Please help with ne...
 

Please help with new strategy , refractory Hodgkin lymphoma  

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Inabari
(@inabari)
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Posts: 6
11/11/2018 5:19 pm  

Hi everyone, 

My name is Inaki Barinaga, I'm 34 and from Spain. In 2006 I was diagnosed with a Hodgkin lymphoma 2b, did abvd chemo and got remision for 8 months

After relapsed I tried to cure the lymphoma with some diets and some supplements but at that time I have no much info and finally the lymphoma progressed a lot a I had to come back to the hospital. 

 

There I had mine and eshap chemo, some brentuximab. The disease shrunk but it was there, despite this they did me an autologous steam transplant. I was quite clean but not total. I did keytruda trial and after not big results they purpose me allo transplant.

 

But at this point, I decided to try ozone, hoxsey protocol, different suplements as curcumin, liposomal c, infrared sauna, cannabis... And after 6 months everything was fine, only a small focus in my armpit.

 

I think keytruda needs time and combining with these protocols I have success but since then I have been able to control the disease but since this spring I have more grow, anemia, and itching. 

I had and appointment with my hematologist, he was worried and until pet scan he gave a a round of cyclophosphamide with steroids and see what they see in the pet scan.

 

So I suppose they want to give chemo again as cyclophosphamide or bendustamine with brexuntimab to try the reduce or eliminate the disease. After they possibly suggest allo if i am clean or nivolumab as maintenance.

So, meantime I'm taking dca and learning in this blog how to maximize. I take b1, caffeine , omeprazol, tomorrow I'll speak with escozul,... Do you think could help with Hodgkin lymphoma? When I achieve 20 mg I feel as pain in the swelling lymp nodes, I felt more swelling after taking it and don't know if it's good sign or not...

I have contacted with care oncology center to try to starve my lymphoma, or try to maximize the chemo treatments or whatever can help me in my situation. 

Would you help to maximize my possible next chemo treatments? Would you incorporate dca with escozul, honokiol, between treatments and inmunoteraphy?

A lot of info that there is in this awesome blog, 3bp,2 dg, drugs. Combinations,.. Is very overwhelming at this moment and not easy to choose without mixing wrong things.

 

I'm sorry for this long thread, hope this could be a start to take correct decisions in my next weeks.

Looking forward to hearing from you soon 

Inaki 


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marcosbomber901
(@marcosbomber901)
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Joined: 2 years ago
Posts: 36
15/11/2018 10:51 pm  

Hi Iñaki.

I am spanish as you and reader of this incredible blog.I can put you in touch with the doctor who leads the treatment of my wife,based on the exposed systems in this blog. Contact me by private.


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marcosbomber901
(@marcosbomber901)
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Joined: 2 years ago
Posts: 36
15/11/2018 11:03 pm  

Iñaki excuse me

Can you give me your  facebook .Can you not contact for private


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Inabari
(@inabari)
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Joined: 5 months ago
Posts: 6
15/11/2018 11:16 pm  

Hi Marcos!

 

Thanks a lot for reply my thread. I'm Facebook my name is Iña Bari and my email is [email protected]

 

Do you know why I can get private messages?

Warm regards 


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Daniel
(@daniel)
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Joined: 4 years ago
Posts: 285
18/11/2018 10:23 pm  

Dear Inabari

First, here is a summary on how the conventional approach to treat and the related options: Management of Relapsed and Refractory Hodgkin Lymphoma in 2018 https://jamanetwork.com/journals/jamaoncology/article-abstract/2687374

I will include the paper as attachment here, in case you do not have access to it.

I understand you already tried checkpoint inhibitors which are some of the last line, and u are now going to Cyclophosphamide or Bendamustine (Treanda) with Brentuximab (Adcetris). Both Cyclophosphamide and Bendamustine are alkylating agents, so they should work well with 2DG metronomic (2DG-M), in the sense that 2DG-M is expected to enable or increase the effectiveness of this type of conventional therapies.

Due to the relevance of CCR5 in hodgkin Lymphoma (Ref.) Maraviroc may help https://www.cancertreatmentsresearch.com/an-anti-hiv-drug-reactivates-the-immune-system-to-against-cancer/

Your report regarding the use of DCA and the swelling that occurs following that it’s essential in my view. I checked what is the metabolic profile of hodgkin Lymphoma and here is a very good article giving an important message https://onlinelibrary.wiley.com/doi/full/10.1002/ijc.29934 The relevant message is found directly in the title: “Hodgkin and Reed–Sternberg cells of classical Hodgkin lymphoma are highly dependent on oxidative phosphorylation”.

Based on this, if I would be you I would immediately stop DCA and never touch that again. That is because Hodgkin lymphoma cells are highly dependent on a well-functioning mitochondria, and that is exactly what DCA helps. So in other words, there is a good chance for DCA to support Hodgkin lymphoma growth.

As the article above suggest, reducing mitochondria function in Hodgkin lymphoma cells may be the right treatment strategy. Here is a list of mitochondria inhibitors that could be accessible for most of the patients https://www.cancertreatmentsresearch.com/a-list-of-mitochondria-inhibitors/ Of this, Metformin is one of the most accessible, as well as Doxycicline. I would probably even add two mitochondria inhibitors at the same time as a part of a more comprehensive treatment protocol.

Therefore, in my view, combining the chemo that the oncologist is proposing with 2DG metronomic and with at least two mitochondria inhibitors, may be a good approach.

Using Tranilast and other NSAID medication (such as Aspirin) may help reduce fibroblast that are feeding tumor cells with lactic acid, for respiration.

Because hodgkin Lymphoma is relying so much on respiration, there is a good chance that MCT1 are very upregulated, which means that they may be highly sensitive to 3BP https://www.cancertreatmentsresearch.com/3-bromopyruvate/. However, when using 3BP there is a high chance of TLS that can be even lethal and it is specifically possible in blood cancers. Here I wrote a short post on managing TLS https://www.cancertreatmentsresearch.com/tls/ but the best way to address this to always increase the dose of treatments step by step whne we know that there is a risk of TLS.

I hope this helps and if you have questions please let me know.

Kind regards,
Daniel


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Inabari
(@inabari)
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19/11/2018 9:41 pm  

Good night Daniel, 

 

First is need to express how I appreciate your comments. While I explore the possibility to add 2 dg drug in my protocol and two mitochondria inhibitors, could I ask you about some supplements that I'm thinking to start as are easy...

And very thanks to give me the if dca because I was insisting with the dosages and what I can do is fuel this when the disease is very active now... Thank you!! 

1-i have bought several bottles of. Honopure, after reading positive things to assist killing steam cells during chemo. Do you think it would be possible to to 3g daily the days of chemo and between them?

2-i have also bought maitake D fraction, coriolus mushroom to assist my inmune system at this time

 

3-would you add in my case high omega 3 dosage? Including the chemo days?I suppose to take tumeric golden paste a lot green tea between chemo is a good strategy too 

4-as hl typical simptom I suffer a heavy itching episodes. Does this mean that some antihistamine drugs could halt this and attack hl too?

Warm regards! 

Inaki 


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Daniel
(@daniel)
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Posts: 285
19/11/2018 10:29 pm  

Dear Inaki,

You are very welcome.

1. I like Honokiol and I think it can be used specifically in combo with Omega 3 - I see no reason why should not be used in combo with chemo but when I have the time I will check more details on this

2. Coriolus is one of my prefered mushrooms for immune system

3. Omega 3 in about 3-5g/day maybe should be good. Curcumine also. 

4. Cimetidine seems to be a very good solution for u https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1600342/?page=1 and its good in general as anti-cancer but always check interaction with other drugs here  https://reference.medscape.com/drug-interactionchecker?src=google

Kind regards,
Daniel


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Inabari
(@inabari)
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20/11/2018 12:12 am  

Thanks for your fast reply and clarifications. 

 

Have a very good night. 

 

A big hug 


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Inabari
(@inabari)
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Posts: 6
10/12/2018 12:15 am  

Hi Daniel,

 
I'd like to update my status and treatments after pet scan and first chemo 
 
The pet scan was a little awful, I had all my right part of chest full of lymphoma, armpit, collarbone and less in my left part of chest. 
 
The selected chemo. Is brentuximab + bendastumime and corticoids. I did a two day fast before chemo and both days and after a couple of days I went to E.R because I was no able to breath.
 
After some tests they saw that my right lung was filled up of fluid and there was too in the heart. So they stated draining and it and I'm in the hospital to fix this problem, they are happy because it's because the large masses are dying, and this is the side effects. 
 
My idea is continuing to doing the fast every cicle of chemo to improve the effectiveness and help to my body. When I returned home I'm taking again metformin, atorvastatin, mebendazole and flarin.
 
Following your post ideas I'd appreciate your opinion about these questions.
 
1-as mitochondria inhibitors I'm taking honopure, metformin,... Would you add doxycycline? Coc suggested me mebendazole and rotate with doxy but I wonder if it'd be a good idea to add this inhibitor too if it's compatible with my current chemo. If you think that I can add another different drug, please let me know 
 
2- as the chemo is alkaline base... Would be a good idea to take more than 20 mg of omeprazol? I suppose that it's good idea to try to alkalinize my body to increase the effectiveness of the chemo.
 
3-i have livon liposomal c at home, how many grams would you take between chemos to put more pressure to the lymphoma? In the morning I do ozone rectally, in the afternoon I can rotate liposomal c, or high dosage of oral curcumin.(I drink green tea during all day) 
 
4-do you think LDN can help with Hl? I read that possibly yes, but maybe it's not worth to add more and more things... I wonder the same thinking to add melatonin, as I'm not sure if it's a good addition in my case.
 
5- reading about hl I found that blocking autophagy could be a good idea too, do you think to take for example 5mg of desloratadine can be beneficial? 
 
For the moment I'm going to wait before considering 2dg or 3 BP because it's hard to get it from Spain.
 
Warm regards and thanks for the your help and time. Inaki 

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Daniel
(@daniel)
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Joined: 4 years ago
Posts: 285
10/12/2018 11:45 am  

Hi Inaki,

Thank you for the update. Answering your questions:

1. It could make sense to introduce Doxy as suggested by COC specifically when dealing lymphoma - just make sure you introduce probiotics too

2. Taking a higher dose of Omeprazole, or even better Lansoprazole (also a PPI) would make sense when combining with chemo that is weak base

3. I do not have a strong opinion on liposomal Vit C. Maybe this website can answer your question  http://qualityliposomalc.com/index.html

4. Yes, I would add LDN

5. Chloroquine or Tetrandrine for autophagy 

Other remarks:

1. If would be me, I would not wait with implementation of metronomic 2DG after chemo - it should not be difficult to access when location is Spain

2. 3 days before chemo, I would stop all the treatments that slow down cancer cells (including Metformin etc.) for best chemo effectivness

Kind regards,

Daniel

 


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Inabari
(@inabari)
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Joined: 5 months ago
Posts: 6
11/12/2018 12:07 am  

Good night Daniel, 

 

Thank you for your suggestions. When you say that it could be bought 2dg, are you thinking to buy it from  http://www.sigmaaldrich.com/catalog/product/sigma/d8375?lang=en&region=NL or can I find from another source?

I'd take orally, I weight around 55-56 kg since I take coc protocol, I think metformin and atorvastatin don't help too much to gain kgs,... Is correct if I calculate that I'd need around 14 gr per month if I take 1 gr another each week?

When you suggest to stop metformin three days before chemo, do you include honopure and doxy too? I'm not sure which products that I take in coc protocol plus honopure could produce this...

The last question, is a good idea to take the morning before chemo the lansoprazole (what dosage?) and paracetamol for example?

 

A big hug 

 

Inaki 


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Daniel
(@daniel)
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Joined: 4 years ago
Posts: 285
11/12/2018 12:54 am  

Dear Inaki,

On 2DG: I was referring to using 2DG metronomic in intravenous form - this is available at a compounding pharmacy in Germany and there are clinics in Europe using it. I think Marcos can help you with pointing you towards the right direction as I saw he did with other Spanish speaking people. But I can also put you in contact with Spanish patients living in Germany and convincing their oncologists to help them with adding 2DG after chemo.

Yes, a few days before chemo I would stop all drugs that can slow down chemo, including Doxy.

Regarding Lansoprazole, yes, in my view it would be a good idea to take is prior to chemo. Same with Paracetamol. The Lanzoprasole dose would be the maximum dose as defined on the drug indication list. 

Beyond the above, drinking coffee before chemo should help to increase chemo access into the tumor. Niacin is also an option - a supplement - that would help chemo penetrate the tumor better - people taking it have to be carefully as at a too high dose it may cause  some side effects (flushes).

Kind regards,
Daniel

 


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