had mets which was right at a year after primary treatment. My guy is a PCa Researcher and zorofessir at a medical school.....
I have CBD Oil, that I bought, sitting on my dresser. I tried taking 50mg a day for a week with no noticeable effect. Still have four unused/ sealed bottles 500mg each. These are HTC Mega CannazALL, HEMP CBD Tincture. As far as Milk products, I have found smoothies, work well in getting down and soothing my stomach. 1 or 2 pieces of fruit, ice, coconut ice cream thru a blender. Bananas, cherries, mangos, peaches are good for me.
Fresh fruit seems to be the one thing that he loves the most at the moment. Particularly peaches. But, because it is very good for the liver, we have lots of leafes as well.
CBD does work, it just has to be from the right source.
I use Dutch natural healing- it is the best on the market. Keeps inflammation down, potentiates my pain meds, helps with appetite, and as a side bar has cleared up my placque psoriasis that has been around for the past 30 years.
Yes, I think I have found and joined this group. I posted an introduction to the ladies. But I haven't been notified of any movement in the group. So it seems to be a very quiet one
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they are very uplifting and positive and loving and kind and gentle. 
What should I expect at the end?
mCRPC end of ADT--staying the course. 
2nd Round of Chemo Done
I think this is the beginning of the end. 
High ALT level after second round of chemo
