Cancer in the blood

[Wongle1]

Hi I'm so sorry I have not been answering I have read but I'm so upset hubby now at stage it's in his blood stream all spine plus ribs and shoulder also in lymph nodes and vesicular area been told they can do radiotherapy for pain infusion for bones and bone scan they have put him on hrt tablets he did have docetaxel but got sepcis so they won't do the other chemo they said they will know if it is terminal in two months if treatments aren't working in don't understand how they can say that he is tired tried oramorph but was wors now he is on some other kind of patch is this really the end coming

[Hidden]

Please try and calm down a bit. I know, easier said than done. In two months a lot can change. Just remember, your not alone, we are all with you.

[Wongle1 in reply to Hidden]

I know but the sad thing is Steve doesn't realise is it the end his alkaline phosphate levels are 600 they were 180 two months ago PSA 160 but just had a blood test today that was 2 months ago as well it was 145 at the very beginning

[teamkv]

I am so sorry. And as a wife I so get the waves of emotions that can sometimes feel that they will totally sink us. Try hard to stay in the moment when it’s the toughest. I think so many here are a testimony of how their predictions and statistics don’t prove true. You and your DH are a statistic of one. So there is no predicting with only one. Stay in this very moment. A big hug to you. And to the rest of us in this. Praying for strength and direction for you.

[dbrooks_h in reply to teamkv]

Anyone, DH is in reference to ?

[ITCandy in reply to dbrooks_h]

Dear Hubby, Darling Husband, Delightful Hunk....

[dbrooks_h in reply to ITCandy]

GESH!

[Wongle1 in reply to teamkv]

Thank you xx

[Tall_Allen]

Has he had Xofigo - or is he too immune-compromised for that? Provenge?

[Wongle1 in reply to Tall_Allen]

What is that

[Tall_Allen]

Xofigo is a radiopharmaceutical that specifically targets bone mets. Provenge is an immune booster.

[Wongle1]

I don't think so but we are in England they have shit all here

[Wongle1 in reply to Wongle1]

Oh don't think he can have that as had lymph node cancer

[paulparry in reply to Wongle1]

Radium223 (xofigo) is available in the UK and has been discussed with me when cabazitaxel chemo finishes.

I am not sure if Provenge is UK approved but could be an option if you were prepared to visit US however the cost is staggering.

1 option that should be considered is Cannabis oil and I dont mean the low THC stuff that is being sold in the UK but ‘real’ Cannabis oil. I cannot find a UK source but maybe there is one in the US or the Netherlands. If anyone does find one then let me know the contact details.

[johnscats in reply to paulparry]

hi read your problem i can get real cannibis oil i have stage 4 prostrate cancer started using cannibis oil last march took a while to get up to a gram a day last scan a month ago showed no mets left on pelvis and lymph system spinal and rib mets staberlized bloods normal if you want it i live in ireland so can posy it best wishes john

[Wongle1 in reply to johnscats]

Please how much would it cost

[paulparry in reply to johnscats]

As wongle asks. How much is it?

Do you know the THC content?

Is it legal in Ireland for you to post it. I would really appreciate a go on this as mets at T4 which is painful abd L1&2 which is affecting my walking and I dont think cabazitaxel is strong enough to clear it.

[Wongle1 in reply to paulparry]

Yes I agree if its ok

[charlesmeyers1964]

whats his psa now. i've been so surprised with these guys who have low psa and have mets through out their bodies. maybe they waited to long for treatment. i've had mine for 10yrs with psa at 28, and that just recently climbed before summer when it was only 11. i was treated as soon as my psa went to 5.7 there is a new trial treatment called PROVENGE not sure it its to late ask your doc. charlie

[Wongle1 in reply to charlesmeyers1964]

Won't know till next week

[johnscats]

hi it cost me 75 euros a gram it comes in 2.5 gram syringes and what ever it costs to post to uk it cant be much as its light j

[larry_dammit]

So very sorry to hear what’s going on, seems like when cancer decides it wants to raise the level of the fight we and the doctors are not prepared to fight back. Fight the good Fight 🙏🙏🙏🙏🙏🙏

[j-o-h-n]

Blimey what a handsome couple! Were you off to see the Epsom Derby that day?

Good Luck and Good Health.

j-o-h-n Wednesday 09/19/2018 6:32 PM EDT

[Wongle1 in reply to j-o-h-n]

No my daughters wedding just 7 years ago thank you xx

[leswell]

Hello you two adorable young people who travel with us elderly in our possibly, mutually sinking ships. Since I keep seeing your lovely photo in my mind’s eye (and since I’m a recent insomniac), I thought I’d write you a note.

It began to rain again a short time ago in the Twin Cities, but happily I finished mowing the top inch or two of the lawn after a month avoiding the task. Having applied sixteen pounds of sun and shade grass seed, the several thousand square feet of former garden is pretty well germinated. Today we struggled with a garage door that wouldn’t open, a slightly recalcitrant compressor with which to fill the riding John Deere mower tires, a grease gun we still haven’t found, two installations of Apple’s iOS 12 one of which was unexpectedly troublesome, and, at the moment, an overnight download of the new Mojave operating system on the iMac which I trust will magically come to pass. And now I’ve neglected to give my husband of 56 years credit for sweating for weeks pulling and digging ten foot high weeds, tilling several times, and raking long hours to prep the soil for the new lawn. He also picked Fortex green beans off the Little Giant ladder and then ascended, no not to Heaven yet, but to the shed roof to brush off ten times our usual amount of acorns (I’m not exaggerating). Amazing how how much work does and doesn’t get done on one acre!

Before “hitting the back forty” myself this morning I found several tempting recipes on the NYTimes cooking site (Sam Sifton, Sept. 24th) and one very short article you must read. It can be located at medium.com, and this is how Sam introduced it: “Now, it’s a great distance from the world of alliums and top-flight American charcuterie, and it is almost impossibly sad, but you should read this Rob Delaney piece on Medium. He is a beautiful writer, conversational and pure. It will break your heart.” It did mine as did your Post, Wongle 1.

Mostly tonight I wanted to wish you two the best during these unimaginably trying days. As for us, Leswell’s PSA has now risen to 322 from a nadir, after chemo/hormonal therapy of 2. Zytiga has not lowered it one iota. Our specialist has dropped the dutasteride (I know, Patrick, not good.) and reduced the Zytiga to two tablets until our next appointment at the end of October. What next? Provenge? Xofigo? I wish. The doc didn’t recommend anything curative but simply sat himself down on the couch in front of us, looked Les in the eye, and informed us that it’s okay to choose palliative.

Today we received a note from a friend who sends scripture, songs, and observations of wild life on a pond outside her apartment’s balcony window. Her scripture today (she is yet another minister’s wife) was from a translation with which we aren’t familiar. Can’t quite shelve the King James Version preferred by our own minister fathers. Permit me to pass along Marilyn’s encouragement of the day to you and everybody. Especially note how this verse begins.

“Never give up! Though outwardly we are wasting away, yet inwardly we are being renewed day by day.” 2 Corinthians 4:16. Go well. Love, Jan and Les

P.S. Waxing on again. I should take a lesson from j-o-h-n!

[Wongle1 in reply to leswell]

Thank you psa doubled in a month now on zoledronic acid and radiotherapy for pain that's all they can do

[Lunbo]

What a great couple! First, however distressing never give up!! Seek out a different ON for another opinion & alternative therapy of which there are many!! Have you tried Zytiga, Xtandi, Erleada, or other new drugs? Our thoughts are with you!

[Wongle1 in reply to Lunbo]

We are in England si it's different on zoledronic acid and radiotherapy for pain castrate resistant in lymph nodes spine had all hormone therapy stopped working docetaxel didn't work got sepsis won't give him any other chemo too risky is this the start to the end I'm devistated