New Member "sue saddened wife" : PSA rising (3005) after two tx xofigio. What's next?

Well MAYBE we will be fortunate enough as the Minister of Health ia appointing someone to be in charge of cancer prevention. So I hope she is ready becauce I am writting a letter to her about mens screening and I am evenn taking it further by asking her to reccomend urologist appointment for for baseline physicals for Dre and psa screening. I also am demanding educational pamphlets printed that are given to us wives so we are armed with what could go wrong and how if or men are left without proper care.In reality there should be a couples appt. What I find disturbing is just how many women do not know that men can get PC and even worse alot of men don't know anything about prostate either.I think because its a"" SEXAUAL "" organ its not something we talk about and it should be.
Moonlitnight; Dave had a double cateract surgery last Jan and somewhere I read that as a result of PC that is common. He always knew he had the one slow growing one but was shocked at the orthamologist that his right eye had one and it was just as bad as the left one. .so we conquered the eye drops and for one of the weeks we had both eyes with difftenr drop numbers...was a challenge .
On the orciotomy it wouldnt have hurt my feelings if Dave had chosen that route, really with the shots you are castrate anyway and at stage 4 there will never be a time that he will be taken off the firmagon. I to am no lover of chemicals. Dave did require a series of 5 radiation blasts to the lower spine last year early spring or I don't think he would be walking right now. Then he just had a single dose to his upper vertabrae as he had a fairly large bone mets that if it has grown inward would again have caused severe damage. I both cases it has helped and I certainly don't want him to be confined to a wheel chair. The one surgery that helped the most was what we call green light and it has basically done the most for quality of life. Basically a turp but done with a laser that coterizes the blood vessels at the same time.It has only gotten better and those 30-40 runs to the bathroom are a thing of the past and he doesn't even get up at night at all and that was anywhere from 6-8 times. So we have had some things that have helped along the way. Now we just have to get rid of that psa and slow up the cancer somehow. If any of you know of anything that has helped in anyway...he has tried the baking soda and molasses , plus the asperagus diet that didnt do anything. But you are willing to try anything and I have a book about eating for your blood type and I am going to find a book by a german Dr that uses flaxseed oil and quark cheese .

Ashley; if you go to the States can you get the names of Breast Cancer specialists there. It may actually be better to get a biopsey done , as yes at 35 no one will probably use mamogram as a diognostic tool. When I talk to my friend I will ask her what has been done for her daughter who is In your age group. They carry the genetics in her family ovarian, breast, brain, leukemia because of this they are watching and actually being proactive with my freinds daughter.So I will see what info I can find out.
Sorry guys I know our womanly talk is not we should be doing on the Prostate thread. BUT that's us girls we have a common ground that makes us reach out to try to help people and well CANCER IS CANCER nothing else we can say really.

I had mammograms (2) when I was 32, pregnant, and had a lump. It turned out to be a cyst. Sue, please join for the chat later today... 8 CST (I just realized that is 10 for me, but my math is awful.) Again, sorry to hijack this thread. We are discussing PCa and what to do for our guys though.

Moonlight...my husband and I are in the States and his was overlooked by our primary Dr. He started feeling tired and I made him go get checked his PSA was 7.1 and the Dr. Thought it was ok no exam or anything 6 mths later it was 8.? You can see his was aggressive too ...we are still fighting this ...So sorry for what you and ur husband are going thru..All we as wife's can do is keep fighting for them......

Deer Hunter (I'm a vegan animal rights campaigner and that name is somewhat frightening!) :) Thanks for adding that. Sending you our best wishes that the "oversight" will somehow be remedied in the future.

My math IS pathetic. Eight CST is 6 PST, not 10.

Post Edited (Moonlitnight) : 2/3/2015 6:47:17 PM (GMT-7)

I haven't heard of it and can't find anything on it either Sue.

Hey Sue, chat was good. If the "chemo" is natural and claims to cure, I'd be very careful to check it out...not that I don't believe in natural therapies over toxic chemicals - I do. I also believe we have been brainwashed into thinking we need drugs at every turn but with Don, we are trying to knock back the existing cancer to a point where the body CAN take over. Not sure what that requires. We do a lot of natural stuff as well. Natural chemos that claim to cure are almost certainly suspect. The proponents of Paw-Paw claim this but there is little evidence to support it - even anecdotal. I see a lot of people trying it on various open-minded cancer sites but not too many have benefitted. I will continue to ask around. I write for all kinds of medicine/pharma/naturopathy firms so I find it weird that I haven't heard of it as my eyes are always open to cancer treatments.

Don had a palliative care meeting. His local oncologist set it up as he was worried Don might experience pain after going off Xtandi and having a sore back. We set them straight right at the beginning that we were attending simply for the benefit of getting in for any needed pain treatment without going through Emerge. There seems to be some kind of confusion between the terms "palliative care" and "hospice." Palliative care simply means care that is to ameliorate pain and not to cure, per se. However, our PC doc made it very clear that plenty of therapeutic treatments are available for patients receiving palliative care. I think this WebMD entry explains it well:

Be assured that you may receive palliative care at the same time that you pursue a cure for your illness. You won't be required to give up your regular doctors or treatments or hope for a cure.

Palliative care may also be a good option if you have a serious disease that has prompted multiple hospitalizations or emergency room visits during the previous year.

Does palliative care mean that you're dying? Not necessarily. It's true that palliative care does serve many people with life-threatening or terminal illnesses. But some people are cured and no longer need palliative care. Others move in and out of palliative care, as needed.

However, if you decide to stop pursuing a cure and your doctor believes that you're within the last few months of life, you can move to hospice. Palliative care does include the important component of hospice, but it's only one part of the larger field.

I'll be thinking of you (hug) and will keep it all crossed for a lower PSA. I look forward to hearing more about "SAF." Moon

Edited later: Sue, could the lady have said "Essiac"? It sounds a bit like SAF and is widely touted as a cancer cure. It was developed by a nurse called René Caisse (Essiac spelled backwards).

Post Edited (Moonlitnight) : 2/5/2015 3:37:16 PM (GMT-7)

Hi I posted quick up date and yes the good news was that small PSA drop. But the worsening mets are quite a concern as well as lymph . Hoping bloodwork is ok for the next xofigio shot on Tuesday. They are calling for a whole wack of snow and are already talking travel bans and we need to be in Napanee for 8:30 am on Monday for new bloodwork. So cross your fingers for us.! I asked what is next and told him I have already started the ball rolling for jevtana and I think he was a bit surprised but if I don't get the funding I am going public. I think people have to know what happens when you are critically ill with cancer . In our case everything wrong has been done and the treatment we have received from somevof thebDrs has been beyond ridiculous. Yesterday in a sense we quit palliative care the appointments are far to long and really Dave never had as many problems until he started with them in Nov. So it is not booked until April and even then if we don't want it its not going to happen. I hope the pain levels are improving from the xofigio and I hope if it works we can ween Dave off the Hydromorph. Maybe then I can have my husband back because the shakiness and the short term memory loss is not good . Does any one have that problem ?

Sue, I will try to find time to bookend your efforts. Your experiences seem to mirror ours. (However, I prefer to put time into research to see what we can do outside of this awful system, and just loving time with Don.) Don seems to be up and down. The day before yesterday (only on Firmagon and Xgeva) he was very pink and healthy-feeling and went for a half hour walk. Yesterday, he woke up with a stomach ache, was white as a sheet, and completely wiped. I encouraged a walk at 4:00 and our daughter came to visit. She saw him on the short way to the park and told me he didn't look so good. I called him and he was almost in tears...very shaky, so she ran down to the park and brought him back. In the evening, he felt much better but still fatigued. He is still losing weight and having trouble eating (but had a big lentil curry stew and healthy salad for dinner).

Fortunately, no pain. The sore lower back comes and goes but the shoulder soreness has completely gone.

Re ST memory loss, yes... very noticeable. I thought it was just the Xtandi but yesterday was not good.

We are off on a week-long trip the day after Don's first Xofigo shot. Trip already booked when date given. Fortunately, it is by car, to a cabin we know and love, with an emergency dept close by.

KEEPING IT ALL CROSSED FOR YOU!

Sorry hit i submit"""their colouring as at times Dave looks greyish and yet oxygen levels are all fine. I hope its just a tummy bug , you know something that is just a normal healthy person type of thing!! Dave never used to get sick no colds or flu never missed a day of work for anything like that in 37 years he worked at the paper mill. I wished he would have if they ever decide that immunity plays any part to this cancer. I order to build immunity you usually have to build it up by having small viruses. Any how your trip is a good idea and will get you away from it for awhile. The only thing with the xofigio Dave did have diarrhea for 19 days after round 1 not as bad after this last turn. Not the kind that makes you run right now but watery and gassy one and 2 times a day. But that is just 1 of the side affects that not every one gets and you Don hopefully doesn't get. I hope this round is better for Dave as long as levels are good for Monday. Anyway the Xtandi exausted Dave ! Thanks for you kind thoughts mine are with you and Don as well...Sue🌞

Oh darn, Sue. At least it is still on the books. Glad the hospital was pleasant!

Hi Sue and best of luck! Don't know what to say other than so called health care in Ontario is disgusting. Are you in the Belleville area. Hang in there!!

Cheers, Doug

Xofigio #3 all done !! Yes Doug we are in the Bellville area . Just found out today that Cancer Care Ontario has apporoved coverage of xofigio. So if you ever needed to get I don't know how many hoops you will have to jump through for approval. But it's a start and they may have to train more radiation technicians on how to administer it. Today in my Urology News they are looking at using xofigio for other cancers like breast and thyroid. So today was a smossle as never got the call to go until 10:15 for 1 pm.
Moonlitnight Dave has been dexamethasone before and uses it for 10 days after the xofigio. I think he tolerates it better than prednisone as he really pouffed up on prednisone. Dave also takes megace 320mlg a day and that is a tumour treatment they used for ovarian cancer. It is supposed to stop the night sweats , give a better sense of well being, inprove apetite and the list goes on and on. .. I am excited for you going on a trip and hope you have a great time!! We went over night to Oshawa on the weekend and by the time I pack up needles, meds and what we needed I think we should have made it worth while and went for a week. But it was fun as we had a uncle give family tickets to Pink Floyd concert and while heavy rock wouldn't have been my first choice for a concert it really was quite good.!! Some guy sitting behind up got kicked out for smoking pot!! Some one the floor seats got kicked out for it to. Silly to pay
for tickets and do something so stupid? So I hope Dave gets few side affects this time and if it knocks the psa down we wouldn't be sorry to leave that 2,582 mark. Any how one day at a time!, Sue