Ok so husband has gone from 203 on November 20th to 182 this morning. When he hit 183.5 yesterday I insisted we go to ER. They have him a bag of fluids. Labs actually didn’t look to wonky so they sent him home 3 pounds up from the fluids but was even lower this morning. Clearly he can’t lose 1-2 pounds a day for long. Dr’s keep suggesting Boost, etc. The problem isn’t lack of appetite though- it’s severe bloating in his belly that is very uncomfortable and any eating brings on intense stomach cramping. He’s tried Imodium, gas-x, Prilosec. What the hell am I supposed to do? He’s in total denial that this is an issue and I’m just watching him waste away. They did CT with contrast of belly, pelvis, chest. ER Dr said it looked relatively stable- at least no tumors that are causing blockage or anything. Thoughts? Please.
Extreme rapid weight loss : Ok so... - Advanced Prostate...
Extreme rapid weight loss
First thing to do will be to check what should be his ideal body weight according to height weight tables...
Research cancer cachexia on the web. It may explain what is going on.
Unfortunately I already had and it just made me cry so thought I’d try here lol. 😬
With the usual disclaimer that I'm far from an expert in this, have any diet changes been tried? I'm going to guess that he's having trouble digesting and absorbing nutrients from his food. If so, this is not the time for a whole food, plant based diet. It's a good time for highly processed, easily digested and absorbed food. High sugar, high simple carbs, whey protein shakes, etc. Fatty food might be an option if he can digest the fat, otherwise it will cause more bloating and gas.
Fluids aren't the answer unless he's dehydrated, and even if he were that wouldn't explain 20 lbs of weight loss. 20 lbs is about 2.5 gallons of fluid.
I agree the weight loss can't continue. In my opinion, maintaining a healthy weight is more important than eating healthy. Hope you find an answer, you two have been through way too many trials in too short a time.
you have a great way with words...and your sentiment seems very relevant...as I have just done some research on wasting in Cancer/HIV, etc. What is healthy(?) one day is NOT the next. Life is constantly evolving. Thanks.
I agree...a MacDonald's hamburger with a milk shake might be just what the "doctor" (should) order.
John I so appreciate you- no doubt one of the biggest cheerleaders on here and such an asset to this page! Totally agree! One night he wanted whataburger (yes please!) but just nothing goes down. Good food. Bad food. Coke slurpees worked for about two days but then they started causing cramping.
As for the research on wasting- sounds like you’ve already done it but if not I suggest avoiding! Not good reading!
...what is it you often say...good day and good health? Hoping that for us all. 
I only researched it after you mentioned Joe's. It was/is a depressing read...but I like to understand what people are going through...so that I have true empathy. Since his came on so quickly...I'm hoping it's not a true case of wasting and that there is a small issue (not found yet) that will fix it. Blockages and such are very hard to see.
gJohn
Lots of diet changes tried- everything from shakes to greasy burgers to healthy smoothies to ice cream to Boost. A small cup of egg drop soup is pretty much the only thing remotely tolerable. Thank you. Just a crappy situation!!! Probably caused by trial drugs causing inflammation in his gut- but knowing the answer unfortunately doesn’t fix it. 
Prayers for miracles and healing.
And hoping you saw my other message too- they got a little out of order. Really do appreciate.
Imodium? Is he having diarrhea? constipation? Is he taking any opiates?
No diarrhea, though he is regularly taking Imodium and without it would have diarrhea. No constipation even with the Imodium. He is taking opiates but has been on same dosage for 27 months and this is an acute change over 18 days. At a loss...
How do you know he would have diarrhea without imodium? Opiates slow bowel motility, which could account for the bloating.
Because every time he stops the Imodium he has diarrhea...
Can it be a side effect of The immunotherapy?
No doubt. I would advise people to think very strongly about whether it is likely to be effective for them before going this route. I tried to dissuade Joe but Dr’s were unrealistically encouraging and I feel certain his lifespan will not only be shortened but his quality of life is worse. My hope now is that he will stop and that his symptoms will subside.
p.s. if he is having any kind of constipation...I have found that my mother's old "tried and true" remedy of.... Epson Salt and water..(you drink it). Nasty stuff..but this shit (pardon the pun) will clean you out...and quickly. About 3 or 4 tablespoons in an 8 lunch glass of water.
I asked a pharmacist in Europe about it for my partner, Richard, who often gets constipation when traveling and they had never heard of it....but it IS the BEST ! ! ! ~~Old American Pharmacists in this country know about it.
John
On a cruise ship I am the one, in a low voice, asking for prune juice. They have it, it's behind the counter so to speak.
Have you seen a gastroenterologist?
Joe
Several times this year. Stomach cramping and upper abdominal pain have been a constant, painful problem. They have never found anything and none of their recommendations have been helpful. His appetite has been reduced for a long time but weight remained stable. This is an anomaly. Not sure what to make of it.
Yikes. Irritable Bowel Syndrome (IBS) runs (ha...?) in my family and I had a similar experience as your Joe (not as vicious, by all accounts) when I was on chemo and getting radiation and was on opiates....as the IBS ran the train through at full speed, so to speak, I did a little research on Imodium then; apparently to our gut it is no different from an opiate and can lead to bloating and cramping...as it did with me even as the diarrhea relented.
Did your GE suggest any anticholinergic meds? Not that I am an advocate for adding anything to what we are on already, but ACs have periodically helped the IBS in our family..... good luck - when the bowel ain't happy, ain't nobody happy.
If he may still be in the clinical trial involving combination infusions of ipilimumab and nivolumab, the gut problems might be adverse events from one or the other of those drugs. Historically, "ipi" (Yervoy) has had the worse side effects profile, including some fatalities in clinical trials. You may want to closely examine Section 5 and other sections of the Prescribing Information for "ipi" and discuss closer monitoring and possible dose adjustment/highlighted potential "rescue" treatments with the doctor(s).
accessdata.fda.gov/drugsatf...
Charles
Kind of same thing happened to me, I went from 165 down to 145 in a month. No medical explanation and they looked at everything. 8 months later I'm still at 145. Funny thing is, I felt good during my rapid loss and still do. My medical teams just shakes their heads.
Wow! That’s really weird- but if you feel better good for you!!! If Joe was feeling well I wouldn’t be nearly as concerned but he’s worn out just from getting up to to the the bathroom. Hoping things turn around soon!!!
I hope you find answers. Continue asking for help. Help comes sometimes when unexpected. Opiates can definitely upset his digestion and mess with his gut tissue. When my husband was on them he would take all pain meds with some type of drink or food. A bite of a banana, or he'd have a little liquid yogurt, or those new packaged squeeze baby food. If they haven't found anything I'd look to making sure he takes any pain meds with something that coats his stomach..
katy... wishing strength for you, for trusting, love, answers that are good for both of you. These curve balls come.. we get tired, but we becomes good catchers ... anticipating solutions, being creative, saying 'so far so good'... being grateful while under duress...
much love and good wishes for you both..
Beautifully written and exactly what I needed to hear exactly right now. Thank you...
I don't hear he is in great pain?
MY extreme weight loss I believe caused by APCa chewing on my bones, using all my energy for its rapid growth while leaving me with none. I'm 6', was 215 in mid Dec 2017. 1st of March down to 158. Lots of pain, no sleep, absolutely no appetite, so ate little, heavy on the opiates. PSA spiked to 1300+.
No SOC help at all.
I started my own Alkaline Therapy, then ADT Lupron, added CBD for pain and sleep, ate healthy which eliminated indigestion. Reduced pain, more sleep, PSA down below 3, appetite good, weight back up 40lbs.
It took at least moderate control of PSA symptoms and a little time before any weight gain.
Keep at it, be a little patient, reduce pain, eat healthy, and remember many treatments have significant side effects.
I did get rid of all my "larger" clothes and now trying to keep weight off rather than desperately trying to gain.
2Dee
Wow! That is a massive weight loss. Joe is in an incredible amount of pain but I actually think he would be better taking more pain meds. He’s been in the same morphine dosage for the two years since diagnosis. At this point it doesn’t really even reduce pain- it is just baseline. He hates taking norco but will when the bone pain is bad. When his stomach is cramping he won’t take it because it just causes further irritation. As I’m writing this I’m remembering that we met with palliative care the last time he was hospitalized and they had some alternative pain management recommendations. He needs pain control and something to reduce the inflammation from his trial treatment which is just incredibly harsh. Definitely worse on him than chemo ever was. We do see our local oncologist tomorrow and they’ve already scheduled him for fluids. We’ll get labs, have a long talk with our dr, with each other, and then make some decisions about whether he’s going to do another treatment next week or whether he feels like he has had enough. He’s the strongest man I know but cancer is a beast. There are times I think his life will be most prolonged (and comfortable) by managing symptoms. We will see I guess...big day for us tomorrow. Can’t sleep but praying for us all - for those of you here who have cancer and for those here who love y’all...
I strongly suggest that CBD, 100mg-200mg a day will help pain, sleep, anxiety, and weight. I took accurately measured dosage drops EVERY 6 hours without fail. NO prior recreational drug use at all during the previous 75 years so difficult for me to get started. But everything else not controlling pain.
CBD controlled 70% of MY pain, finally slept more and more each night, reduced Norco from 10+ a day down to 2. Now, months later have reduced CBD to less than 100mg a day.
In MY case I believe I have at least 4 separate "types" of pain to control. Each requires a different therapy and nothing removes completely. But pain down to tolerable while carefully and accurately treating consistently has really helped ME. I recently slept through the night one night. Wow, only took about 2 years. I hope for more.
Keep working at reducing pain and opiates by whatever means you can. Weight and sleep will take care of themselves.
2Dee
Thank you for that- particularly the recognition that there are different types of pain and that they must be treated differently. As we are about 5 minutes from oncology appt particularly good timing. I will bring this up!
My experience is that unless the doc has personally delt with extreme chronic pain they can't know what to do. SOC for pain is very limiting. Your doc needs to know what you are doing but they don't and can't professionally suggest anything outside SOC.
More opiates or a referral to a pain clinic. I think that pain is the least understood of our many maladies. You kind of have to fish around for what works for YOU.
Keep a good diary of treatment and results. CONSISTENT regular pain treatment works best. As needed seldom is effective. Good luck...
2Dee
Thank you. Yes I very much agree. Frankly, I’ve been shocked by the lack of ability for oncologists to adequately manage chronic pain. We are going to start working with palliative care to manage symptoms. We had one consult in the hospital and already feel like they had some suggestions (patches, etc) that I’m two years no one else had recommended!
No other advise than what you have received here. Your story seems to resonate so strongly on this forum. Perhaps it’s your beautiful family, your young age to be dealing with all this or because of your incredible strength and grace under such severe circumstance. Either way, my family will pray for yours as I know so many others here are doing. I only wish there was more we could do. Perhaps the strength of all our prayers will find a miracle for you guys or at the very least some relief from your pain.
Schwah
This forum does more for me- and by extension my husband and our children- as much as anything. Being able to vent bluntly and honestly to people who understand is priceless...as is knowing that people we don’t even know care- and I feel the same way towards others here. I worry when someone hasn’t posted in a long time. I cry when someone dies. I am so grateful. As for our story...I think it is Joe’s age. He was diagnosed on a Saturday and literally had his first PSA scheduled for the Monday following. As the Dr at MD Anderson told us- everyone is going to want to “throw the kitchen sink” re: treatments at him bc he’s young and was so healthy before he was diagnosed. Whatever the reason, I am so grateful for the support. ❤️
To add to the recommendations:. Peanut butter -- assuming he is not allergic -- is a good source of concentrated calories and protein. Is he on any medicines with known GI side effects?
My hospital told me to eat anything I could just don’t loos weight, I ate a lot of potatoes and gravy, ice cream and pie , and drank a lot of ensure and pink lemonade. Just keep experimenting with foods bland was better for me. 40 months and counting. 🙏🙏🙏🙏
Milk shake for breakfast this morning and he was able to have the whole thing!
Certainly the fine print notes those side effects with a recommendation to contact your physician for weight loss and loss of appetite. Maybe he can counteract some of the weight loss with concentrated calories like ice cream and peanut butter. But, his physician should be informed. It is sadly a risk/benefit decision. Does he starve himself to death whilst treating the PCa?
Update: so actually may have sort of an answer to the cause. Apparently Ipilimumab can cause thyrotoxicosis. I did notice his thyroid labs were off when done on the 20th. Low TSH. High T3 and T4. Because I’m not a doctor and they didn’t say anything I didn’t realize how off they were. The trial RN called this morning to ask that thyroid labs he added at our local oncologist appt today. When our oncologist saw Joe he really just looked at him and mentioned the possibility of thyrotoxicosis. So he ordered STAT brain MRI, a bunch more labs, and now we are waiting for all the labs to come back.
Your husband's digestive issues are complicated and may not be best suited to OTC medications, especially if you don't know what's causing the bloating. I would suggest finding a well-regarded gastroenterologist , maybe one recommend by friends or as a referral from your primary care doctor. Could be SIBO or other bacteria related reaction to digesting foods.
I have similar issues intermittently and there are specific prescribed meds that may address this, including a short regiment of antibiotics. If your husband is able, the GI doctor may require endoscopy or colonoscopy or both to actually see what's happening. I would waste no time. The solution may be readily available, when talking to the right specialist.
I hope that your husband's condition is vastly improved very soon! Remember to be calm but assertive with the doctor. If they aren't responsive, you need to insist. They should have no problem with a GI doc giving an opinion - be sure they get his med records quickly. Good luck and keep us posted!
Thanks so much- appreciate the advise and particularly the reminder to be “calm but assertive”! It’s a few short days later things have changed pretty drastically. Still not eating but not from pain or bloating really- though they are both there to some extent. Now it’s fevers and horrific night sweats (like soaking through clothes several times a night) and extreme fatigue and malaise... At the point we are riding this out, waiting to meet with endocrinologist for thyroid. Brain MRI scheduled Friday, hoping the effects of these meds will get out of his system sooner rather than later...
I am so sorry. Symptoms of prostate cancer can change rapidly and sometimes leave doctors stymied until a pattern emerges. Changes in medications, the disease or one's body's immune system reacting.
I pray that you find out what's happening quickly and that he improves quickly as well. You are obviously an incredibly strong person but remember to take time to recharge yourself and let others help too. You need breaks to face a challenging situation.
I wish calm, clarity and enjoyment for you, your husband and your family.
Hi joekaty,
I just had a horrible 11 days in hospital with a stomach blockage in small intestine that caused all your husbands symptoms of stomach pains, bloating,
but I had lots of vomiting and nausea and I feared what docs would find when they opened me up because I have had Pca since 2009.
But Xrays and CT found a blockage, but when docs did open me they found adhesion of scar tissue between small intestine and previous abdominal surgery, and no tumours, and no damage from previous RT to pelvic area. They said all my internals all looked very good and that I'd recover fully.
I lost 7Kg, or 15.4lbs in 11 days.
Now its a week since I was able to leave hospital and I have not lost any more weight, but I have not gained any weight, even though during last 4 days I have returned to eating the same number of calories as I was before admitting myself to the ED at the hospital.
Before this trouble I was 81.5Kg , 180lbs, with BMI = 24. Now I am 75Kg, 165lbs, BMI 22, and I was very fit and healthy before this trouble, and maybe I will not regain weight easily. I still feel weak and fragile now but am feeling better with each passing day. If I re-gain fitness I without gaining much weight I won't mind because I should be able to ride faster on my bicycle. My weight loss has probably mainly been fat loss.
I have been a keen cyclist since 2006, and have cycled 147,000km since then. I am now 72, but still keen to do a lot more cycling.
BTW, Body Mass Index, or BMI = weight in Kg divided by ( height in metres squared )
For example, I am 75Kg, and height = 1.85 metres, or about 6ft 1 inch.
So BMI = 75Kg / ( 1.85 x 1.85 ) = 75 / 3.4425 = 21.97.
I am 72yo, so I have smaller muscles with less weight than I did at 40.
But fat has increased, so BMI at 40 and before this trouble now has not changed much. I don't mind losing the fat, so the balance of fat to muscle is more like I was at 40. I cannot cycle as fast now as at 40, but hey, its a very fine miracle that I am still alive and can still cycle a bicycle at fairly good speed.
Wives who worry about their husband being too thin may be worrying about nothing, because a man who retains excellent health into old age should weigh less than he did at 30 or 40. IMHO, I don't like seeing men of 70+ who are obviously 20Kg+ overweight, and have obvious problems of personal mobility.
Patrick Turner.
That sounds like you had a very rough time! I’m so glad you are out of the hospital and on the mend!
I agree with you too - am not at all worried about him being too thin. It’s just that when you’ve had cancer for two years and suddenly lost over 20 pounds in roughly two weeks...that kind of acute change is worrisome. His weight itself is perfectly healthy right now it’s just that being dehydrated and malnourished is not.
Hi joekaty,
I think you are right to worry about severe weight loss of a husband who has had Pca for 2 years. But a lot depends on how the Pca may have affected him or where it is active, and doctors that may take time to discover all that.
By comparison, right now I am not dehydrated or malnourished, but am still losing weight, so something has gone wrong with my digestive system and I think I lost all my gut bio - bacteria that we all must rely upon to convert food into energy and 1,001 things we need, and take for granted. I've had Pca for a total of maybe 15 years since 2004, and right now it is well under control, and docs and I don't suspect its found its way into somewhere suddenly to cause change to metabolism of food. The gastric blockage I had seemed to cause total collapse or death of my gut bacteria, and while in hospital there were litres of dark green liquid drained to a bedside bag via a nose tube to my stomach, and its colour changed to black, then a mix of clear water and black particles, and all that time I was eating nothing and my body had switched over to fat consumption to produce blood glucose. I was told my gut flora would soon return when I began eating after the docs removed adhesions of small intestine to previous surgery. These cause a kink in the intestine, and thus a blockage, and any previously eaten food can pile up against the blockage and the peristaltic motion of both small and large bowels stop.
The use of IV drip to supply water kept me well hydrated. I still had zero appetite and nausea and occasionally vomited up the green - black muck that began to back up and fill my stomach. After a week in hospital and after the minor op, the excess liquids in my small intestine began to drop, and I began to very slowly begin to pass whatever was "trapped in the plumbing".
But I am still losing weight, despite eating the same calories as before my stomach trouble. I had been cycling 230km a week before my troubles, so I was making very good use of what I was eating because I had good gut bacteria, but it may take a lot longer for that bacteria to grow up to sufficient quantity to stop my body burning fat excessively. I have no idea if I am also consuming my muscles now or not. I can only keep docs informed, eat as much as possible, and stay well hydrated. I do suffer some hypotension, ie, dizziness when standing after sitting, but I have had to live with that ever since I began ADT in 2010, but not continuously, and nobody knows why, blood pressure and HR are just fine.
So my life goes on surrounded in some mystery of why things are as they are.
Next doc meeting is Monday, blood tests will be examined...….
Maybe there's a good specialist nutritionist who could help.....
Always keep an open mind, try to stay positive,
Patrick Turner.
Any chance of celiac disease? That would require a gluten free diet. Has he had an endoscopy to gauge health of stomach or duodenum?
No- this is really a very acute change and since it corresponds with him participating in a brutal trial at this point I think everyone is n agreement that all of his sudden, new issues are due to these drugs. However, he did have both an endoscopy and colonoscopy about 6 months ago. In retrospect, very helpful bc we know that’s been examined!
Dang so sorry for the Situation you guys are in
Hopefully some Dr will do something to help him
Of course you are the one that knows that this can’t keep going a pound day I know I have no
Answer but you guys have my hopes prayers
And thoughts. Hoping to hear good news soon
Sharon
Sharon, thank you so much for your kind words. Things feel really sad and lonely right now and thankful to have support here. No good news now. Things seem to just be getting worse. Sleeping all the time, not eating, has a fever right now actually, and I’m just up here worrying like crazy. Thank you for your message.❤️
Has he seen a GI doctor? Sever bloating could be caused by a variety of things.
Hi
It would appear that your husband needs a detox to flush out the crap build up from the drugs and medication.
When I was first diagnosed with PC Stage 4 I went onto a personally modified version of the Gerson Theraphy - Diet. See YouTube videos.
Lots of juices is the basis.
Also daily coffee enemas x 2 per day AM and PM.
Aimed mainly at cleaning out my system.
I also switched over to a predominantly vegetarian diet.
Most important to cut out animal protein, bread and grain.
Green vegetables seem to be the best.
Research lectin and ways to enhance the microcondria in the stomach.
Drs are not much use in this situation as prescribing their expensive drugs only make matters worse.
I have now eased up on the juices but change to veg diet has been beneficial.
Good luck
Dave
Joekaty
Prayers that a shift happens soon. I can only imagine how sad you feel.
I do not want to cheerlead. When things do not go the way we had hoped— it royally sucks.
May you find Peace in this impossible process.
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