Hi Rene and Ed,
Your forum is very informative!! Thank you for sharing and thank you for all your hard work !! Your story is very encouraging and makes me feel hope!!
I was diagnosed stage 1B uterine sarcoma in 2015. I did surgery only that time. The tumor was back after half year and locally advanced in my pelvis. I did surgery again and followed by chemo (gemzar and texotere) and radiation. I was “cancer free” for a year. One year later in May 2017, the tumor metastasized to my lung, two nodules (1.2 cm and 0.7cm) found in my left lung. I did chemo again, doxorubicin plus lartruvo. A newly approved best drug for uterine sarcoma. After that the tumor was stable. But unfortunately the tumor got back again last month. . The CT showed those previous two nodules grew up much bigger. One is 2.5cm and the other one is 1.7cm. And a new one 0.53cm showing up though not sure it’s tumor or inflammation yet.
My doctor offered me other chemo options. I decided to go for immunotherapy. Then I was referred by friends to find you.
Now I am doing SBRT at UCLA to get rid of those two nodules. Will have CT scan in 2 months. But I could not do nothing but waiting, as I know the tumor will be back.
MY questions are:
1) you mentioned you did coley’s toxin At Mexico. Could you please let me know which hospital you did that?
2) I have been trying to see if I could get PD-1 and CTLA4 inhibitors. Before I get them, do you recommend me to do Coley for a certain time?
3) you mentioned in your story you used a vaccine by Dr Old’s help, what that is? Will you recommend me to use it?
4) could you please give me some suggestions at this moment what Immunotherapy i may consider doing before I could have pd-1 inhibitor?
5) You introduced your omega 3/6 diet. And I know I should take omega 3 after immunotherapy. I am getting very skinny and weak even I am afraid I have cachexia because my muscles are all gone even though I walk 1-2 miles whenever I can on a day. So how do you balance your diet for strengthening yourself to have energy to battle your cancer? I worry if eating low omega 6 foods basically I need cut of sugars and meats. Plus I have to cut soy foods because my tumor type is ER receptor positive I need to eliminate hormones intake. I am very concern on what I should eat...
Thank you very much!!
Heather
Thank you for sharing your story and reaching out to us.
Our book should answer questions #1-5 in great detail. The thinking process and scientific basis behind the immunotherapy strategy, as well as practical tips are built up through the book.
Wishing you a smooth recovery after your SBRT treatment,
Rene and Edward
Hi Rene and Edward,
Wish you are all right!! And yes, I have finished reading your so informative book and got the answers with my previous questions to you. Thank you !!
I have just had my CT scan done 5 weeks after my SBRT treatment and two months after my last CT scan. The two lung nodules got controlled and no increase/decrease in size. No new Mets found. Over the past 5 weeks, I did SBRT radiation and a cancer vaccine too. I have one last dose vaccination in 10 days.
I am debating I should start omega-3 right after I finish the last vaccine injection in 10 days or I should wait for 6-8 weeks to see how the results of next follow up CT scan? My oncology doctor asked to take a break now from the treatments I have had over the past one year. But as you said and I also understood that sarcoma will be back for sure sometime sooner or later. I don’t want to wait, but still would like to hear your thoughts.
On the other side, I have got off label use of opdivo ready and not moved to that regime yet, considering side effects of it.
If I was in your situation post-radiation, I would focus on getting the off-label Opdivo right away.
For our thinking about this:
Opdivo - Chapter 7, section "Removing Tumor Defenses"
Radiation + Opdivo - Chapter 11, section "Devising a Combination Strategy" and "Radiation: An Immunotherapy Accessible to All"
Practical tips for getting treatment - Chapter 16
Hi Rene and Edward,
Thank you for emphasizing the importance of opdivo. I thought about it too. Its been almost two months since I have done radiation, will that be too large of a time gap for me to start optivo to seek synergy effects ?
Thank you and I look forward to hearing from you soon.
The best,
Heather
I will
Please see the book chapters listed above.
Wishing you the best!
Hi Rene and Ed,
Yes I have read through those chapters again that you pointed out. I am confident in moving on to get opdivo treatment. I may be able to start in a couple of weeks.
You book is like a cancer immunotherapy bible, it needs to read line by line and repeats reading again and again. Lots of helpful information you have detailed in.
Thank you again and I will keep you updated on my treatments.
The best,
Hong
We hope you do very well on Opdivo!
Take care, and the very best wishes to you!
Hi Rene and Ed,
I started the first dose of opdivo today. That is originally planned for reinforcing the treatment with lung nodules after SBRT radiation.
I have a bad news that two new lesions found in my pelvis, from CT I did last night; the bigger one is about 5cm. The two lung nodules are under control though, not cleared off yet.
I have scheduled both appointments with Cryo ablation doctor and SBRT radiation doctor. If my tumor size are accessible by either of them, which procedure you would recommend me consider first for my pelvis lesions? And any other recommendations?
Thank you and I look forward to hearing from you soon.
The best,
Heather
We're sorry to hear about the new pelvic lesions.
We prefer cryo over radiation due to the side effects. Also tumors cannot become resistant to cryo treatment, whereas tumors can become radiation-resistant.
The cryoablation doctors who we recommend are Dr. Aoun (http://www.cureasps.org/forum/viewtopic.php?f=55&t=835) and Dr. Littrup (http://www.cureasps.org/forum/viewtopic.php?f=55&t=1296).
One thought is to cryoablate the smaller lesion and surgically remove the 5cm lesion.
Do keep in mind that Opdivo takes time to work. Work with an oncologist experienced with Opdivo so he/she can guide you through the treatment.
Wishing you the best.
...but could not find your comments on posts? ...
Hi Rene and Ed,
Which option makes more sense to you?
1) Cryoablation + opdivo + yervoy ;
2) cryo + optivo only;
3) opdivo + yervoy?
Radiation is not accessible to my new lesions in pelvis due to too much critical organs around the mess. Not sure about surgery yet, waiting for MRI scan, but insurance authorization is still pending://
My only concern is that three things doing together (cryo + opdivo + yervoy) may be too strong and may evoke autoimmune reaction? If opdivo only, I was told by my oncologist it won’t work for uterin sarcoma .
Thank you and I look forward to to hearing from you. I need to decide by this Friday.
Heather
Our thoughts on your 3 options are in Chapter 16 “What I would do if my cancer returns”, pg 281-282.
Our thoughts on the efficacy of PD-1 alone: Chapter 16 "A Tail of Survival", pg 268-271.
... okay I will move forward with cryo plus opdivo first. If the combination fails, I will add yervoy, CTLA4 inhibitor.
The best,
Heather
Wishing you the very best!
Hi Rene and Ed,
I noticed you mentioned some details on avoiding environmental radiation especially microwave and cell phone. I will pay more attention on cell phone usage too.
One saying is that if something you don’t put into your mouth then don’t put on your face. I am wondering if you
use any daily lotions or cream? Are there any other small details but maybe very important to know in our daily life as being cancer patients especially the kind difficult to treat sarcoma?
Regarding omega-3 fish oil, I know I should not take them during immunotherapy, how do you think if taking just daily essentiall dose to balance a bit on omega 3/omega 6?
Thank you as always for your very helpful suggestions and points !!
The best,
Heather
We don't have thoughts on lotions or creams.
We don't know what the effect of taking omega 3 during immunotherapy is, so we don't recommend it.
However, limiting omega 6 in the diet is a possibility during immunotherapy: http://www.curingcancerbook.com/diet/low-omega-6-diet
Hi Rene & Ed,
I have started to take Omega-3 and DHA as you took. Currently I am still ramping up my daily dose: Omega-3, 2 spoons each meal, 6 spoons a day and DHA 2 pills each meal, 6 pills per day. I know I have not reached the ratio of image-3/DHA as you did.
I have a question: you took 10 pills of DHA each meal after lunch and dinner each day. Did you just take pills as they are, or you broke them ? As 10 pills one time seems a lot to me, I have not been able to take that many one time://
Thank you and the best,
Heather
The omega 3 dosages are as described, with tips on taking the oils: http://www.curingcancerbook.com/diet/high-omega-3-supplementation
10 pills of DHA (200mg DHA/pill) were poked with toothpick, entire content of pill squeezed into the Medomega fish oil, then taken together.