Category: Immunotherapy

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The Immunotherapy Trial Didn’t Work

The path we were on has lead to nowhere. We are in no better position than the original diagnoses in June 2017 or learning of the disease spreading in August. In fact, our situation is much more inauspicious. A little draconian I know, but that’s how it is.  

Due to an ongoing adverse reaction to treatment, plagued by pain and suffering,  we were forced to have scans earlier than scheduled.  Scans always lead to more scans and scan results for us are a punch in the nose. A punch that makes your eyes water, your vision blur and head pound.  

Lou has more tumours on her liver. The tumours that were already there are much larger. The primary tumour has doubled in eight weeks.

We’re off the trial because it’s not working.

We’re looking for the next best potential solution and may start something as early as Monday.

We anticipated a couple more weeks before we got to this dead end. It does give us more time to activate the next phase which is a win. Whatever that phase is.

There isn’t anything positive to say today. I’m unapologetic because it’s ok to be on your back. As long as you get back up. We had short odds of the trial being a success and we were mentally prepared for it.  We weren’t however prepared for the relentless, unforgiving assault we’re under by Lou’s mutating cells.

We need to lick our wounds and regroup, find a new train line and stoke the engine. Lou’s going through the process of accepting the current situation, a situation harder to digest than a bucket of sand.  We all know she will bounce, she always does.

Onward and upward.

louise decelis on knees but not giving up
Down but not out, just having a breather…

 

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Treatment Update September 2018

Louise Decelis's Blood used for Immunotherapy Trial

Lou’s just shy of seven weeks since going from a stage one cancer patient to a stage four, In a single day. We’ve talked to dozens of subject matter experts during this time and we’ve learnt a stack of information while being simultaneously guided with treatment.

Lou had a face to face with Manuela Boyle on 28 August which was good. I’d had a web meeting with Manuela along with email correspondence. I like Manuela and her approach to cancer, focusing on holistic evidence-based therapies to correct metabolic dysfunction at the cellular level. Manuella focuses on supporting the structure and integrity of collagen tissue surrounding cells. She focuses on blocking the activity of the collagen-digesting enzyme, where she believes a high degree of prevention of metastasis can be obtained. Our focus with Lou is to have her primed for traditional treatment and IO trials. The primary objective of her health is to have a rock solid immune system function; decrease inflammatory markers; decrease platelet aggregation, reduce infection and viral load, improve stress management. Chemo and radiation, along with other medications have wreaked havoc on Lou’s body, we need to perpetually resolve side-effects created by trauma, drugs, pain and toxification

On 5 September Louise got her RGCC results back. In summary:

  • The specific tumour appears to have resisting populations because of the MRP overexpression that can be reversed by the use of inhibitors of ABCG2 pumps
  • The neoplasmatic cells have the greatest sensitivity, in the nucleous spindle stabilizer (Abraxane), in the tubulin dimmer
    polymerization inhibitors (Vinorelbine, Ixabepilone ), in the antagonist (Gemcitabine)
  • lso can be used Everolimus/Temsirolimus as an inhibitor of Akt/mTOR pathway, Afatinib as an inhibitor of EGF r and HER-2.

There are critics of the RGCC test as they are based on CTC’s (Circulating Tumor Cells). Cells that have detached from the primary tumour and flow into the blood or lymphatic circulation creating a secondary tumour. “Despite their rare population, these cells exhibit metastatic attributes and are related to cancer progression.” I’ve spoken with several patients that have been successfully guided by this test so we have nothing to lose in acquiring the data from the results. Particularly with the individual profile of chemotherapeutic drugs and natural substances that are highlighted to be effective.  Presently we are using the results to adjust Lou’s diet and supplements and we are really keen to see if any other testing supports the chemotherapy recommendations.

On 19 September we received the results from the MoST trial. In summary:

  • Louise’s Tumour Mutation Burden (TMB) is “low average,” with a TMB score of  9. Which suggests Immunotherapy might not be effective. Although some low TMB patients still respond to IO.
  • AKT2 protein is amplified. Mtor Inhibitors can help with this. AKT2 is a Protein in the cell, telling the cell to grow. We need to block this signal
  • FBXW7 is defective / there is a mutation in the cell cycle. There are drugs that target the checkpoints (cell cycle checkpoint inhibitors) which is an option
  • TP53 is defective but doesn’t have a treatment at this stage

No real dominating wins with the MoST trial. Two potential options to keep in our back pocket I guess. It hasn’t guided us with anything substantial.

One point that Elgene raised is that there is an IO trial coming up with an Abraxane (Chemo) combination. The RGCC stated that there is “great sensitivity in taxanes (Abraxane).” This means if the current trial gives us no joy, we may have an option with some “proof” of an alternative cocktail.

Louise will continue with her  IV infusions through the trial, on alternate IO infusion weeks.  A Myers Cocktail Infusions will assist to restore energy, encourage healing and support the immune system. The better shape we can keep her immune system in, the better chance IO can teach her own body to fight the tumours. The better shape her body is in, the better the mental fitness she’ll have. Cocktail is:

  • Vit C – 30g
  • Glutathione 500mg
  • Sodium Bic 10ml
  • B 12 (and complex B’s)
  • Magnesium
  • Alpha Lipoic Acid 400mg
  • Saline

Today was round two of Lou’s IO/Paarp trial. We’re already at the halfway point before more scans will inform us of its success. If tumours are stagnating or have reduced in size then we’ll stay on the trial indefinitely. If Lou’s tumours don’t respond then we are on to something else, hopefully as quickly as you can change your undies.

The Paarp is giving Lou fatigue and nausea. Fingers crossed this subsides as her body adjusts to the treatment. Being sick has put a dent in her mental state, with some emotional breakdowns, anxiety and clouds of doubt.

Yep, Lou has been in a shit place emotionally for the last seven days. She’s on her way back now. She seems to fall in a holde at the start of every new treatment cycle as the road ahead looks long and steep. It is. Anyway, she’s emotionally returning to us with a smile on her dial. The fogs lifting, it’ll be good to have her back. Just in time for a few days R&R in Queensland with Lou’s sister Leisy and my bro from another mo, J-boy.

Peace out.

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Immunotherapy Explained, As Best I Can Anways

Louise DeCelis starts her Immunotherapy trial for TNBC next week

Immunotherapy helps your immune system find and destroy cancer cells. I’ve read in detail and it gets pretty technical, my head was spinning. The best summary is that cancer cells have molecules on their surface that can be detected by the immune system (tumour antigens). The immunotherapy directs the immune system to attack tumour cells by targeting the antigens. I hope I got that right.

In clinical trials, doctors use new medications or therapies on small groups of volunteers like Lou to see how well they work. The trials seem to be the last step in the research process before a drug or treatment can be approved.

There are probably more unmet needs for Lou’s TNBC cancer than most other cancers, unfortunately advanced metastatic disease is not cool.

Immunotherapies are pretty new in the scheme of treatments and have succeeded in achieving complete and durable remissions in some patients with cancers previously considered incurable. It’s always nice to have a silver lining on the next part of the journey, some hope to keep you fighting.

From what I have read (although the fine print for the study is like signing a waiver at the motocross track) it seems that Immunotherapies are generally safe, and do not punish you with the traditional side effects seen with chemotherapy.

Immunotherapy is a completely new approach to cancer treatment, thank god because we need a day where nuking your body with chemo is brushed aside. What Lou gets in participating in an immunotherapy clinical trial, is the opportunity to access a “potentially” lifesaving treatment, but help advance this avenue for future unlucky patients that have been dealt a bad hand of cards.

There is only a handful of active immunotherapies have been approved for cancer, most of the promising immunotherapy treatments are only available in clinical trials like the one Lou is starting next week.

Less than 10% of cancer patients eligible for clinical trials participate which means a massive amount of patients miss out, which is pretty sad.

Feel free to give me tips for a better explanation if you are a subject matter expert.

Dom

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Woo Hoo, We Got Into An Immunotherapy Trial

Louise DeCelis was accepted into an Immunotherapy trial today

Yay, Lou was accepted into an Immunotherapy trial today. A tiny win in our cancer war.

The Good
The study might work. Fingers and toes crossed. Pray to your gods.

If the study doesn’t work for us, the knowledge will help people with advanced cancer in the future. That’s a good thing.

The Bad
A very long list of side effects, several pages. But the doctors like to cover their arse and we’ve seen the worst, so bring it.

The Ugly
We may not receive any benefits from this research and it is possible Lou’s condition may become worse during the study. We accept this and are already on the case of alternative options.

Some detail about this Immunotherapy Trial – Only if you are interested.

These studies are run by the big drug companies, in our case, it’s Pfizer, Inc. They pay an organisation to conduct the studies. Luckily for us, one of the locations is Macquarie University, where we will join the study. I guess the big win for the drug company is if they succeed they have the patented right to sell the drug commercially.

What is the purpose of this specific research?

The purpose of this research study is to learn about the effects of the study drugs, avelumab and talazoparib when given as a combination treatment for Lou’s triple negative breast cancer. Avelumab and talazoparib have never been given together as a combination treatment, so the research study will also find the best dose of talazoparib to be given in combination with avelumab. Avelumab and talazoparib are both investigational drugs. (An investigational drug is one that is not approved for sale by regulatory authorities.)

A little bit more about the drug coctail, Lou loves a cocktail

Avelumab is a monoclonal antibody, a type of protein that recognises and attaches to other proteins. Avelumab specifically recognises and attaches to a protein called PD-L1. PD-L1 is found on the surface of some cancer cells, where it acts to protect those cells from being attacked by your immune system (the part of your body that fights infection but which is also involved in fighting cancer). When avelumab attaches to PD-L1 it stops PD-L1 from working and so allows your immune system to recognise and kill your cancer cells.

Talazoparib is a drug that stops the activity of a protein called poly (adenosine diphosphate [ADP]-ribose) polymerase or PARP. PARP is involved in repairing damage to the DNA within your cells. DNA is the set of instructions found within all of your cells that tells them how to behave. Your DNA is damaged all the time by things around you in the environment, and is repaired by several different methods, one of which uses PARP. When PARP is turned off by talazoparib in your normal cells, other methods can still work to repair damage to DNA. However, in some cancer cells, these other methods are broken and cannot be used. When PARP is turned off by talazoparib in these cancer cells, DNA damage cannot be repaired and leads to the death of the cancer cells.

By giving avelumab and talazoparib as a combination treatment in this research study, they are evaluating if the study drugs work together to have a greater effect than if each study drug was given by itself.

A bit to take in there I know. If you don’t understand it all you can ask our little scientist Noah.

A total of about 300 patients are expected to participate in the study. The study is being done at approximately 50 different research centres globally. It is expected that approximately 6-10 patients will be enrolled at each research site.