Dear Rene
I just ordered your book and waiting impatiently to receive it. Your story is amazing and you are a very brave woman.
I was diagnosed with synovial sarcoma in May 2015. I had a tumor of 9cm in my right lung. I was treated in Royal Marsden in London. I went through 6 cycles of Doxorubicin and Ilfosfamide. Tumor got smaller and they cut it out in October 2015. In March 2016 it was already back. I was given Gemzar and Docetaxel but tumor was still growing. We moved to radiotherapy and in October 2016 I was operated again. They removed my whole right lung to keep clean margins. on the 6th of December I found out that sarcoma came back again. I have 3 lumps that are sitting on my liver so they classified me as stage 4. I was given 1 course of yondelis but I know exactly what my prognosis are.
Only yesterday I found out through one of the sarcomas group about you and your story. This gave me hope again.
I am at the end but also at the very beggining on the road of immunotherapy.I am not sure where to start.
I have heard of drugs like Keytruda and Optivo but which one to choose I am not sure. I did some research regading Coleys toxins but apart from the clinicin Mexico no one seems to be doing it.
I have also bee on vegan diet and from what I read you did follow something completely diferent. Would the fish oil tablets/suplements be enough?
I would appreciate any help/comment you can give. I want to start this journey but feel so lost in the amount of informations.
My oncologist will not discuss any other treatment apart from available and registered official for sarcomas. He actually told me that there is no immunotherapy options for synovial sarcomas at all
Thanking you in advance
Urszula
Hi Urszula,
I'm so sorry you've been battling stage 4 synovial sarcoma. I just want to encourage you to think of tackling any new mets as a weeding process. The hope is that the more weeding you do, while activating the immune system to attack the cancer, at the end you will be left with no more tumor cells.
Our book will help you understand the different immunotherapies and how several aspects of the immune system need to be in place to attack the cancer successfully. We also go through the difficulties in getting immunotherapy, such as what you have already experienced - the oncologist saying that there are no immunotherapies available (the immunotherapies are not approved yet, but that does not mean it's not available). I just want you to know that in the US, there are immunotherapy clinical trials specifically for synovial sarcoma patients.
The Coley's Toxins that I had used is no longer being manufactured by the Canadian company that we trust. But there are many very powerful immunotherapy options that are available today. Our book will explain these.
I would recommend you read our book first, as it will answer many of your questions in a very comprehensive way. Then if you have specific questions afterwards, we can discuss more here.
Take care,
Rene
Dear Rene
I just finished reading your book. It is increadible what you have been through and how you managed (against all odds) to cure yourself. Thanks to you everyone can have knowledge now on how to fight with cancer.
I booked appointment with one of te Londons oncologist and I am hoping he will have an open mind and be willing to help me.
The nature of my sarcoma is very aggressive. After the first surgery sarcoma came back within 5 months. It was a very fast growing tumor (in 4 weeks it grew from 3 cm to 8x5 cm). After the second surgery sarcoma came back in 1.5 month. I was told I had 3 tumors. 2 of them were around 3 cm and one was 1cm. Becuase of the experience with the previous one I am assuming that these ones are fast growing too. This is why I agreed to take Yondelis to buy some time.
My question is
Should I be taking Yondelis a bit longer before starting the immunotherpay?Maybe this will stop tumors from growing and cancer from more spreading?
Also if all my tumors are more than 3 cm now I assume that cryoblation would be out of question. Is there anything else I could do? They will not operate as I had operation in October and it came back so quicly. I also took the whole radiation dosage to the place where sarcoma came back.
At the end of the book you mentioned 3 different scenarios if your sarcoma was to come back. Which option would you recommened for a very fast growing tumors?
Thanking you in advance
Urszula
Since it seems surgery and radiation are not options for you, cryoablation is a fast way to destroy the tumor. We would not rule out cryoablation for your 3cm tumors. If one or all of the tumors can be safely cryoablated, it will decrease the tumor load and also the remaining dead tumor will generate a "whole tumor vaccine".
What immunotherapy options do you have currently? Have you contacted the Cancer Research Institute for possible clinical trials in the UK, Europe or US? (website in Chp 16)
If there are immunotherapy options, you need to weigh whether going on Yondelis will jeopardize your chances to go on immunotherapy (ie - if the tumors grow larger or more numerous will that disqualify you from that immunotherapy clinical trial?
If there are no immunotherapy options now, then it is reasonable to use Yondelis to buy time.
Dear Rene
I just started my treatment last Friday. Sadly i did not have a choice as my doctor decided to start with Keytruda first (first treatment was last Friday) and I will have a Nano knife procedure this Tuesday. I am just hoping that It will create the same effect as you described in your book. Professor who will be doing Nano knife procedure explained that this is similar to cryoblation. He will be treating 3 tumors out of 6 I have a the moment. Treatment will be every 2 weeks.
I just wanted to say thank you because if it was not for your book I would have never looked for any other treatments. I would have never pushed so much to be treated this particular way. Everything is very expensive so I had to set up a fundraising website and I am hoping I will have enough money to pay for all the treatments.
Anyway thank you once again for your book, for sharing your experience with us.
If there is anything else I should be doing please let me know. Fingers crossed that this will work :-)
Urszula
We wish you the best in your treatments! Since Keytruda will be given after the nanoknife procedure, it shouldn't matter that Keytruda was given first.
Dear Rene
I started to read your book again in case I missed something.
After Keytruda treatment I started to have a temperature going up to 38.5 C.(101.3) I decided to wait and see what was going to happen. The temperature dropped the very next day and it was stable at around 37-37.5 C. (98-100 F). On Tuesday I had a nanoknife procedure. I left hospital on Wednesday feeling pretty sore. It has been almost 2 weeks now and my next nanoknife procedure is scheduled for this Tuesday. In the meantime I started to feel weak, I developed achy bones and flu like symptoms, temperature going up to 101 F. This has been going on for 5 days now and I am on 6 Paracetamols per 24 hours. When I contacted my doctor (who does ablation|) he advised me to get antibiotics from my GP. I do not want to do that for the obvious reasons. I do not have an infection otherwise I would have known about it.
It just reminds me of last year when this funny temperature started just after my chemo (Docetaxel/Gemzar) and just before my first radiotherapy treatment (June 2016). I had 1 tumor at that time that was quite large (9cm). After 2 cycles of radio temperature went away but it came back 4 weeks later. Again I had it for a couple of weeks and again it went away. The problem with the temperature I had up to my operation in October. No doctor was able to tell me what the problem was. Blood test showed absolutely nothing. 4 weeks after the surgery the temperature came back. This is why they did the pet scan to see if I had an infection. This is when they discovered my sarcoma came back. The temperature stopped for some time but now again I have the very same problem.
Did you experience anything similar or have you come across another situation like mine? Could it be this time just a reaction of my body to the ablation?
I understand this is very difficult and you might not have answers but I am not sure who should I contact regarding this anymore. I spoke to 5 different doctors on different occasions and the only solutions they could give me is antibiots.
Two things come to mind when I read about a fever that persists even with fever-reducing medicines (Paracetamol, Tylenol, Panadol) and no sign of cough/cold:
1) Sepsis - a bacterial infection in the blood (Chapter 9). Note, the only symptom I felt when I had sepsis was the unexplained fever, that kept on recurring even after Paracetamol/Tylenol/Panadol.
2) Body's response to immunotherapy (Chapter 6, section "Receiving the Vaccine", page 94)
Paracetamol (Tylenol, Panadol) will stop the fever without treating the source of the fever, so I personally would not take Paracetamol and instead try to find out what is causing the fever.
SEPSIS - **Sepsis can be life-threatening, so make sure to immediately get tested for this.**
Cause: Sepsis can be caused when you receive anything intravenously and bacteria gets into the blood stream and rapidly multiplies. It can be caused by contamination when inserting the IV or administering the intravenous fluids/medications.
Testing: The doctor will usually do blood cultures to see if you have bacteria in the blood, blood tests to see if you have elevated white blood cells, and check your vitals (blood pressure, heart rate, temp).
Treatment: When I had sepsis, I needed intravenous antibiotics. In my case, the doctor prescribed antibiotics before my sepsis was fully confirmed. I took the antibiotics, as possible sepsis needs to be treated immediately.
IMMUNE RESPONSE:
**Antibiotics will not interfere with immunotherapy or your immune response.**
It could be an immune response against some organ in your body (autoimmunity, side effect of Keytruda). The doctor that administered the Keytruda can test you for possible autoimmune attack to certain organs that are more prone.
It could also just be an immune response against the tumor, which would be a good sign. But, it's important to rule out the other possibilities first (sepsis, autoimmune attack), as those need treatment.
In summary, if I was in your situation,
I would stop taking paracetamol (tylenol, panadol) to see if the source of the fever is persisting.
I would work closely with my doctors to 1) rule out sepsis, 2) test for any autoimmune attack on organs.
I would have no hesitation in taking antibiotics.
Dear Rene
I had ablation of all the tumors but small ones in my lymph gland. They are not even sure if they are tumors or post operation inflammation.
I had a second treatment of Keytruda last Friday as well. They said they will do the scan in aprox 2 months time to see how the things are going.
I wanted to ask you what do you think of adding the NK treatment you had in Germany. I just want to give myself the best chance. Would you add it to the existing treatment or would you wait to see if Keytruda is working?
Also I wanted to ask you what do you think of high doses of vitamin C? Do you think this will be safe enough to introduce it to my existing treatment?
Thank you
Ula
Since you've had nanoknife and Keytruda, with a strong fever afterwards, I would wait to see the effect on your tumors. I personally would not add on NK therapy at this point, as it's very expensive, and if it's done, it should only be done when there is no visible tumors on scans (but possible microscopic tumor). There are also many modern immunotherapies available that are more powerful, available off-label or in clinical trials. Sometimes too much immunotherapy is also not a good thing (see 1st half of Chapter 15).
high dose vitamin C - I had this treatment after my chemotherapy ended, but I do not know how it will react with immunotherapy. I also could not tell if the Vitamin C treatment had any good effect on me.
During this time when you are waiting for your next scan, I would start to plan treatments if the tumors start to grow. Some possible treatments to consider: cryoablation, immunotherapy clinical trials (such as ones that target NY-ESO-1, an antigen that is often found in synovial sarcoma). It will take time to contact/ consult the doctors to plan for possible next steps, to do further testing to see if you qualify for trials, etc.
Dear Rene
Last Friday I had my 3rd Keytruda treatment but just before that I started to have a major pain (8-9/10) where my biggest tumor was. It was ablated by nano knife around 6 weeks ago now. I contacted professor who did my ablation and we will be doing scan this Tuesday.
My question is: If there is anything new or if the tumor started to grow again does it mean that Keytruda is not working? Or is it still the case that I need to give it a bit more time?
Thanking you as always x
Ula
If the scans show the tumor is larger, it seems a bit early to mark that off as tumor growth, since you just had your 3rd dose of PD1. Tumor flare is a real possibility. Do re-read Chapter 10, section "Tumor flare or tumor growth?", pgs 166-167.
Dear Rene
Scan showed that there is nothing new and that the ablated tumors are more less the same size as 5 weeks ago. I would like to believe that this is very promising.
I am still experiencing pain and started to take anti inflammatory pills like ibuprofen that helps a bit.
My question is: Would these pills interact with Keytruda or is it safe to take them while I am on the treatment?
Also I went to see an oncologist who will be in charge of clinical trials in London. It will be run by a company Adaptive Immune (July, August 2017) and they will be focusing on antigen NY-ESO-1. They will take t-Cells from patients body, modify them so they recognise this antigen and put into the patients body again.The problem is (as she explained) patients before receiving modified t-cells will be going through high doses of chemo. They want to destroy patients immune system so it will not reject modified t cells. Patients will have to stay in a hospital for 2 weeks. She compared the whole process to bone marrow transplant.
As far as I remember you had only a vaccine against NY-ESO-1 and did not take chemo? I find it really strange that they are trying to destroy your immune system with the very high doses of chemo.
I did not find any other clinical trials that target NY-ESO-1.
I think if Keytruda will not work my plan would be adding Yervoy to the treatment (small doses of it). I feel that this would be a better plan than clinical trials of NY-ESO-1.
Could you let me know what do you think?
Thanking you as always.
Urszula
That is great that your tumors are stable. How fast were they growing before you started Keytruda?
I do not know whether anti-inflammatory pills will counteract Keytruda.
The trial you describe seems to be adoptive T cell therapy, which is explained in Chapter 6 "Targeting Cancer with T cells". Yes, chemo is given before adoptive T cell procedures. The NY-ESO-1 vaccine that I received does not require chemo before. Adoptive T cell therapy and vaccines are 2 ways to generate T cells - these 2 methods are discussed in Chapter 6, section "Creating T cells in the body with vaccines" (page 91 onwards).
It's not unreasonable to try to add a little bit of Yervoy onto Keytruda. However, do bear in mind Yervoy can cause quite strong side effects that can lead to stopping of treatment. Cryoablation or radiation may be gentler ways to generate T cells against the tumor. For clinical trial resources, you can contact Cancer Research Institute to see if there are any other clinical trials (website in Chapter 16).
Dear Rene
Hope you are well.
I had 6th dose of Keytruda today and also my first scan to see if the treatment was working. Unfortunately the new sides of disease appeared. There are 3 new tumors that have grown within the space of 8 weeks. The largest are 4.5 cm x 4cm. Prof. who ablated the previous tumors is still happy to ablate these ones as well. But because the are new sides of the disease we know that the treatment is not working. There is an option to add Yervoy to Keytruda but is this what you would recommend?
Please do let me know what your thoughts are. I appreciate any comment.
Regards
Urszula
For what we'd do if I had several new lung tumors, please read Chapter 16, section "What I would do if my cancer returns", pgs 281-282.
Also do you think I should move from theNano knife ablation I did before to cryoblation? Would it make a difference?
For our thoughts on Nanoknife (IRE) vs. Cryoablation, read replies #3 "Irreversible Electroporation (IRE)" and #4 "IRE vs Cryo" in this thread: http://www.curingcancerbook.com/cryoablation-large-tumours
Dear Rene
I forgot to mention that all new tumors are within the same space where the original disease started. (right chest cavity). There are no tumors anywhere else so it makes me think this is a great example of lost control in the local area you were talking about in your book.
Also if Keytruda is not working does it mean that my cancer might not have PD-1?
Thank you
Ula
1) The appearance of tumors in the area of the original tumor may be the growth of microscopic tumor that remained after the previous treatment of your primary tumor(s). Synovial sarcoma is well known for it’s microscopic tentacles emanating from the tumor. It's encouraging that there is no widespread disease.
2) I wouldn’t necessarily say that Keytruda isn’t working and wouldn’t assume that your tumor doesn’t express PDL1. It may be more accurate to say that all the pieces are not in place for a successful immune response against the tumor. To understand why PD1 treatment may “not work” and how to get immunotherapy to work, read Chapter 16, section “A Tail of Survival”, pg. 268-272.
Dear Rene
Do you think I should cryoblation instead of Nano knife? As you said you could not find any evidence in 2011 that Nano knife causes the immuno response. I am wondering if this is where I went wrong. The doctor who does Nano knife ablation convince us that the immuno response is exactly the same as when you do cryo.
So combination of this and Keytruda should have worked. My plan is to add low dose of Yervoy (1mg) to the treatment and see what will happen.
Could you tell me if I should pursue dedrintic cell vaccination as well?
Thanking you in advance
Ula
We don't have definitive answers on what is the best thing to do. But, if we were in the situation where Rene had lung tumors reappear, we would do cryoablation followed by PD-1. We decided on cryoablation instead of nanoknife (link we mentioned in our previous response) for it's ability to trigger the abscopal effect (perhaps by generating tumor antigens, and subsequently, T cells against the tumors). If that isn't enough, we would layer on Yervoy. With the availability of PD-1 and Yervoy now, we wouldn't choose to do dendritic cell vaccination.
Another thing to consider is the omega 3/omega 6 regimen (Chapter 15).
Dear Rene
I had my tumors ablated by nano knife again and supposed to start another treatment of Keytruda with low doses of Yervoy last week.
Unfortunately my liver enzymes were really high and they stopped the treatment for the time being. This means that the last Keytruda treatment I had was4 weeks ago now.
They want me to wait another week and repeat the blood test.
My question is
While I am waiting for the liver enzymes to get to normal range could I be helping myself with high doses of Omega 3?
I know you did not recommend it while being on immunotherapy but now when I am waiting I just feel I would like to do something to help myself.
Is there anything else I can do in the meantime?
Because my disease appears and grows really fast I am worried that without immuno I will not be able to control it anymore.
Thanking you in advance
Ula
I personally would not start the high omega 3 in between doses of checkpoint blockade.
The most helpful thing to do now may be things that help to lower the liver enzymes, so that you can receive the Keytruda/Yervoy on time. I haven't dealt with high liver enzymes levels that stopped my treatment, so I don't have personal experience.
But I have heard about milk thistle (supplement), glutathione (supplement) and coffee enemas that may help to lower liver enzyme levels. Those may be some things you can research further to see if it conflicts with any medical condition you have or medications you are currently taking.
I haven't looked into the effect of omega 3 on high liver enzymes, so won't be able to comment on that.
Dear Rene
Thank you again for all the information you are sharing with us.
I am still waiting for the liver enzymes to get better. As recommended I am taking milk thistle every day and trying to drink plenty of fluids while being on prescribed steroids.
Meanwhile even if the last ablation was not even 3 weeks ago I suspect that there is at least new tumor. I could feel it and I contacted the doctor who does my ablations.
He said he can repeat the ct scan this week to see what is happening.
My question is:
Is there a benefit of having a ct scan again when the last one was only 3 weeks ago? Would it be beneficial in case there is a new tumor that needs to be ablated? Or will it just cause unnecessary radiation to the area and could cause the tumor grow even quicker?
Thank you as always
Ula
Early detection of tumors has always been a priority of ours, to enable us to treat the tumors as soon as possible. The risk of increased radiation exposure from CT scans was worth it for us.
Here is some information on radiation from CT scans and how we tried to minimize radiation damage: http://cancerwife.com/content/how-minimize-ct-scan-radiation-damage
Also, since you are in the middle of immunotherapy, it's of importance for a radiologist and/or oncologist familiar with immunotherapy to interpret your scans. Tumor flare (immune activity) can appear as "growing tumor" on scans, and the treatment recommendations can be drastically different depending on the scan interpretation.
Early detection of tumors has always been a priority of ours, to enable us to treat the tumors as soon as possible. The risk of increased radiation exposure from CT scans was worth it for us.
Here is some information on radiation from CT scans and how we tried to minimize radiation damage: http://cancerwife.com/content/how-minimize-ct-scan-radiation-damage
Also, since you are in the middle of immunotherapy, it's of importance for a radiologist and/or oncologist familiar with immunotherapy to interpret your scans. Tumor flare (immune activity) can appear as "growing tumor" on scans, and the treatment recommendations can be drastically different depending on the scan interpretation.
Dear Rene
Hope you are well.
Finally I started the combination of Keytruda and low doses of Yervoy on the 6th of July. My liver enzymes went down and I was able to start the treatment.
Unfortunately i had a month break with not being on any drug and my recent scan showed cancer progression. Within the space of 4 weeks they told me I have new tumors that are 4 cm big. I did ask if this could be an inflammation after the immunotherapy but the doctors are quite sure that these are new tumors as they can see vascular lumps.
They do not want to ablate these new lumps but wait and see what will happen with the new immunotherapy treatment.
IS there anything else out there I could still be doing to help myself in any way? Would immunotherapy work on its own without ablation of these new lumps?
Thanking you as always.
Urszula
Dear Rene
I am sorry to bother you again but I only just found out that my cancer is negative for PDL-1. Does it mean and there is no point of getting more of Keytruda or Optivo?
Should I focus on getting only Yervoy now? Should I be tested for CTL A4 before or does it work on most of the cancers?
Also I have been in touch with Champion Oncology who are offering Caris molecular profile test. Have you heard of this?
Thanking you as always
Urszula
Hi Urszula,
We're sorry to hear of the new tumors.
Yes, we've use Caris molecular profiling. Personally, we don't put too much hope in molecular profiles unless there is a clear and proven link between profile results and drug efficacy.
As for PD-1, some patients are still able to respond even if their tumors are negative.
We wish we could help you decide, but treatment decisions, especially with experimental treatments, are a very personal decision between you and your doctors.
All we can do is to share with you what we would do in your situation (as already expressed in our book).
Some principles we follow are:
1) Ablate as many tumors as possible with cryo, NOT nanoknife because the last time we looked, nanoknife has not shown evidence of abscopal effect/immune effect). If cryo is not available, radiation is an inferior alternative.
2) Ablate as many tumors as possible, do NOT watch and wait. -- because we believe tumor load (amount of tumor) can affect outcome, including possibly suppressing immune response. If ablation is not possible, surgery can be considered. All decisions have to be thought through carefully with regards to morbidity and balance of quality of life.
3) Quell chronic inflammation with omega-3 with strict omega-6 elimination from diet
For just one example of scientific rationale, see this article
http://www.oncologynurseadvisor.com/general-oncology/celecoxib-improves-...
(omega-3 is a COX-2 inhibitor which we believe can work even better than Celecoxib and other drugs that may not penetrate all tissues or stay in the tissues 24x7)
4) Do not assume that immunotherapy is not working just because tumors continue to grow. At the same time, be open minded to alter the immunotherapeutic strategy by layering on other immunotherapies (for example Yervoy, IDO inhibitors, Omega-3/6 etc).
Hang in there!
Best,
Ed & Rene
Dear Rene
Unfortunately the rapid tumors growth made it impossible to cryoblate them. They are growing really quick and it is quite visible now as well.
Are there any other types of ablation I could consider with large tumors? Radiotherapy is not possible in this place as I had maximum doses of radiation in the same spot in 2016.
I started the Budwig diet as I read that this could possibly stop tumors from growing but I have been on it only for a week.
In the meantime I developed a major problem with breathing and I had to start to take steroids. Unfortunately side effect of yervoy were quite severe. Hopefully I will be able to continue with the treatment.
I wanted to ask you as well if you heard of Hallwang clinic in Germany. I contacted them and one of the doctors told me that going down just with yervoy will not bring the results I am hoping for. They do some kind of vaccinations and I was wondering what you think of it?
Also have you looked into cannabis oil as an alternative treatment?
My main problem now is a rapid tumor growth and I do not know how to stop it.
Kind Regards
Ula
Dear Urszula
I hope you are better now and landed on some treatment decisions, I have been following your post and would like to know if you did your nano knife with Prof Leen? I have the same questions in my mind as you do and had to make a choice between cyro and IRE ...my tumour is very large around 9 cm and i am not a candidate for cryoablation due to the positioning and size of a tumour. I would like to know what is the scan revealing now on the tumour you had ablated initially and I have been desperately trying to reach out to someone who has undergone the same methods. It would be great to connect and share our journey. I personally feel the4 vegan diet has helped me a lot along my journey and initially i was able to shrink a tumour, unfortunately, its gone aggressively now and won't respond.
Dear Maya
Could you e-mail me directly on ulian79@hotmail.co.uk. I will tell you exactly what decisions i made.
DIET
I have done part of the Budwig diet before (cottage cheese + flax oil), but I don't feel that it's helped me that much.
Of all the different diets that I've done, the most striking diet with effect to my tumors has been the high omega 3/ low omega 6 diet, along with a short 2 week course of the ketogenic diet. (Chapter 15)
Info on the high omega 3 supplementation: http://www.curingcancerbook.com/diet/high-omega-3-supplementation
Info on the low omega 6 diet: http://www.curingcancerbook.com/diet/low-omega-6-diet
Ketogenic diet: low carbs (20g carbs/ day), mainly get calories from fat (butter, olive oil, cheese, dairy products), moderate amount of meat (~3 oz meat/ meal) - test with ketone urine strips to make sure you reach ketosis (where you burn fat instead of sugar in your body due to the low carb diet).
I was in a desperate situation with my lung tumor growing rapidly when I started the high omega 3/ low omega 6 diet along with the ketogenic diet. I stopped the ketogenic diet after 2 weeks, but continued on with the high omega 3/ low omega 6 diet.
It is possible to do both diets together - it will be a restrictive diet, and the first few days I had absolutely no energy (lying in bed), but after I adjusted to the low carb, I was able to function normally.
It was after I did this diet, that I saw some shrinkage in my lung tumor, and subsequently, after the cryoablation, I have had no more tumors for 4 years. I did the ketogenic diet along with the high omega 3/ low omega 6 diet for 2 weeks, then afterwards, I only did the high omega 3/ low omega 6 diet (with normal amount of carbs).
The diet change may be the easiest thing to do at this point, as you look for other treatments.
GENERATING T CELLS
You've had the checkpoint blockade treatments (Yervoy, PD1) - one very important part is to generate T cells. We're not convinced that nanoknife is able to generate T cells against the tumor as well as cryoablation, so here are some suggestions for how to generate T cells in your situation.
The treatments that have the potential to generate T cells to recognize the tumor (in order of strength):
1) adoptive T cell therapies (Chapter ): Very strong treatment since you're infusing in large armies of T cells against the tumor, but the problem is this treatment is only available via clinical trials. This will take time to get the treatment (finding a suitable trial, having a period with no treatment before you go on the trial, etc). Time is of essence.
2) cryoablation: Even though the doctor may not be willing to cryoablate your large tumors, you can try to get the immune effect of cryoablation by asking the doctor for "cryoablation for palliation". This means that the purpose of the cryoablation is NOT to cure and completely kill the tumor, but to alleviate pain. Since the tumors are visible, they should be easy to cryoablate, if they're not in a dangerous location. The doctor may agree to this.
As a result, you will be able to have some tumor destruction to create T cells against your tumor. Note -- the doctor may not be convinced of this if he/she is not familiar with the abscopal effect of cryoablation. But you can mention this if the doctor still doesn't want to cryoablation with the reasons listed above.
3) Vaccination - It takes a longer time for the T cells to be generated by vaccination as compared to adoptive T cell therapy or cryoablation, so it is not something I would recommend in a time-sensitive situation like yours. Time is an issue, so I would press the cryoablation doctor to do cryoablation in a few easily accessible tumors for palliative purposes, while continuing the Yervoy and Opdivo/Keytruda. Clinical trials often have a lot of logistical hurdles that take too much time to overcome, and may not be ideal in your current situation.
Take it one step at a time!
Dear Rene
unfortunately tumors are too big to be removed or cryoblated. The do not want to do that even for palliation.
I had to stop with yervoy as liver enzymes are too high again and I had a very bad side effects. One week I had pneumonities and 3 weeks later I had mucosities.
Anyway - my doctors have plan to give me Olaratumab with doxorubicin. (I already had doxorubicin in 2015 and they told me back then that i will not be able to have anymore of this chemo). Now they did echo of my heart and apparentely is good so they will try and check my heart after every treatment.
What do you think of this approach? Do you know what the results are on patients treated with Olaratumab? Is it immunotherapy as well?
I also found one clinic in Istanbul where they do low doses of chemo with insulin. They agreed to treat me. They also do other treatments:
high doses of vit C
DSMO
Cesium
Selenium
Hypethermia
Hyprbaric Oxygen Therapy.
I have to pick one approach and I have no idea where to go. It would be great to know your opinion on this.
I would really appreciate your advice
Regards
Urszula
Hi Urszula!
I am not familiar with Olaratumab. But a quick search shows it's a targeted therapy (not immunotherapy) and it blocks a pathway that leads to cancer cell growth.
A summary of the study that led to the approval of Olaratumab and doxorubicin for sarcomas:
http://www.ascopost.com/issues/november-10-2016/olaratumab-in-soft-tissu...
It is a very hard treatment decision to make. Some thoughts I have:
The conventional Olaratumab + doxorubicin treatment has clinical trial data showing that will most likely buy additional months of survival. However, the side effects may be harsh, especially since you will be receiving over the maximum recommended dosage of doxorubicin. It is encouraging that the doctors will be monitoring your heart closely.
On the other hand, the alternative treatments you listed may be gentler to your body, but they may not have any effect on the tumor. There will not be clinical trial data to support the efficacy of those treatments. There may be antedotes, but you will need to see if they are convincing enough for you. In addition, you will be traveling to a different country, away from family, friends and familiarity. If the treatment does not work, will there be difficulty in returning home?
Often when I had to make medical decisions, both options were not good, but I tried to make the best possible decision. Before getting the treatment, I also had to be completely at peace with my decision, no matter what the outcome.
To have peace about the treatment decision, one thing that helped me was to get all the information I needed to make an informed decision. I recommend getting information from the doctors about the two treatment options until you feel you can make an informed decision.
Wishing you much strength and peace,
Rene