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What would you do ?

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

Hello all ,

        So my dad has had 5 cycles of folfiri and side effects of chemo seem to be getting worse pain , fatigue , loose stools you name it . He had his 3 month scan last week so we are all nervous to find out what the results are . I asked the oncologist last time we saw him if the scan still shows my dad's cancer growing will treatment change ? He said no he doesn't expect it to show much in the way of shrinking or even being stable . 

           So we may be at something of a crossroads that I am saw everyone here has gone threw if the scan shows the cancer still growing . Does it make sense to keep pumping the same chemo we are doing now ? We are very worried about the harm the chemo could be doing and if there is no positive results I am just not sure its the right move . Has there been cases were the chemo takes longer then 5 cycles to get results ? 

          Also my dad's oncologist will not let my dad use any supplements during treatment for fear of negative affect on chemo . So I feel like we are only using half of our toolbox so I threw alot of questions out there I guess I am asking one main one . If treatment didn't work in 5 cycles would you keep doing the same treatment or explore other treatment options ? 

myAZmountain
Posts: 421
Joined: Apr 2018

Lying in bed for days at a time while going through FolFox chemo with absolutely no energy, lethargic and feeling aches, pains ,heart palpitations, numb fingers and feet.....then just starting to feel a little bit better with some renewed enrgy and spirit the next week as the new infusion date loomed closer...well it made me decide I would rather feel good and enjoy what time was left than to endure more chemo. So I stopped after 9 infusions and have not looked back--at some point the quality of life for what time you have left is more valuable than prolonged chemo making you unable to function and totally out of it. I truly believe they use too much chemo too often. But thats just my experience. I also did not ask the oncologist if I was "allowed" to take supplements, I just took them. Hope your Dad's scan  results are positive!

SnapDragon2's picture
SnapDragon2
Posts: 586
Joined: Nov 2019

I don't care what onc's and nurses tell you about chemo.  If MCV is not in good range then chemo is not working.  Onc's have no say so in your decision to take supplements to help you through it.  It is barbaric to say the least to only do the chemo and not help yourself with QofL.

After round 4 folfox I started questioning bloodwork and how I felt.  I was ignored and their "trained" repeated response was "We will only know after you complete all the rounds."  Not true!!!!  After round 7 I said no more and demanded a scan.  Wasn't leaving until all my demands were met.  Then I got the H*** out of there before they killed me by chemo poisoning.

 

Tueffel's picture
Tueffel
Posts: 312
Joined: Feb 2020

I saw the blood work for my dad. MCav was always normal range despite the chemotherapy not working at all.... So yeah now I am skeptic about these things..

SnapDragon2's picture
SnapDragon2
Posts: 586
Joined: Nov 2019

Yep, MCV above 100 is where it should be to let you know chemo is working optimal.  Low MCV and high cea is bad.  Then throw in scans lit up.  

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

   We got the scan results and as heartbreaking as it is to say the cancer is still growing " mildly " basically the same as the cancer was growing before . The question has become does that mean chemo isn't working ? Dad's MCV is going back down after going up so sounds like that is a bad sign the only thing different in this ct scan . Is there is no mention of soft tissue changes in the pelvis that they that was cancer that was spearding but does that mean it's gone ? Or did this doctor who reviewed this ct simply not see it there or not mention it ? 

      Also I agree my dad's oncologist has no right to tell my dad he can't take supplements i think we are just going to start doing it without telling him it's really the only option cause i truely feel they make a difference . 

myAZmountain
Posts: 421
Joined: Apr 2018

Did you get a copy of CT results read  by the Radiologist or just the Oncologist interpretation of the read? Did they include the pelvis in the Ct scan? I have learned to "never assume".  The best advice I heard was from the lung surgeon who said that its your own immune system that fights cancer, that everyone has cancer cells in their bodies and usually our immune system squelches them before they can cause harm.....so why do they wipe out our immune systems with unrelenting chemo?

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

The got the radilogist report on his mychart and the pelvis is in the ct but it's a much shorter section this time just tells how much the cancer has grown no mention of cancer in the soft tissue in the pelvis at all which is different from last scan 3 months ago . Never thought of it like that honestly but it does make me wonder now that you mentioned it why indeed . 

All and all not the report I wanted to see feels like this means the chemotherapy isn't working but who knows what oncologist will say weds

SnapDragon2's picture
SnapDragon2
Posts: 586
Joined: Nov 2019

EXACTLY!!!  Very well put AZ.

Real Tar Heel
Posts: 265
Joined: Nov 2019

Chemo has been working for me. Adjuvant worked for some time, had recurrence months later. Current chemo is shrinking tumors.There are others who have had mixed results as well. But it is rare for it to cause a complete regression/NED result.

It is my understanding that the scan results lag. Chemo gets inside the tumors and is working but it doesn't show immediately if it is working. It may take 6 months of treatment for you to see something. There are others who will differ, and well of course our bodies all respond differently. It is not clear that any of the presently observed chemo markers are reliable across a range of individuals. The scans may tell you more.

For me, one of the best things I've done was to ask them to reduce the nausea/pain meds they give intravenously. That might seem counter intuitive but your body can handle a certain amount of discomfort. Your body can't handle being numbed into nothingness. They all think we are dying, that's what their training is telling them. So they say, what the hell, if they are experiencing pain, give them something for it. Well, if you ask me if I'm nauseous, and I say yes, I'm only answering the question with the truth, it doesn't mean I want a tonne of meds for nausea.

I think your father might be better able to handle things if he is in better control of himself, and reducing meds might help with that. That all depends on what he is going through, his tolerance level and any other issues he might be experiencing outside of treatment.

There was an instance with a football (soccer) match with me having a dispute with the referee, someone trained in that field about the rules of the game. As it turns out, I was right that one time. Generally, however, that trained referee will usually know more than me about the rules of the game. Have to be careful arguing with the ref or we get carded...

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

I am sure some of yall been in this situation did they cancel the chemo cause of the growth ? I am hoping realtarheel is right maybe it just hasn't been long enough .

Steelkiwi686's picture
Steelkiwi686
Posts: 73
Joined: May 2019

In my experience I was to be on chemo for life. I accepted that as fact. After a year and 26 chemo sessions I was declared NED.
I'm glad I kept up with the treatments. I trusted my oncologist. I think sometimes it just takes time to work. 
Interestingly, I had every side effect under the sun and by the time NED came I was physically a wreck. 

My dr felt that I was very sensitive to the chemo which resulted in all the side effects but on the other hand I was also apparently sensitive to the benefits of the chemo as well. 
We all know every situation is different but in my case I'm glad I didn't give up on the chemo and gave it time to work. My thought at the time was that as long as the dr was moving forward with the treatments I was happy to have them. what I feared most was the dr saying no more.

What originally started as a two month chemo break has now stretched to over two years NED.

Im stage IV and I had Folfox 5FU with oxy and Avastin and Neulasta. 
For the record I didn't personally use supplements but found medical marijuana to be a godsend. 
I'm pulling for your dad to see positive results soon. 

 

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

Thank you for sharing this it's the kind of story I hope for my dad like you my worse fear is we see the oncologist tomorrow and he stops treatment all cause of one scan . 

Annabelle41415's picture
Annabelle41415
Posts: 6734
Joined: Feb 2009

Cummulative side effects are very common.  The more treatment, the longer the effects stay and even others could pop up.  Sometimes if there is growth they switch out the drug.  It might be something you all need to talk to his doctor about.  As far the supplements, they can sometimes reduce the effectiveness of the drug so it is good that you let the doctor know exactly what he is taking.  I'm wishing your dad well.

Kim

SnapDragon2's picture
SnapDragon2
Posts: 586
Joined: Nov 2019

Another very important thing is pH.  Keep a check on it.  An alkyline body is important during treatment and well just for overall health

.

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

Ph isn't even in his blood and whats a alkyline body ? 

SnapDragon2's picture
SnapDragon2
Posts: 586
Joined: Nov 2019

pH strips from drug store for checking urine first thing in the morning.  If acidic, drink lemon juice, take baking soda or similiar to raise it to normal level.

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

PH level in august was 6.0 I will talk to my dad about drinking baking soda and lemon juice . 

worriedson714's picture
worriedson714
Posts: 331
Joined: Dec 2019

Need some input on this this scan which they say was compared to the one four months ago is very weird the more i get into it . The scan four months ago clearly tells of a blockage at the ureathra this scan no mention of it not saying its gone or there . Scan four months ago also mentions soft tissue changes all threwout pelvis most likely metasatic cancer . This scan no mention of it not saying its gone or there then they compared the size and this shocked me . 

Now there saying the tumor is 17.1 by 10.8 by 6.6 cm there also comparing that to the scan four months ago saying four months ago it was 15.9 by 10.3 by 5.8 . But when I go back and look at this scan from four months ago it says the tumor is 6.8 by 5.3 cm wtf anyone else think thats weird ? I feel like I am losing it these scans determine if my dad is on chemo or not and to be something seems off right ? 

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