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GgE
 GgE
(@gge)
Joined: 3 years ago
Posts: 240
 
Posted by: @jpizzuto

I finally made something with meat that she likes.  Steak sandwich , and she is eating the whole thing. 

That's good news. What is causing this sudden appetite improvement? Is it the Six-Gentlemen or are you learning to cook?


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John Pizzuto
(@jpizzuto)
Joined: 3 years ago
Posts: 214
 

@gge

I got some really good choice grade, well marbled fillets from Costco. Took a chance on them, as she has been anti meat for a while. I showed them to her and said how would you a steak sandwich. She was ready.

The Five Gentleman supplement is out of stock. They refunded my money.


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Richard
(@magna)
Joined: 2 years ago
Posts: 4
 

Hello, 

We are starting my sister-in-law on Metformin And Syrosingopine. We have both the medicines now but I would like to check on suggestions on dosages to use from people here. She weighs about 120 pounds. What dosages for both Metformin And Syrosingopine would anyone recommend we use?

Thanks,
Richard


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GgE
 GgE
(@gge)
Joined: 3 years ago
Posts: 240
 

Hi Richard, welcome to this forum.

There are some ideas about dosage in previous pages and in the patent filed for this treatment by the Basel researchers who discovered its anti-cancer effects.

There are many factors that influence what her dose could and should be. For instance, if she has normal or low blood pressure, she might be limited to a low dosage of syro because syro may lower her BP too much and this could send her to the hospital.

if she has stomach, colon or any other gastrointestinal cancer or metastases to the bowels then she might get too many side effects from metformin that could limit her maximum intake.

If she has a high cancer burden, i.e. too many tumors or tumors that are very large, she might need a higher dose than somebody who has a small tumor.

The aggressiveness of her tumors may also influence the dosage necessary.

I am not a doctor or an expert but from what I read in general, some people try to get a long term dose of about 1,000 mg to 2,000 mg of metformin a day, split in 2 or 3 doses. Sustained Release (SR) pills seem to be easier on the guts. People also seem to be taking somewhere between 6 and 9 mg of syrosingopine a day long term, also split in several takes.

It seems wise to start very low on both medications and increase their dosage as time goes by. Like 1 or 2 mg a day of syro and 250 to 500 mg of metformin a day to start.

The side effects of metformin may start very quickly but for many people they go away after 1 or 2 weeks. The side effects of syro may take 1 or 2 weeks to be fully felt, so during this time it's better to go up very slowly until she knows she can handle them.

I hope you find sufficient info in these pages.

Best regards


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

Hi!

I have been reading this forum for a while now but haven't written anything until now. My son has started 2 weeks ago the syro-met combo for  DIPG (brainstem glioma). There are some visible improvements already, even if they are not huge. His cancer is very advanced but we hope for the best. He is currently on 3mg syro+500 mg metformin split into 4 doses during one day, one every 6 hours for a 23-24 kg boy. We started the syro at 2mg/day but increased to 3 mg about a week ago. We'll do an MRI in a bit over a month from now (middle of April probably) to see the actual tumor impact. He is also taking Aspirin as suggested by someone on the forum.

Best regards!

 

 


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rgb
 rgb
(@rgb)
Joined: 3 years ago
Posts: 9
 

@adifer

Hi,

can you tell me where you buy Syrosingopine. Thanks

 


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

@rgb

Found it in Switzerland in 1mg pills (carmin is added so they are pink) from the place suggested at the beginning of this thread (suggested by Don Benjamin himself). From there they referred me to Roter Ochsen pharmacy in Schaffhausen. I have an email on the pill case [email protected] They do require a medical prescription for them though.

 


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GgE
 GgE
(@gge)
Joined: 3 years ago
Posts: 240
 
Posted by: @adifer

My son has started 2 weeks ago the syro-met combo for  DIPG (brainstem glioma). There are some visible improvements already, even if they are not huge.

Hi Adifer, welcome to this forum although I am sorry you had to come. I sure hope (and expect) your son will continue to see improvements. Syromet is not a speedy cure but I believe it is effective if given enough time.

Is your son experiencing any side effects? If so, do you have any way to reduce them?


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Richard
(@magna)
Joined: 2 years ago
Posts: 4
 

@gge Thanks for taking the time to go over all that with me. Super useful! 

Will go to 1,500mg metformin with 2 * 3mg Syrosingopine I think. 

To give some further background, her cancer is in colon/rectum cancers at an advanced stage. She has had surgery to remove all they could find of it and has just finished 6 months of chemo. The cancer blood market test she did yesterday shows her cancer marker is back to normal levels now so, hopefully, things are under control. This, therefore, is more to prevent a return of the cancer, and attack any remaining cancer.  

Given the above we will put her on the extended release metformin to ease any gastric issues. 

One problem I'm finding is weighing the Syrosingopine. It's hard to find a scale sensitive enough, perhaps down to the 1/10th of a gram. Does anyone have any suggestions on this?

Thanks for all your help!

 

 

 


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John Pizzuto
(@jpizzuto)
Joined: 3 years ago
Posts: 214
 

@magna:  This is what I have:  https://www.ebay.com/p/11029096978?iid=264368224924

 


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GgE
 GgE
(@gge)
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Posts: 240
 
Posted by: @magna

It's hard to find a scale sensitive enough, perhaps down to the 1/10th of a gram. Does anyone have any suggestions on this?

Posted by: @jpizzuto

This is what I have:  https://www.ebay.com/p/11029096978?iid=264368224924

 

You're welcome. I hope it really helps her.

You need a .1 mg scale, not a milligram scale which are totally inadequate for this.

The scale Pizzuto has is the lowest priced .1 milligram scale available and he seems to be happy with its performance.

However, you have to keep in mind 2 things: 1- it has no warranty of any kind past the first 30 days, so you better test it all you can during those days: does it calibrate well? if I weigh the same item, does it show the same weight every time? and so on; and 2- It is a very delicate electronic instrument and it is usually delivered by hurried drivers that throw the packages up to their trucks and down to the ground. I have seen instruments like this get damaged beyond repair just from careless handling. I would ask the Seller to attach many colored "FRAGILE! HANDLE WITH CARE PLEASE" labels all over the box, and keep your fingers crossed that the delivery people pay attention to the labels.

The next .1 mg scale available I know of is this one, but it is $430. They have 30 days money back and 1 year warranty.

https://www.amazon.com/gp/product/B01GR85IH8/ref=ask_ql_qh_dp_hza

This one ships for free while the 1st one is $20. So, the difference is $90. It is as though you pay $90 for 1 year of warranty.

You may google around and see if you find a better deal.

 

Bess luck!


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John Pizzuto
(@jpizzuto)
Joined: 3 years ago
Posts: 214
 

@gge:  They offered a two year warranty for $21, so I went for it:

https://www.ebay.com/itm/302677926182

The scale was very well packed, and has excellent repeatability.  The scale is very easy to set up, and a calibration weight is included.

 


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GgE
 GgE
(@gge)
Joined: 3 years ago
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Posted by: @jpizzuto

@gge:  They offered a two year warranty for $21, so I went for it:

https://www.ebay.com/itm/302677926182

The scale was very well packed, and has excellent repeatability.  The scale is very easy to set up, and a calibration weight is included.

Did you ask for the warranty or you asked for it?

If it is still available then this must be the best deal.

I would still ask them to label it FRAGILE because no matter how well packed it is, when a package falls it suffers a tremendous deceleration that can throw out of kilter the delicate moving parts, if not the electronic components.


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Richard
(@magna)
Joined: 2 years ago
Posts: 4
 

@gge

Thanks again for the detailed information. Gosh, that got more complicated than I'd originally thought!

Given that I only have a few more days in my sister-in-law's country to sort this out, buying one of those highly sensitive scales is not so practical or cost effective but thanks for the suggestion.

I have found a compounding pharmacist that can put it into 2mg capsules for me, hopefully, tomorrow! By far the simplest solution. Hopefully it all goes smoothly. 

The reason I'm going to go with 2mg per capsule is because her blood pressure is quite low so I thought better to be able to increase and reduce in 2mg doses based on changes in her blood pressure. Looking at a max of 6mg (3 * 2mg) a day with 1,500mg metformin. 

Thanks again!

 


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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 

@magna

Hi Richard,

A simple an effective solution for handling such low quantities as required for Syrosingopine administration:

- Syrosingopine is soluble in Ethanol. Therefore buy highest purity ethanol available from pharmacy (typically >96%)

- solve Syrosingopine in Ethanol, creating a solution of e.g. 2mg Syro/ml of Ethanol. (so we can mix e.g. 20mg of Syro in 10ml Ethanol)

- if the target dose/day is 2mg Syro, use 1ml solution every day in e.g. a glass of water - the best way to pick exactly 1ml solution is with insulin syringe (which are 1ml syringe) 

- store the remaining solution in the freezer (because it is ethanol solution it will not freeze and can be used easily whenever needed).

This is the best way in my view to work with small quantities of active ingredients, i.e. mix in solutions.

I hope this helps.

Kind regards,
Daniel

 


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

For the weighing of syro-I am just using the 1 mg pills, no need to weigh anything 🙂
For the side-effects-my son is in very bad shape (connected to respirator, tube for feeding, tube for peeing, tetraplegic) so a good deal of the side effects we may not even see. But what we did see was that his blood lactate doubled after starting the syromet combo (3 days after and 10 days after were the blood tests). It was a bit high before but now it is even higher. He is well hidrated so there was no more lactate increase. The decrease in blood pressure and pulse is barely noticeble since he is now on dexamethazone for a while so his blood pressure was up anyway and he was taking some medications to reduce it. We did reduce the other drugs after adding syro until we found a good ballance. He was sleepier during the first couple of days but recovered since.
I have no idea how much time is this supposed to work, since there are no tumor markers that I am aware of. And we do an MRI every 3 months.

The MRI itself is also not the best tool for the job since the doctor mesures the outside of the tumor, which I think is great for a solid one, but more of a guide for a difuse tumor like a glioma. One of the worst periods for his deteriorating condition was called a pseudo-progression  because the outline of the tumor remained roughly the same but the interior looked much worse on the MRI (a lot of tiny cysts appeared)-he lost the ability to speak, eat, walk during a month of "pseudo-progression".


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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 

@adifer

I am so sorry to hear about what you are going through Adi and hope things will continue to get better from now on!

Kind regards,
Daniel

 


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

Thanks Daniel!

Do you have any idea how much time is the syromet combo supposed to work? I am sure at some point it will stop working, so I am looking into alternatives in the meantime. But for now I'd like to get an idea on a sort of average. And I know this doesn't necessarily apply to us since the " DIPG outcome" was supposed to come in less than a year and here we are almost 2 years later 😀


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Daniel
(@daniel)
Admin
Joined: 6 years ago
Posts: 1058
 

@adifer

Hi Adi,

It's difficult for anyone to make a statement on that, but what we can do is to reduce the chance for resistance. So if you see it works, it can make sense to start pulsing it. For example, do it 4-5days/week and 2-3 days not. 

Kind regards,
Daniel

 


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GgE
 GgE
(@gge)
Joined: 3 years ago
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Posted by: @magna

I'm going to go with 2mg per capsule is because her blood pressure is quite low so I thought better to be able to increase and reduce in 2mg doses based on changes in her blood pressure.

I hope it works. But even 2mg jumps may be too big if her BP is so low. If you don't go for the alcohol solution Dan is offering, can you get part of the capsules filled with just 1 mg so she can step up in 1mg jumps? They can leave them separate or use a different color capsules to avoid confusion.


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GgE
 GgE
(@gge)
Joined: 3 years ago
Posts: 240
 
Posted by: @adifer

my son is in very bad shape (connected to respirator, tube for feeding, tube for peeing, tetraplegic)

Was his condition this way before the cancer struck him?

Posted by: @adifer

his blood lactate doubled after starting the syromet combo (3 days after and 10 days after were the blood tests). It was a bit high before but now it is even higher. He is well hidrated so there was no more lactate increase.

Did your doctor have an explanation for the lactate increases? They may be the result of cancer cells drowning in lactate as a result of the syromet treatment, then dying and letting the lactate out in the system.

Would you mind posting here the lactate numbers before and after he started syromet?

Posted by: @adifer

Do you have any idea how much time is the syromet combo supposed to work? I am sure at some point it will stop working

The person with the longest track record I know of started using syromet for his mesothelioma in March 2019, started feeling stronger and better one and a month after, and has led a normal life since about the summer of 2019. So far it does not seem to have stopped working for him that I know of. So, I am very optimistic.


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

@gge

He was diagnosed in May2018. In a week he went from perfectly normal to barely able to stay seated on his own and slight swallowing problems. The tumor was roughly 3.7/4 cm. After 6 weeks of radiotherapy+tmz he was in a decent shape again( could walk on his own but slowly, not possible to do fine movements with the right hand, overall a partial hemiparesis on the right side).
TMZ did not yield results, biopsy showed glioblastoma in the brainstem mainly pons, molecular analisys gave no real chemo options (this was performed April 2019). It took about a year of slow and slight disease progression from July 2018 until July 2019 when it accelerated heavily. By June 2019 he was not able to walk on his own (I would have to hold his hand, mainly equilibrium problems, but mostly from 2018 already), right hand was barely usable (became less and less responsive), but other than that he was in pretty good shape. And in about a month and a half he went to respirator, tetraparesis, not able to pee, swallow. Actually he was just able to open his eyes and move them up and down. End of August 2019 the tumor was roughly 6 cm in all directions. He went through a second round of radiotherapy (2.5 weeks) which enabled him to get rid off the respirator. Since he has all sorts of tubes going inside he has a lot of infections, antibiotic, then a week-two he is ok and then relapse urinary or respiratory. He is back on respirator for about a month. He can breath on his own now, but not for very long (rapid shallow breathing, O2 saturation usually goes down a bit, but can last an hour probably on his own).

We are now using a fairly new trial drug specific for his mutation called ONC201 (yielded some results in the beginning, not much now, we are approaching 6 months of use), syro-met and dexamethazone (slowly decreasing). Because of dexa we have to add K, Ca, nexium, etc

Lactate levels are now at 44.3 mg/dL sort of stable (we do it once per week). Used to be 22 a week before starting syromet. And 45.2 mg/dL I think 3 days after starting syromet. Range should be 4.5-19.8. We increased his water intake a lot to get this very slight drop but his condition seems better overall. Our doctor (not exactly supportive of syromet, thinks it probably won't work, but there is not much to lose at this point) says "it could be the metformin and keep him hidrated. If the levels go up more, we should decrease dosage."

 


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GgE
 GgE
(@gge)
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Posted by: @adifer

He was diagnosed in May2018. In a week he went from perfectly normal to barely able to stay seated on his own and slight swallowing problems.

Sorry that you guys have been hit with this curse. I can't even fathom what you all are going through.

Posted by: @adifer

We are now using a fairly new trial drug specific for his mutation called ONC201 (yielded some results in the beginning, not much now, we are approaching 6 months of use)

I don't know anything about ONC201 other than what this report below says, but it seems that part of its work is done through the mitochondria. As you probably know, syromet affects mostly the glycolytic and respiratory parts of the cell, and since the respiration is done at the mitochondrion, there might be some interaction. Whether desirable or not I don't know. Maybe Daniel can shed some light here.

https://www.fda.gov/media/128027/download

I read that "caffeine enhanced the efficacy of TMZ through mitotic cell death by impeding ATM/p53/p21-mediated G2 arrest." I wonder if he was having caffeine (sodas, coffee, tea) while he was going through the TMZ therapy.

https://www.hindawi.com/journals/bmri/2018/5364973/

Syromet proved to be effective in glioma cells LN-229 in the Basel study. Do you know if his DIPG is of this type? The researchers did not test many cancer types so most of them are left to the individuals to test, if they so choose.


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

@gge

Both lines used by the Basel study come from adults. It is very unlikely for a H3K27M mutation to be found in an adult (lower than 10%). Besides DIPG is pretty rare (300 or so cases per year in US according to some study I read), in adults even more so, so I am sure they don't have a sample in Basel.

The ONC201 trials are US only but researchers can purchase the drug worldwide. That's how we got it, since we are not able to join any trial- the disease was way too advanced by the time I recieved the molecular analisys. They have no cured DIPG anyway but have some stable DMGs. It is still pretty new.

If it interacts with ONC I have really no idea. We have seen a very slight tumor reduction after the first three months of ONC (0.1 cm or so) and some very very small improvements (I am not complaining, every little bit counts). But most of them were visible in the first week or two of the treatment and then it stopped with even a bit of regression so far (respiration wise at least), but the initial improvements were kept. After the first week of syromet the improvement is much larger. Some neurological problems have disappeared altogether (mostly related to eye movement). The MRI will be done in a month or so, so I'll have a better idea of what the actual response is. I'll keep you all posted.

I am attaching the only drug they suggested after the molecular analisys, but I could not get that specific one. Any suggestions on similar ones?

There are several mutations present but I have no idea where to post that part. Even what i am doing now is a bit offtopic.

 


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GgE
 GgE
(@gge)
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Posted by: @adifer

I am attaching the only drug they suggested after the molecular analisys, but I could not get that specific one.

Are you in the USA? Copanlisib is FDA approved to treat relapsed follicular lymphoma. So, a US doctor can prescribe it to him off-label.

This site has a lot of info on pi3k and its inhibitors. Maybe some of it would be of help to you. It is mostly on these pages, although there might be more elsewhere:

Drugs and Supplements that Block Fermentation and Help Fight Cancer

and 

3 Bromopyruvate

You may want to search for other forums within this site and post your queries there too to get more feedback. But this is a good site also since you're following the syromet therapy and it seems to be the most promising for him right now.

These are some good places to search for strategies to follow and learn what is known here about them:

https://www.cancertreatmentsresearch.com/brain-cancer/

https://www.cancertreatmentsresearch.com/category/protocols-strategies/

https://www.cancertreatmentsresearch.com/category/treatments/

and other pages you can reach from https://www.cancertreatmentsresearch.com/


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johan
(@j)
Joined: 3 years ago
Posts: 638
 
Posted by: @adifer

Thanks Daniel!

Do you have any idea how much time is the syromet combo supposed to work? I am sure at some point it will stop working, so I am looking into alternatives in the meantime. But for now I'd like to get an idea on a sort of average. And I know this doesn't necessarily apply to us since the " DIPG outcome" was supposed to come in less than a year and here we are almost 2 years later 😀

Hi adifer, sorry to hear about your son. I hope the syromet combo works for him. You mentioned looking into alternatives. Here's an interesting study:

Retrospective evaluation of the outcomes of children with diffuse intrinsic pontine glioma treated with radiochemotherapy and valproic acid in a single center.

https://link.springer.com/article/10.1007/s11060-013-1280-6


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GgE
 GgE
(@gge)
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Posted by: @jcancom

The lactate monitor idea would be one way that the preclinical research could actually provide some sort of a meaningful context to understanding actual tumor activity.

Jcancom's proposed idea above seems to be good and supported by Adifer's lactate numbers, which seem to indicate a very fast response to syromet:

Posted by: @adifer

Lactate levels are now at 44.3 mg/dL sort of stable (we do it once per week). Used to be 22 a week before starting syromet. And 45.2 mg/dL I think 3 days after starting syromet. Range should be 4.5-19.8. We increased his water intake a lot to get this very slight drop but his condition seems better overall.

The metformin manufacturer's insert reads "Metformin decreases liver uptake of lactate increasing lactate blood levels which may increase the risk of lactic acidosis, especially in patients at risk." So, these high numbers may be the result of metformin's action on the liver and the syromet's action on the cancer cells, both of which lead to more extracellular lactate.

 

Johnny, would Shirley let you test her lactate periodically?


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John Pizzuto
(@jpizzuto)
Joined: 3 years ago
Posts: 214
 

@gge

The oncologist does not request LDH reading.  I asked them to add it some time last year.  It was performed for that month only.  I would have to search for the result, but I know it was in the normal range.  Of course, this was before the syro/met combo.  I'll request they add the test to this month's work order.

How much is the lactate tester and strips?  I don't think she would have a problem with it.

 


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adifer
(@adifer)
Joined: 2 years ago
Posts: 21
 

So, as I said we are fighting the increase in lactate (either from metformin or from the tumor, don't really know at this point) by increased water intake (1.5L/day). It seems to be working, since the values are stable at the moment. The clinical improvements are visible and continuous, so we will still be pursuing the syromet. As I said we are waiting for the MRI to give a better understanding of what is actually happening in his head.
3Bp and salinomycin seem very promising, but if they work, they add inflammation. The brainstem is not the place where you want inflammation. That alone could kill him. He has also a shunt in place to drain the CSF from ventricle 4 because at some point (when the tumor enlarged in August 2019) the CSF could not be drained anymore and hydrocephalus was starting.

We are residing in Romania but have been treated in Hungary and Germany too. The open biopsy was performed in Germany, since the stereotactic we did in Hungary did not yield enough material. We can not be easily transported now because of the respirator, so it is Romania for now...

For the moment I am looking into something easy and safe to add to syromet sometime in the near-future (berberine and omega3 are on the short list), some pi3k inhibitor (can't seem to find copanlisib here) and a future solution (1-2 months). 3bp seems to fit the "future solution" but as I said I am very worried about inflammation.


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GgE
 GgE
(@gge)
Joined: 3 years ago
Posts: 240
 
Posted by: @jpizzuto

How much is the lactate tester and strips?  I don't think she would have a problem with it.

Ray Donelly was offering his on Jan 21, 20, I don't know if he still is  ray.donnelly [at] gmail.com

Posted by: @ray-donnelly

I wonder if it wouldn't be of more value for someone else (who's just starting syro-metf treatment) to use my device and strips as that would likely be more valuable? 25 strips is not a lot, and therefore I think we want to get as much value from each strip as we can. I am not sure what monitoring protocol we are looking for here and advice is very welcome. If anyone is about to start this treatment and was interested I would definitely consider posting what I have out to them.

If you can use it by yourself, you'd have much more control than having to wait for the doc to order it, then for the lab results...Then you could know what the treatment is doing to her lactate


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