Colon, Liver, Lungs, Part 2
Followig the good news of the scan showing good reduction in tumors, the side effects continued. Hand/Foot syndrome continued to be intense. She had some dizziness which resulted in her walking with a walking stick. It is working but it is taking it's toll on her.
We had a re-exam with the holistic oncologist who discussed metronomic chemo with us. Has anyone here been treated in this way?
I have always held on to the hope that the chemo might lead to a point where resections are possible and that glorious NED is achieved. Well, he told me that he didn't see that as likely. That news has put me in a funk that I am trying to break out of. I am a "glass half full" person. We are keeping the prayers coming and I am letting my hope rebuild. There are too many living examples of that right here on this forum!
The holistic treatments, as always, perk her right up and helped her with energy, but the hand/foot syndrome is slow to heal.
She had labs done on Saturday. We had a good weekend and geared ourselves up for Monday's chemo. On Monday morning our oncologist was not in. He works constantly and it was a rare day off for him. He had called in to the nurse supervisor in the morning and she had Pam as her patient that day. After reviewing the WBC from the labs, a hair under the low normal threshold, and the hands, she had another oncologist check her. They agreed that it was best to postpone chemo for a week as if they went ahead and treated and the symptoms got worse, they may have to withold treathments for several weeks. It seemed prudent and postponed Chemo 7 for a week with labs again this coming Friday.
In reviewing her labs, I was thrilled to see that her CEA dropped from last month's 430 to 125. It had reached a high of 1298 a few months back. This seems pretty significant to me, but being new to this I lack experience and context. Is this as good as it appears?
Her AST is well within the normal range with her SLT just above the high, normal threshold.
I need to learn more about metronomic chemo to see if we should ask the oncologist about it, and when we should ask.
Dan
Comments
-
YesSnapDragon2 said:By metronomic, do you mean
By metronomic, do you mean low dose every single day of chemo?
Yes, that pretty much summs it up. This article describes it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156829/
I am still researching this...
Dan
0 -
which daily drug is she on?DanNH said:Yes
Yes, that pretty much summs it up. This article describes it. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4156829/
I am still researching this...
Dan
which daily drug is she on? Asking as someone who possibly might have to switch to a drug that is orally so from home
0 -
It is a very good option
It is a very good option (less toxic to the system). Many times hitting hard and aggressive with breaks to let the body recover is not affective so much as mild every day.
You have to go after the stem cells ect, keep immune system high, inflammation low, blackade those cancer signaling pathways while on chemo thats kills the active cancer.
What is her MCV?
0 -
Current Treatmentsabita said:which daily drug is she on?
which daily drug is she on? Asking as someone who possibly might have to switch to a drug that is orally so from home
She is currently on Folfiri with Avastin and luecorovin. They are probably going to reduce her dose by 20% next treatment.
Dan
0 -
MCVSnapDragon2 said:It is a very good option
It is a very good option (less toxic to the system). Many times hitting hard and aggressive with breaks to let the body recover is not affective so much as mild every day.
You have to go after the stem cells ect, keep immune system high, inflammation low, blackade those cancer signaling pathways while on chemo thats kills the active cancer.
What is her MCV?
She is currently 95.9.
0 -
Try to get it at 100 or aboveDanNH said:MCV
She is currently 95.9.
Try to get it at 100 or above. beta glucan 1,3/1,6 and PSK PSK PSK
0 -
I never heard
I never heard of that kind of chemo. Are there studies for it? I am always going to this way if study actually prove a benefit or not. In Germany there are so many "doctors" that claim something without a study, giving people hope, and then nothing. So, if you do find something let me know.
I hope the side effects will disappear soon or get better. The good thing is that the liver enzymes are in a good range. So whenthe,controlthe side effects she will be good for the next chemo.
My teacher told me that imaging is more important than CEA. But imaging shows success
I think they call it partial response for now and that is really good.Tbh I do still hope that my dad will get NED again. So I understand that you also hope that. But my dads doctors say that they never saw a cure andI think that they never saw that kind of cancer before too. I read from some people that after 2 years on Folfiri and Avastin they did not find anything on CT anymore, so NED. This is called complete response. So let us hope together for a complete response, that the chemo will work long and then the cancer cells will get tired and do what normal cells do: apoptosis, programmed cell death.
Tueffel
0 -
Tueffel, research metronomic
Tueffel, research metronomic and also chronomodulated. The best evidence for chronomodulated is from a study by Dr. Sun and Dr. John Marshall out of MD.
0 -
Infusion 7
Yesterday was infusion 7. Her hand/foot syndrome has improved and her WBC was above the threshold so she was treated. It took multiple sticks to access the port but the third time was the charm. It was very stressful to see the port not working because on her first scheduled chemo the port failed and had to be fixed. This required a second surgery from which she did not recover fully for Chemo 1. It made that infusion all the more difficult. We were very relieved to see it working properly. The Lidocaine and Prilocaine cream that she was prescribed to numb the skin over the port really helped this round given the multiple sticks. She puts it on an hour prior to infusion and covers it with plastic wrap or an infusion needle dressing.
She got her Folfiri infusion and as he suggested, the Doc cut back her fluorouracil by 20%. As someone else posted on the forum, the second Folfiri was not as bad as the first. She had some tylenol for her headache (a side effect) and got a shot of atropine in her arm to ward off diarrhea.
She was pretty wrung out following her treatment. We put an ice pack on her head to mitigate the headache and ice packs on her toes to give her some relief from the hand/foot pain. She had no appetite and was able to get down some chicken bone broth she made last week with a couple of eggs dropped in. These we blended to make it more liquid. She was able to get a little food down later in the evening along with her infused seltzer. She finds it helps her a lot and is legal in Massachusetts.
She had restless night sleep (another side effect) and was up for about three hours during the night. She fell back to sleep and ended up sleeping late. She is pretty tired and back sleeping but she seems much better following this round of Folfiri infusion than the last. She was able to make her own breakfast and whipped up some fresh sugar solution for the hummingbird feeder. She has her pump connected and is really looking forward to having it disconnected tomorrow.
Intergrative Oncologist treatments with Vitamin C IV and hyperbaric 02 scheduled for Thursday. She struggles to get her shakes and supplements down following infusions. I went through all of the chemo support supplements and the oncology supplements that she is using to create an index of what each of the supplements contain. It is quite and exhaustive list. I have to go through her own herbals in order to complete the list.
That's about all for now.
Dan
0 -
Ups and downsDanNH said:Infusion 7
Yesterday was infusion 7. Her hand/foot syndrome has improved and her WBC was above the threshold so she was treated. It took multiple sticks to access the port but the third time was the charm. It was very stressful to see the port not working because on her first scheduled chemo the port failed and had to be fixed. This required a second surgery from which she did not recover fully for Chemo 1. It made that infusion all the more difficult. We were very relieved to see it working properly. The Lidocaine and Prilocaine cream that she was prescribed to numb the skin over the port really helped this round given the multiple sticks. She puts it on an hour prior to infusion and covers it with plastic wrap or an infusion needle dressing.
She got her Folfiri infusion and as he suggested, the Doc cut back her fluorouracil by 20%. As someone else posted on the forum, the second Folfiri was not as bad as the first. She had some tylenol for her headache (a side effect) and got a shot of atropine in her arm to ward off diarrhea.
She was pretty wrung out following her treatment. We put an ice pack on her head to mitigate the headache and ice packs on her toes to give her some relief from the hand/foot pain. She had no appetite and was able to get down some chicken bone broth she made last week with a couple of eggs dropped in. These we blended to make it more liquid. She was able to get a little food down later in the evening along with her infused seltzer. She finds it helps her a lot and is legal in Massachusetts.
She had restless night sleep (another side effect) and was up for about three hours during the night. She fell back to sleep and ended up sleeping late. She is pretty tired and back sleeping but she seems much better following this round of Folfiri infusion than the last. She was able to make her own breakfast and whipped up some fresh sugar solution for the hummingbird feeder. She has her pump connected and is really looking forward to having it disconnected tomorrow.
Intergrative Oncologist treatments with Vitamin C IV and hyperbaric 02 scheduled for Thursday. She struggles to get her shakes and supplements down following infusions. I went through all of the chemo support supplements and the oncology supplements that she is using to create an index of what each of the supplements contain. It is quite and exhaustive list. I have to go through her own herbals in order to complete the list.
That's about all for now.
Dan
Sounds like she is doing well, as well as can be well.
Ah, how I remember hating that 48 hour hookup, and couldn't wait for it to be disconnected. When my Onc told me that I was going to be hooked up 24/7 for six weeks, I lterally cried. How could I handle six weeks, if I hated 48 hours?
Works out that the 24/7 hook up was allot easier than the 48 hour. I think, knowing that there was NO disconnect, made it allot easier. Of coruse, I couldn't wiat for the six weeks to be over.
I hope she continues to gain strenght over her days off.
Tru
0 -
Thanks Tru. She is reallyTrubrit said:Ups and downs
Sounds like she is doing well, as well as can be well.
Ah, how I remember hating that 48 hour hookup, and couldn't wait for it to be disconnected. When my Onc told me that I was going to be hooked up 24/7 for six weeks, I lterally cried. How could I handle six weeks, if I hated 48 hours?
Works out that the 24/7 hook up was allot easier than the 48 hour. I think, knowing that there was NO disconnect, made it allot easier. Of coruse, I couldn't wiat for the six weeks to be over.
I hope she continues to gain strenght over her days off.
Tru
Thanks Tru. She is really trying to get through this. Today is disconnect day so that is uplifting.
Dan
0 -
Infusion 8
Infusion 8 was a carbon copy of 7 with a liter of saline added for good measure. On pump removal for infusion 7 she was dehydrated-dizzy, impaired mobility, weak... She got a liter of saline which really brought her around. Hand and foot syndrome continues to be as problem with her toes and balls of her feet. The soaks in aloe and epsoms salt solution helps along with creams. Ice packs also help with swelling in fingers and toes. I got her some eating utensils with big, soft, silicone coated handles which help with discomfort when eating. My son found them. They are made for people with arthritis.
Integrative treatments never fail to make her feel better. Every eeek I bring her to her treatments she ALWAYS leaves better than when she came. It's 50grams of vitamin C in IV followed by 45 minutes in the hyperbaric oxygen chamber at 4PSI breathing oxygen through a mask at 10 liters.
There is something to be said for regular oxygen supplementaction as well, even when her pulse ox is 98. It always clears her head and helps with overall feeling.
Energy healing this afternoon. That always makes her feel better too. I have no idea how it works, only that ther is something to it. I have tried it myself and experience almost instantaneou relaxation and feeling of calm and peace. Now a week to recover, an office visit with the oncologist and the cycle continues...Dan
0 -
oxygenDanNH said:Infusion 8
Infusion 8 was a carbon copy of 7 with a liter of saline added for good measure. On pump removal for infusion 7 she was dehydrated-dizzy, impaired mobility, weak... She got a liter of saline which really brought her around. Hand and foot syndrome continues to be as problem with her toes and balls of her feet. The soaks in aloe and epsoms salt solution helps along with creams. Ice packs also help with swelling in fingers and toes. I got her some eating utensils with big, soft, silicone coated handles which help with discomfort when eating. My son found them. They are made for people with arthritis.
Integrative treatments never fail to make her feel better. Every eeek I bring her to her treatments she ALWAYS leaves better than when she came. It's 50grams of vitamin C in IV followed by 45 minutes in the hyperbaric oxygen chamber at 4PSI breathing oxygen through a mask at 10 liters.
There is something to be said for regular oxygen supplementaction as well, even when her pulse ox is 98. It always clears her head and helps with overall feeling.
Energy healing this afternoon. That always makes her feel better too. I have no idea how it works, only that ther is something to it. I have tried it myself and experience almost instantaneou relaxation and feeling of calm and peace. Now a week to recover, an office visit with the oncologist and the cycle continues...Dan
My dad is to stubborn to try a hyperbaric chamber sadly but he has a oxygen machine for his copd would something like that help even ?
0 -
Hyperbaric forces more oxygenworriedson714 said:oxygen
My dad is to stubborn to try a hyperbaric chamber sadly but he has a oxygen machine for his copd would something like that help even ?
Hyperbaric forces more oxygen into the cells and system than supplemental oxygen is able to.
0 -
okayDanNH said:Hyperbaric forces more oxygen
Hyperbaric forces more oxygen into the cells and system than supplemental oxygen is able to.
I know I've just always wondered if supplemental oxygen also helps the kind that goes in the nose thought you might know
0 -
Neither Supplemental or HBOT Cure cancer**worriedson714 said:okay
I know I've just always wondered if supplemental oxygen also helps the kind that goes in the nose thought you might know
** I posted links about this earlier in this thread (though shows up below). On some things it may help - such as pre-radiation treatment and MAY BE some cancers in helping the chemo. There are many less than reputable HBOT clinics out there claiming it can cure or help "X, Y or Z" Many of these things have been debumked and others are more theory. Also certain patients with breathing issues need to be careful on supplemental oxygen because it can eventually make things worse. The occasional use for a few minutes probably not a big deal, but at this point we are told to keep patients off supplemental oxygen until SPO2 is below 92% (as a general rule.) Also regarding HBOT, it it something I absolutely love and wish it worked. I have run chambers and my wife does it for a living. If there was anything where it could help cancer outcomes in general, I would be in the tube every day. Bottom line is ask your doctors about all of this and not rely on this board or others. Including my post. It is just a guideline and thoughts on this.
0 -
Data seems to show that onNewHere said:Neither Supplemental or HBOT Cure cancer**
** I posted links about this earlier in this thread (though shows up below). On some things it may help - such as pre-radiation treatment and MAY BE some cancers in helping the chemo. There are many less than reputable HBOT clinics out there claiming it can cure or help "X, Y or Z" Many of these things have been debumked and others are more theory. Also certain patients with breathing issues need to be careful on supplemental oxygen because it can eventually make things worse. The occasional use for a few minutes probably not a big deal, but at this point we are told to keep patients off supplemental oxygen until SPO2 is below 92% (as a general rule.) Also regarding HBOT, it it something I absolutely love and wish it worked. I have run chambers and my wife does it for a living. If there was anything where it could help cancer outcomes in general, I would be in the tube every day. Bottom line is ask your doctors about all of this and not rely on this board or others. Including my post. It is just a guideline and thoughts on this.
Data seems to show that on its own hyperbaric oxygen is not a cancer killer. Data shows that it can be helpful to other treatments or in combination with Keto diet. In the end each must evaluate and choose For themselves. I can say that in my experienc my wife leaves treatments better than when she arrives... a lot better. Even if there is no cancer benefi her overall vitality improves a lot with the treatments. That is what I personally see. Those are our results.
0 -
YesDanNH said:Data seems to show that on
Data seems to show that on its own hyperbaric oxygen is not a cancer killer. Data shows that it can be helpful to other treatments or in combination with Keto diet. In the end each must evaluate and choose For themselves. I can say that in my experienc my wife leaves treatments better than when she arrives... a lot better. Even if there is no cancer benefi her overall vitality improves a lot with the treatments. That is what I personally see. Those are our results.
It is great that your wife feels energized from treatments. I mean that sincerely. But anecodoal evidence is not data. And some people can get led astray chasing things.
I am pushing 7 years into Stage IV cancer and have limited options. I do intermittent fasting and been trained to run a chamber. So I am not anti HBOT or Keto. I LOVE HBOT. I have many books on it. I just know there are many facilities that ignore safety issues (not just medical, I am talking facility). I also tried off-beat things in the last 7 years. To the extent I do mention some "off base" things (like TCM), I phrase it carefully and point out issues.
But (for example) there is one guy pushing the Keto/HBOT out of Florida said some things that said things that no one who is trained in these things should ever say - and repeated it multiple times. The first time it could be mispeaking/mistake. We all do that. I rewound it a few times to listen. It was extremely sloppy, because it results in death. I do not trust someone who makes a mistake on that level over and over during a presentation.
Again, it is great your wife is responding with feeling good by having HBOT. But many feel people can feel exactly the opposite. I think HBOT is awesome. I think it is a relatively low-risk treatment. I think the U.S. is way behind in using it (i.e. ticks me off) even with the on label uses that are approved, let alone with respect to things like using it BEFORE a radiation session to limit damage. I am just presenting a bit of a broader view.
EDIT TO ADD: Just one last to be clear (sometimes boards and emails things come across wrong). I think you are doing a k--k a-s job. Your wife is getting amazing support from you. I have seen things here through the years where people are on their own. It is incredibly sad to see. And, in my mind, we lost people too early due to lack of support in their real lives based on what they wrote here. You are a rock for your wife and your shirt says it all. So keep on doing what you are doing, it provides so much. #respect
0
Discussion Boards
- All Discussion Boards
- 6 CSN Information
- 6 Welcome to CSN
- 121.6K Cancer specific
- 2.8K Anal Cancer
- 446 Bladder Cancer
- 308 Bone Cancers
- 1.6K Brain Cancer
- 28.5K Breast Cancer
- 395 Childhood Cancers
- 27.9K Colorectal Cancer
- 4.6K Esophageal Cancer
- 1.2K Gynecological Cancers (other than ovarian and uterine)
- 13K Head and Neck Cancer
- 6.3K Kidney Cancer
- 671 Leukemia
- 791 Liver Cancer
- 4.1K Lung Cancer
- 5.1K Lymphoma (Hodgkin and Non-Hodgkin)
- 234 Multiple Myeloma
- 7.1K Ovarian Cancer
- 56 Pancreatic Cancer
- 487 Peritoneal Cancer
- 5.4K Prostate Cancer
- 1.2K Rare and Other Cancers
- 534 Sarcoma
- 719 Skin Cancer
- 646 Stomach Cancer
- 190 Testicular Cancer
- 1.5K Thyroid Cancer
- 5.9K Uterine/Endometrial Cancer
- 6.3K Lifestyle Discussion Boards