Question about the nature of ovarian cancer recurrence

jontaejones

Hello all,

 

My girlfriend was diagnosed with Stage III, high grade Ovarian cancer a few months ago and she has been doing better lately, going through chemo and her CA125 has been going down. I am crossing my fingers.

 

I have lurked on this forum, and I have read quite a bit about the topic. I know more about ovarian cancer than she does.

 

In any case, I have noticed that after the initial debulking and chemo cycles have brought the CA125 down and scans are clear and 'NED' is implied, recurrence will sometimes occur 3, 5, 6 years after, at which point the recurrence is typically harder to treat and/or the prognosis will be poor. I know this, and the case studies, and the percentiles.

 

Here is my question, and one I plan to ask an oncologist. If the initial tumor/serous carcinoma is a high grade/grade III aggressive tumor which is capable of reaching advanced stage cancer in months, then how can it possibly lie dormant for a period of 3, 5, or 6 years only to return ... after it has been initally successfully treated by Taxol/Carboplatin?

 

I realize this is not a 'productive' question as I'm sure oncologists the world around have addressed this in some way, but it doesn't make sense.

 

Also, if the patient responds well to chemo, wouldn't it make sense to continue chemo 'forever' as a precautionary measure, as opposed to waiting for it to come back? That is kind of a separate question.

Betsy L

Jontaejones,

I am so sorry to hear about your girlfriend diagnosis. 

I just finished chemo for a recurrance that happened 13 months after my first go-round. I also asked this question. My oncologist said that cells are hiding and they can hide for a long time. It's not a great answer and it certainly doesn't explain why ovarian cancer cells in particular do this. But that's what I was told.

I just started Zejula, which is a chemo pill. I supposedly will be on this for the rest of my life. But even this doesn't have a great survival rate. Which I don't understand. But this is a form of chemo that I will be on forever. 

My best wishes to you and your girl friend!! Tell her to be strong

Betsy

SF73

cancer dormancy

I think this is a great question. One I thought about at the beginning of my chemotherapy in late october. 

As you know chemo is an effective therapy because it targets rapidly dividing. Unfortunately it does not know the difference between cancer cells (all characterized by not having normal checks and balances in place that control and limit cell division) and the normal cells (blood cells, the hair follicles) and hence we experience the side effects.

The reason why us cancer patients cannot be on chemo forever is because cancer cells also have dormant periods where they cease dividing but survive quietly while waiting for the appropriate conditions for growth. It seems like this cancer dormancy is not a very well understood. Here is what wikipedia says: " It is suggested that the disseminated cells choose dormancy when the new environment is not permissive in situations such as cellular stress or a lack of available growth factors.[4][6] These dormant cells can stay in this state for long periods of time and can be clinically undetectable.[6][7] However, these cells can be dangerous because they can strike back years after the doctor and patient believe the patient is cured. They can exist in a quiescent state for many years, but the dormancy period can be interrupted to start proliferating uncontrollably and form metastases that cannot be treated.[6] "

It would be so great if we understood what signalling pathways were involved in helping cancer cells decide to go dormant. Then anyone who responds to the frontline treatment would definitely be cured of cancer. Not sure if anyone can survive being on chemo indefinitely while waiting for the cancer cells to wake up since chemo is not targetted and affect healthy cells (more importantly blood cells). Maybe in smaller doses, maybe in pill forms like Betsy. 

So glad to hear that your girlfriend is responding well to the treatment. She is lucky to have someone who does as much research as you do. Wishing you guys many healthy years together!

 

Tethys41

This is a great question and something I researched tirelessly after acheiving NED almost 8 years ago.  I have found answers that make a lot of sense to me. 

Cancer cells are actually normal cells that have undergone genetic changes due to a stressful environment in which they live.  Most cancer patients, whether they are aware of it or not, have a body that is malnourished and toxic.  One can be quite overweight and still lack essential nutrients.  This environment, in which cells are constantly bathed, stresses the cells and they undergo changes in how their genes behave.  The first thing to go awry is that the mitochondria, small organ-like structures within cells, become damaged and are no longer able to produce energy through aerobic processes (which use oxygen).  In a last ditch effort to survive, these damaged cells revert to producing energy through fermentation of sugar, which is a very primitive form of energy production that produces it in an environment lacking oxygen.  Additionally, the genetic switches that have been turned on do not signal the cells to die or stop producing new cells when they are supposed to.  Due to other imbalances in the body, which cause sticky blood, these cells start to clump together, creating small tumors.  Then the body, due to yet other imbalances like too much copper, iron or growth factors, begins to build new blood vessels to feed the tumors.  A tumor cannot grow larger than 2 mm without a blood supply.  There are doctors and researchers, who recognize cancer as a metabolic disease, but many doctors still believe it is caused by genetic defects.  In a way, they are right, but the genetic changes occur as a result of the metabolic changes. 

So, to answer your question, it appears that although chemotherapy can rid the body of visible tumors, the body started out with severe imbalances before treatment, and chemotherapy itself does further damage.  I think some people just happen to fall into a lucky situation where they recover from chemotherapy and their bodies don't become imbalanced enough to grow tumors again.  But many ovarian cancer patients don't ever gain superior health after chemo because some of the things that contributed to their cancer in the first place, such as diet, stress, and toxic exposures, continue after treatment.  In that case, it seems like it is just a matter of time before the conditions that caused the cancer in the first place will push the cells to the point where they will develop into cancer cells and tumors again.  

Theoretically, we always have some cancer cells in our bodies.  But if we are healthy and things are working properly, they  just pass through our systems harmlessly and never grow into tumors.  But if conditions are poor, that leads to the sequence of events that lead to tumor growth.  Maybe I am just lucky, but I took a very proactive approach to healing my body during and after chemo, changing my diet, my exercise, my stress management, and the products I use.  I consulted with a naturopath who did numerous blood tests and other tests to identify my imbalances and she addressed them with a variety of supplements.  I have been NED for nearly 8 years.  It takes a long time for the body to get sick enough to develop cancer and it takes a long time to make it healthy again.  But is is doable. 

As for staying on chemo forever, chemo is toxic.  Many people develop a sensitivity to carboplatin and can no longer receive that drug.  Additionally, cancer cells can become resistant to treatment and exposing them to the same drugs over and over will reduce their effectiveness, which would mean using other drugs, then other drugs, then other drugs.  This repeated exposure to chemo drugs does further damage to the body and one's health.   

I wish your girlfriend well.  She is very lucky to have you. 

pandagypsy

Betsy L said:

Jontaejones,

I am so sorry to hear about your girlfriend diagnosis. 

I just finished chemo for a recurrance that happened 13 months after my first go-round. I also asked this question. My oncologist said that cells are hiding and they can hide for a long time. It's not a great answer and it certainly doesn't explain why ovarian cancer cells in particular do this. But that's what I was told.

I just started Zejula, which is a chemo pill. I supposedly will be on this for the rest of my life. But even this doesn't have a great survival rate. Which I don't understand. But this is a form of chemo that I will be on forever. 

My best wishes to you and your girl friend!! Tell her to be strong

Betsy

Hi Betsy!

Hi Betsy!

How have you been doing on the Zejula, and how long have you been taking it? I ask since I was on lynparza for several months. After a bunch of undesirable side effects, my CA-125 #s went down. It was at this point I had a "discussion" with my oncologist about continuing lynparza. FOREVER, he says. I can not see taking this FOREVER, quality of life was waaaaaaaaaaaay down. My choice was to live longer & be miserable, or shorter life but one where I  could still feel like "the living" for  a while. I am currently off the lynparza, but am facing rising CA-125 #s. Life is full of choices

jontaejones

Thank you very much for the

Thank you very much for the responses. That explains a lot.

 

Good luck to you all as well.

Betsy L

This was great reading! I really learned a lot!

I think I may look into a naturopath. While I have made some changes - very little sugar, alcohol or soft drinks - my stress levels have not gone down and I have not started excercing again.

Zejula, my PARP inhibitor has done such a number on my platelets that I have to be off them until the count goes over 100,000. They are at 58,000 right now. This will be the second week I'm off of them. When my count goes up, I will start at a lower dose. If that goes well, I'll stay at that dose indefinately. If my count goes down again, I go down to a lower dose. I hope I can stay on Zejula because I feel good on it. As long as my blood stays OK, I'm very willing to stay on this drug.

Thank you all for the great information!

Betsy

Tethys41

Platelets

Hi Betsy,

I hope you can get back on the PARP inhibitors again soon.  My naturopath told me that eating sesame seeds or tahini butter helps keep them elevated.

Good luck.

Betsy L

Tethys41 said:

Platelets

Hi Betsy,

I hope you can get back on the PARP inhibitors again soon.  My naturopath told me that eating sesame seeds or tahini butter helps keep them elevated.

Good luck.

Platelets

Thank you for the recomndation! I will try those!

BabyRN

Tethys41 said:

This is a great question and something I researched tirelessly after acheiving NED almost 8 years ago.  I have found answers that make a lot of sense to me. 

Cancer cells are actually normal cells that have undergone genetic changes due to a stressful environment in which they live.  Most cancer patients, whether they are aware of it or not, have a body that is malnourished and toxic.  One can be quite overweight and still lack essential nutrients.  This environment, in which cells are constantly bathed, stresses the cells and they undergo changes in how their genes behave.  The first thing to go awry is that the mitochondria, small organ-like structures within cells, become damaged and are no longer able to produce energy through aerobic processes (which use oxygen).  In a last ditch effort to survive, these damaged cells revert to producing energy through fermentation of sugar, which is a very primitive form of energy production that produces it in an environment lacking oxygen.  Additionally, the genetic switches that have been turned on do not signal the cells to die or stop producing new cells when they are supposed to.  Due to other imbalances in the body, which cause sticky blood, these cells start to clump together, creating small tumors.  Then the body, due to yet other imbalances like too much copper, iron or growth factors, begins to build new blood vessels to feed the tumors.  A tumor cannot grow larger than 2 mm without a blood supply.  There are doctors and researchers, who recognize cancer as a metabolic disease, but many doctors still believe it is caused by genetic defects.  In a way, they are right, but the genetic changes occur as a result of the metabolic changes. 

So, to answer your question, it appears that although chemotherapy can rid the body of visible tumors, the body started out with severe imbalances before treatment, and chemotherapy itself does further damage.  I think some people just happen to fall into a lucky situation where they recover from chemotherapy and their bodies don't become imbalanced enough to grow tumors again.  But many ovarian cancer patients don't ever gain superior health after chemo because some of the things that contributed to their cancer in the first place, such as diet, stress, and toxic exposures, continue after treatment.  In that case, it seems like it is just a matter of time before the conditions that caused the cancer in the first place will push the cells to the point where they will develop into cancer cells and tumors again.  

Theoretically, we always have some cancer cells in our bodies.  But if we are healthy and things are working properly, they  just pass through our systems harmlessly and never grow into tumors.  But if conditions are poor, that leads to the sequence of events that lead to tumor growth.  Maybe I am just lucky, but I took a very proactive approach to healing my body during and after chemo, changing my diet, my exercise, my stress management, and the products I use.  I consulted with a naturopath who did numerous blood tests and other tests to identify my imbalances and she addressed them with a variety of supplements.  I have been NED for nearly 8 years.  It takes a long time for the body to get sick enough to develop cancer and it takes a long time to make it healthy again.  But is is doable. 

As for staying on chemo forever, chemo is toxic.  Many people develop a sensitivity to carboplatin and can no longer receive that drug.  Additionally, cancer cells can become resistant to treatment and exposing them to the same drugs over and over will reduce their effectiveness, which would mean using other drugs, then other drugs, then other drugs.  This repeated exposure to chemo drugs does further damage to the body and one's health.   

I wish your girlfriend well.  She is very lucky to have you. 

Have u stopped all sugar?

Tethys41

BabyRN said:

Have u stopped all sugar?

Sugar

BabyRN,

I eat very little sugar.  I keep it below 20 grams a day, and that includes sugar in fruit, which I eat very little of, and other foods.  I believe it's the AHA that now recommends no more than 20 grams daily for women and no more than 36 grams daily for men.  

I also occasionally do intermittent fasting, which resets the immune system, or ketogenic, less than 17 grams of carbohydrates daily, for a few weeks. 

I have to admit, when I really cut down on carbs, which I usually keep below 50 grams daily anyway, I feel so much better.