TPI-287 20 mg/m2 SOMETHING BETTER HELP!!!!!!

[edkor]

Something better help I cant hang on much longer.

Please!!!!

[dorothy-thompson]

Dear Edkor

What is TPI? Is it medication?

Are you a carer of someone who has PSP, or do you have it? Which ever it is, I and all the others on this site empathise with what you are going through, it is not easy, just try to hang on in there, keep on the site and have courage, you are stronger than you think.

Take care and kind regards.

Dorothy T

[edkor in reply to dorothy-thompson]

HI ,I am sorry for the delay I needed meds and with the holiday weekend / Saturday I needed pills. I would not make it . TPI As A former machinist it means Threads Per Inch. I am not sure what it means in this case. I believe it means intraveinouis.It has something to do with brain cancer. not sure ? I do have PSP. My eyes, Head bother me. Big Time ! + I am 53 my wife is 48 . We should be thinking about retireing not this sh--!

[Christine47]

We can all relate to the frustration you are feeling, I bet. Western medicine has little to offer and we are in a "Lorenzo's Oil" search for a cure. What are you doing now? Sinemet? Amantadine? Supplements? Diet? Exercise? Methylene Blue? Are you looking at Patricia's Protocol? Or Sharon Comden's? Or Deanna's Protocol? Do you look at Dr. David Perlmutter's web site (or any of the other brain "Pop-Docs")? Or the reviews at ALSuntangled? Or looking at the efficacy of Āyurvedic treatment using Pañcakarma combined with balance exercises for disability and balance in progressive supranuclear palsy ...to name a few. I also think that carefully controlled studies of any allopathic approach has a chance of a snowball in Hell of getting done. ( This is my cynical side talking. Sorry) Good luck in your quest.

Christine47

[Hidden in reply to Christine47]

Hi Christine47

I think the lesson we can learn from "Lorenzo's Oil" (for adrenoleukodystrophy) is that any successful PSP "medication(s)".... (to stop or aggressively delay onset).... needs to be applied BEFORE symptoms appear. This is one of the greatest challenges (real causes and "easy to obtain and test" biomarkers for PSP - and this goes for other progressive degenerative neurological diseases). Even Lorenzo's Oil is only effective (in preventing but usually delaying the disease) if given before symptoms appear. Poor Lorenzo lived about 22 years longer than doctors predicted, but the disease continued to take its toll.

T.

[edkor]

Sinemet , Botox flexeril , Ibuprofen And others too numerous to mention . Then the list of supplements Coconut oil, Cinnamon . Grapeseed ,Tumeric CoQ10 + others It is very easy to become cynical. I just get tired of it all Then there is my family ! SMH Well...........just a little .......PSP ya know.

[Heady]

Hi folks,

Sorry to be flippant, but at this time of night (UK time) there is nothing that beats a nice glass of cold white wine!!!

Lots of love

Heady

[peterjones in reply to Heady]

hi heady I will drink to that mate im out of hospital at last \\ peter jones queensland Australia psp sufferer

[shasha in reply to peterjones]

Dear Reg - why have you been in hosp ital ? I wondered where you were ,,....

[peterjones in reply to shasha]

hi shasha well mate I went away on a trip but when I got back I had this bladder infection and then a chest infection which knocked me about a fair bit I have never had a catheter in before [ that makes your eyes water mate ] but it was put in and taken out then put in again then taken out \

in fact 4 times I was mucked around with but anyway I am ok a bit chesty still I do not think I will be running around the block for a while yet but I will get there thanks for missing me === take care of yourself regards to fred don't forget to stack up the firewood

during the summer months mate see yer peter jones queensland Australia psp sufferer and don't I know it\\\\\

[jimandsharynp in reply to peterjones]

Peter, I've only been cathed once in hospital. They sent a rookie to remove it but I didn't know she was a rookie. She tried removing the cath without deflating the ball on the end that holds it in place. OUCH! I finally said "go get someone else to remove it". She did and it came out painlessly. Jimbo

[jillannf6 in reply to jimandsharynp]

WHAT AR E Y0U 0N ABOUT JIM ? PLEASE?

LO L JILL

XXX

[peterjones in reply to jimandsharynp]

hi jimbo well mate I found the hardest thing was having it put in \and the most painfull made my eyes water

see yer peter jones queensland Australia

psp sufferer

[jillannf6 in reply to peterjones]

take care peter jones we have all miss ed u

;oljil

[peterjones in reply to jillannf6]

thanks jill how did the party go sunday night mate

I hope you all had a great time peternjones quensland Australia

psp sufferer

[jillannf6 in reply to peterjones]

it wasgood only 5 of jus with a couple of apologies the nex t

day but i would do another if asked..

lol Jill

and a :_)

[shasha in reply to peterjones]

ouch is right !! poor you how unfortunate- but pleased you are getting better again,

love to you too and take care

[jillannf6 in reply to shasha]

hi shasha

did you not feel well enough to come to the online party yesterday

i know you get tired int he evenings and the mornings are better for you

so take care and

lol JIll

xxxxxx

[shasha in reply to jillannf6]

HELLO JILL I HAVE TO CONFESS THAT IT WENT RIGHT OUT IF MY MIND AND FREDS TOO -- I AM SO SORRY I REALLY MEANT TO JOIN YOU - HOW DID IT GO ?

[peterjones in reply to shasha]

hi shasha thanks for em mate im just left with my legs wont do as they are told

but I will get over it I expect like all the other things in life which is sent to try us \peter jones queensland australia

[jillannf6 in reply to shasha]

NME TOO I HAV E WONDERED WHERE YOU HAVE BEEN..

LOLJIL]XXXX

[Heady in reply to peterjones]

Hi Peter, glad to hear you're out of hospital. Another small battle against PSP won! Keep it up and enjoy your drink!

Lots of love

Heady

[peterjones in reply to Heady]

thanks heady for your support mate yes mate thats one down I hope will take the others as they come along at the moment I am drinking scheppes lime juice its very nice not a nice as my Tooheys old bit we cant have everything can we matey or xxxx

but im a surviver but as soon as I feel well enough I will hop into it \\ I hope you enjoyed your glass of wine mate and the spell in the garden take care mate and thanks for the words of wisdom mate peter jones queensland Australia psp sufferer

[Hidden]

Just a short response.

TPI-287 is a new type of taxane (sort of chemotherapy drug). It can stop cell division (mitosis). So, it is being trialled as an inhibitor of some human tumour growth (especially in preventing some cancer cells moving to a new home in the body and setting up more cancer growth - metastases).

It is now being trialled as a stabiliser of microtubule dynamics to compensate for loss of tau function in diseases like Alzheimer's and PSP.

(Simplified… Neurons have a sort of internal "skeleton" of protein microtubules in their axons and some dendrites. The tau protein wraps around and stabilisers this "skeleton" and allows the transport of important chemicals/proteins (including neurotransmitters) to travel along the tubules from one end of the neuron to the other (releasing these chemicals for transmitting "impulses"). It's like a little railway system, delivery goods. In PSP and other similar diseases, the tau protein does not function properly ( for reasons we won't discuss), and "comes off" the (skeleton) microtubules, and eventually causes the latter to fall apart, and all the carriages come off and the tau tangles itself and cannot be removed from the neuron, and the neuron dies.

This TPI-287, is supposed to help stabilise the microtubules and help prevent this cascade of events).

I do not really know, but am guessing the TPI stands for the company Tapestry Pharmaceutical Inc, and the number may be the "research" number (287) of the chemical formula of taxane chosen as the most suitable agent for this research. Let me know if this is incorrect.

Cheers

T.

[Christine47 in reply to Hidden]

On Dr. Golbe's May 4, 2014 blog psp-blog.org/ he gives a "Good News" description of the clinical trial which is recruiting for both PSP and CBD sufferers. Fingers crossed.

Christine

[Hidden in reply to Christine47]

Thanks Christine for this link (I occasionally look at these blogs, but not seen them in the last month). As you say, fingers crossed.

T.

[jillannf6 in reply to Hidden]

great as usual T

lol jill

[dorothy-thompson]

Hi all

As our brain is the powerhouse and engine of our bodies amd makes everything "work" , by it's very nature it is so complex that it will probably take another millennium to really understand it. Added to that someone has just said that treatment for any neurological disease to be effective, must be started at the very beginning of the disease , especially in PSP.

Well,can any of us really remember when our loved ones got PSP, what were the signs and symptoms? Covention tells us that it often starts with falls, loss of balance etc, that was true up to a point with my husband but, and it's a big but, I contend that his began some years before that with a complete change of personality. I don't recall ever having read that anywhere. At the time, friends and family joked that my husband was going through a mid-life crisis, he was 66!! And what medico is going to explore that any further?

What I am trying to say in a very inarticulate way is that before we knew where we were, this b----y thing took over our lives and now all we do is eat , drink , and sleep PSP and we are dominated by it. Yes, in the beginning we carried on, we went on holiday, had the trips out, did the family things but now, nearly 8 years on, my husband spends most of the day sleeping, he is incontinent, he cannot articulate any of the thoughts that are still in his head, he coughs and moans constantly, he is a very hard person to care for in truth. In my darker moments I wish he was in a nursing home to be looked after, but because of the way these things are financed in the UK, we would very soon be in penury, and by way, please forget about NHS Continuing Care, it does not exist for the "caring" definition of care.

But on a much more positive note, I have booked a weeks respite in June and our lovely carers and our family will look after my husband.

Much love

Dorothy T

[Heady in reply to dorothy-thompson]

Hi Dorothy, glad you are going to have a break soon, sounds as if you need it. Hope you really enjoy it, what are you going to do? Sleep probably, but try and get out and see a bit of life for a couple of days.

I know what you mean about research of PSP. How can they start to think about curing it, when everyone treats it as an old persons disease! WE all know that it starts years before that. Thinking back, S was showing signs at least 15 - 20 years ago. I didn't know him before that, but I'm sure if I quizzed his ex, she could come up with symptoms as well! They really need to start asking questions from us, about our loved ones early life. Don't hold your breath!!!!

Enjoy your respite!

Lots of love

Heady

[satoristar in reply to Heady]

A truth well spoken. Thank you for observing, in your post, what many of us have finally surmised - that many of the neurodegenerative disorders can, in restrospect, be traced back to symptoms and to behaviors remembered by family, sometimes as far back as early childhood, but shrugged off at the time.

By the time the disease has inevitably progressed to clinical proportions, the doctor "sees" only an old person.

Poppycock!

[jimandsharynp in reply to dorothy-thompson]

Dorothy, Glad you are getting away for a bit to refresh and then back in the PSP fight. Jimbo

[zjillian in reply to dorothy-thompson]

Dorothy T,

I am up early reading this with my husband pacing and pacing right behind me and just wanted to say to you...ME TOO!!!! This morning he keeps saying that he wants to die. Sometimes I just have no idea how I can continue to care for him. I just joined this sight yesterday and it is wonderful just to read that others feel what I feel. We are in Costa Rica because we could no longer afford to live in USA with my father (advanced Parkinson's) and my husband PSP to care for I needed to stop working and then.....There are no support services here but I can afford help.

Just wanted to say "I hear you".

Jill

[dorothy-thompson in reply to zjillian]

Dear zjillian

I have been to Costa Rica, lovely and interesting country. Has no army because, as we were told, it has nothing another country wants, but spends it's money on better things, like health and education. Is this how you see it?

Take care, regards

Dorothy t

[zjillian in reply to dorothy-thompson]

Like everything at all interesting, Costa RIca is both very very good and very very bad. We have lived here 7 years and I wish to live out my years here. The school system is good compared to other Central American Countries, but they don't pay their teachers often and it is not really free education when the children have to buy supplies, books, uniforms, and transportation. I have made wonderful friends and have begun to be humbled (interesting new experience) by the wisdom of their "developing country" lifestyle/culture.

And of course there is the little country version of political corruption which drains the country of resources and money.

I cannot imagine what would have happened to us if I had not brought all of us down here permanently.'We were my PSP husband, my 96 yr.old father, advanced Parkinson's, Chrons etc.,2 dogs, 2 cats and 19 bags.

Jill

[wifemo in reply to dorothy-thompson]

Hi Dorothy -

I was only today thinking back and reckon Tony's attitude changed 20 or even 30 years before the diagnosis.

"Little" things like running the car into a tree (when someone came the other way too far over a narrow road) = lack of being prepared. Go back another 20 years and, as an ex-motorcycle rider, Tony took avoiding action BEFORE a biker came off as he could tell by the way the biker came round the bend what was going to happen!

And there's a suggestion to give medication at the start of the progression?

Enjoy your time off - even if it's only to catch up on your sleep.

Mo

[shasha in reply to dorothy-thompson]

hi dorothy - i must say , by the sound of it you sure do go through it !! so i do hope that you have a good break , u sure deserve it

God bless

love from sharon

[Charliesyoungest]

Dorothy T, my father has PSP, I live in the US. He was placed in a nursing home late last year. I look back years ago and wonder about changes I saw in my dad that relate to something you mentioned...the whole midlife crisis thing! I truly wonder "when" PSP starts and how strongly it affects our loved ones in their early stages? Right now my father is mobile as long as someone is with him and with walker. I take him out to eat and my stepmom takes him out also. He still speaks and can converse, somedays better than not and some days with extensive echoalia (sp?). The NH placement was a difficult decision for my stepmom but a safety one as she still works.

I had to respond to your posting because you are the first I have read that mentions midlife crisis...I so wish we knew more about this disease. Years ago my father and I were so close, then he seemed to change and now I am back in his life and attempting to savor every second I have with him because I foresee what's ahead. Right now his temper is again low and he is the appreciative kind, fun and loving dad I knew years ago. I have blamed myself for the "problem" that was between us for sometime, recently with more and more research on my part I have to wonder if it wasn't the PSP kicking in!?

I apologize for the rambling, your midlife crisis statement hit me and brought back too many memories!

Best of luck to you! This is a wonderful place to read and learn. I rarely post but read daily and it helps to realize others are in the same boat...

[satoristar in reply to Charliesyoungest]

Hi, "charliesyoungest"..... As I replied earlier to "heady", I would also concur with those who have observed and questioned what appeared to be a "midlife crisis". Except that by the time the "personality changes" - or the physical symptoms - appear, the roots of the neurological causes have already long taken hold.

My children also used to think that they were somehow to blame for their father's behaviors towards them. Now, of course, even though the diagnostic causes are too belatedly understood, the wounding of the inner child remains even as they, as now mid-life a

[satoristar]

.....even as the, now as mid-life adults themselves, have learned to understand and to reconnect with him again.

Love really can conquer all.

[satoristar]

.....even as they, now mid-life adults themselves, have learned to come to terms with it all and reconnect with their father. Love indeed can conquer all.

[marytea13]

My eyes are watering Jim about your catheter experience- I have had bad experiences with IV needles buy I now know that there will be a hospital policy on how many times they can try so be aware of this & ask the policy. Mary