Chemo advice

worriedson714

SnapDragon2 said:

Is it from ostomy or the

Is it from ostomy or the urostomy?

Is it forming around the stoma or from the inside?

Is t like mucus, does it have any blood or puss?

ostomy

Its from the ostomy and it's coming from inside and it is white so I don't think blood or puss it could be mucus not sure but it's for sure white and coming from inside . 

SnapDragon2

You said he is constipated,

You said he is constipated, right?  If so, could be a blockage or one forming.  Call doc first thing in the morning.

worriedson714

new update

Chemo 2 has been delayed dad was just released from hospital due to massive blood clot in his leg from pelvis to knee and multiple blood clots in his lungs . Also another infection which was caused by kidney drain not being in deep enough hopefully that's fixed finally . I suggest anyone on folfiri speak to oncologist about blood thinners for prevention of blood clots during chemo . Studies show blood thinners on chemo improve survival I wish I did . Oncologist also very worried about my dad's mental state pushing hard for depression treatment however step mom and dad both resisting both seem to be losing hope . Anyone knew to chemo please don't forget about your mental health it's a big factor honestly it's not taken serious enough . 

Real Tar Heel

I developed clots in my lungs

I developed clots in my lungs on FOLFOX. NP said it was caused by the cancer, the Internet disagrees. I guess they don't mention this side effect of chemo because there are people who would be reluctant to take it. I was on thinners for the entire time I was on FOLFOX, but have not had any issues since.

The debilitating effects of chemo are going to be hard on anyone's mental state. I hate feeling sick Monday - Thursday, and "only" having to deal with frequent heartburn and fatigue until the next treatment is a welcome relief. I have my return to the track to look forward to at least, something I can enjoy and make me feel like I'm accomplishing something tangible (rather than work or other drugeries). That might be something you can find with your father, find him something to look forward to, something to keep going.

worriedson714

clots

NP told my dad today he is doing better but still wants to wait on chemo until the 18th which kind of sucks . Your right real tar heel I think that's why they don't tell people either but it's kind of bs . The risk of blood clots is very real and if we would have know we would have kept my dad on blood thinners it needs to be talked about by oncologists more . Good idea I will work on finding my dad something he enjoys he loves to travel maybe a vacation but I don't know how that would work with chemo . 

worriedson714

Avastin

Next week my dad is having avastin added to his chemotherapy and I have read some scary side effects on it . But would like some insight from those who have used it . Did it work good how bad were side effects things like that ? I know everyone is different but with my dad having blood clots already this drug scares me . 

worriedson714

Chemo 2 Avastin on hold

Dads chemo 2 on but Avastin on hold which is disappointing.  But onc is concerned about bleeding so hoping folfiri works for now.

 

Real Tar Heel

worriedson714 said:

Chemo 2 Avastin on hold

Dads chemo 2 on but Avastin on hold which is disappointing.  But onc is concerned about bleeding so hoping folfiri works for now.

 

I can't tease out the Avastin

I can't tease out the Avastin side effects from the rest. I will have an upcoming dental appointment and they will hold off the Avastin for a treatment so maybe I can tell you at that point.

myAZmountain

worriedson714 said:

Avastin

Next week my dad is having avastin added to his chemotherapy and I have read some scary side effects on it . But would like some insight from those who have used it . Did it work good how bad were side effects things like that ? I know everyone is different but with my dad having blood clots already this drug scares me . 

Avastin

Side effects I had with Avastin-- Concerning Elevated Blood pressure, so high at times (160/110)I had to take Procardia before I could get chemo, irregular heartbeats and arrythmias, my nose dripped mucous constantly and I developed a blood clot in my Axillary vein adjacent to Port. Avastin was pulled by the FDA for use in breast cancer in 2011. I would never take it again. Just my experience. 

worriedson714

myAZmountain said:

Avastin

Side effects I had with Avastin-- Concerning Elevated Blood pressure, so high at times (160/110)I had to take Procardia before I could get chemo, irregular heartbeats and arrythmias, my nose dripped mucous constantly and I developed a blood clot in my Axillary vein adjacent to Port. Avastin was pulled by the FDA for use in breast cancer in 2011. I would never take it again. Just my experience. 

thank you

Thank you for sharing this it is the kind of info I am looking for sounds like my dad may be lucky that they are holding it for now since he already has blood clots . Did the avastin at least shrink your cancer or at least keep it stable ? 

worriedson714

Update

Update - Dad had a bad night on the pump nausea so bad he couldn't sleep and just didn't feel good at all . The pills for nausea didn't work anyone know what other things to try for nausea ? At this point nausea is the worse side effect he is having along with the general just not feeling well . May put in call to oncologist about the nausea . 

DanNH

Pam gets an injection of anti

Pam gets an injection of anti nausea meds at infusion (Folfiri, Avastin, 5-FU). She had the melt in your mouth nausea tabs, uses sugar free mints and ginger tea, ginger tincture, and acupressure points. Acupressure gives relief quic and lasts about 20 minutes. 

myAZmountain

worriedson714 said:

thank you

Thank you for sharing this it is the kind of info I am looking for sounds like my dad may be lucky that they are holding it for now since he already has blood clots . Did the avastin at least shrink your cancer or at least keep it stable ? 

Hard to say

If Avastin helped, I had good results ofter first 3 infusions of Folfox/Avastin, with multiple small lung lesions disappearing, and the larger lesions shrank , I had 9 infusions total over 7 months, I had several breaks due to infected ports.....honestly I think it was having those breaks that allowed my own immunity to buid up and fight the cancer--subsequent scans remain nothing new and nothing grows, just continued shrinkage. So I have been in remission for almost 3 years. The Avastin caused so many side effects I would never consider taking it again. My oncologist said there has never been a study that showed it increased life span by more than one month. Dont know if thats true or not but I tend to think it is. Hoping your Dad does well, when I had the large blood clot of my upper extremity I was put on Eliquis, it worked really really well. Clot dissolved in short order. A cardiologist put me on that, the Interventional Radiologist wanted my to do Lovenox/Coumadin. 

Real Tar Heel

worriedson714 said:

thank you

Thank you for sharing this it is the kind of info I am looking for sounds like my dad may be lucky that they are holding it for now since he already has blood clots . Did the avastin at least shrink your cancer or at least keep it stable ? 

I had some early tumor

I had some early tumor shrinkage with Avastin and Irinotecan, about 20% or so. My CEA cut in half but not into normal range, has stabilized actually.

abita

worriedson714 said:

copd

Do you have copd or anything like that is that why the mucus as a side effect ? My dad has copd so he always has congestion and mucus never heard of this side effect thanks for this info . 

I don't have copd. And the

I don't have copd. And the side effect is common as a nurse is the one who explained it to me.

tanstaafl

NewHere said:

Talk To Your Oncologist

There are things that can negatively affect chemo.  For instance when I was on FOLFORI I also got a medical marijuana card.  I did not need to use it, but the intergrative medicine department told me not to use CBD, it would could make the side affects of the chemo worse.  THC was fine.

Also they recommended natural things instead of pills.  I would need to check what I took (been a few years), but instead of magnesium, they would recommend certain nuts.  I know I took pumkin seeds instead of some vitamin or supplement.

Be careful, there is a lot of bad information out there about these things. And bad websites.  Some of them are which of are popular.  For instance, Life Extension is quesitonable for a variety of reasons, including FDA violations:

https://quackwatch.org/cases/fdawarning/prod/fda-warning-letters-about-products-2017/lef/ has the letter which starts off with:

This is to advise you that the Food and Drug Administration (FDA) reviewed your website at the Internet address www.lifeextension.com in December 2016 and has determined that you take orders there for the Life Extension products.  The claims on your website establish that the products are drugs under Section 201(g)(1)(B) of the Federal Food, Drug, and Cosmetic Act (the Act) [21 United State Code (USC) 321(g)(1)(B)] because they are intended for use in the cure, mitigation, treatment, or prevention of disease. As explained further below, introducing or delivering these products for introduction into interstate commerce for such uses violates the Act. You can find the Act and FDA regulations through links on FDA’s home page at www.fda.gov.

Examples of some of the website claims that provide evidence that your products are intended for use as drugs include:

On the webpage titled, “HEALTH PROTOCOLS”, under the disease, “Breast Cancer” you include a link to a page with information about breast cancer and include, “Life Extensions Suggestions” which lists products and directions for use as part of the protocol. For example, as treatments for Breast Cancer, you suggest the following Life Extension products which are for sale on your website:

qw

Scientifically, Quackwatch is a pretty questionable site, created by a hyper adversarial guy with a defamatory streak, with a vexatious history of extortionate demands, a "law school" dropout whose legal training is from a defunct diploma mill that used to advertise on matchbooks and the back of comic books...

Yeah, I know QW has its "skeptic" fans but it is very partisan in nature. QW looks for bad sounding things without finding, or at least telling, the full story. So, when I want background information on individuals with only warts on it, QW is a juicy place for a quick read, or perhaps malign entertainment.  It's a pharma biased attack dog, like a supermarket tabloid of the medical world.   

What you could have learned there (and close associates) over the years, like many, might cost you your life.  Like us, maybe for Vitamin D or Vitamin C alone.

worriedson714

Update

Dad has had alot of loose stools today and alot of stomach problems causing him to not feel like eating and frequent orange and cloudy urine . I'm not sure if these are chemo side effects but if so they side effects clearly picking up . Also it could be another infection cause even water isn't helping the urine color . Trying to get him to go into the cancer center but of course he doesn't want to will continue to try won't ever give up on him . But for anyone new to this chemo for sure watch out for stomach problems seems to be one of the main side effects in my experience with my dad so far . 

Real Tar Heel

worriedson714 said:

Update

Dad has had alot of loose stools today and alot of stomach problems causing him to not feel like eating and frequent orange and cloudy urine . I'm not sure if these are chemo side effects but if so they side effects clearly picking up . Also it could be another infection cause even water isn't helping the urine color . Trying to get him to go into the cancer center but of course he doesn't want to will continue to try won't ever give up on him . But for anyone new to this chemo for sure watch out for stomach problems seems to be one of the main side effects in my experience with my dad so far . 

My onc has them pumping

My onc has them pumping several nausea medications along with the irinotecan, and recently added a steroid. I wonder if I am being over medicated? I am more about pain management than having to take a drug for every discomfort. So as for your father, there are many things they can think to give. It depends on whether he wants to have them.

worriedson714

Real Tar Heel said:

My onc has them pumping

My onc has them pumping several nausea medications along with the irinotecan, and recently added a steroid. I wonder if I am being over medicated? I am more about pain management than having to take a drug for every discomfort. So as for your father, there are many things they can think to give. It depends on whether he wants to have them.

same

he also gets steroid and nausea meds threw IV just don't seem to do much but it could also be a infection he has which is why they don't work .

worriedson714

worriedson714 said:

thank you

Thank you for sharing this it is the kind of info I am looking for sounds like my dad may be lucky that they are holding it for now since he already has blood clots . Did the avastin at least shrink your cancer or at least keep it stable ? 

Chemo 3

Bloodwork looks good mcv on the rise hoping it's a good sign . Hiccups bad need to find something that works for them overall things seem to be good .