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Why A Good Doctor Is Important -MSK Giving Me Three Weeks Cycle

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

One of the things I consider myself very luck is that the staff - doctors, nurses, receptionists up and down the board, with one exception - have been absolutely great.  More so when I see some of the things people go through here.  Ditto for being lucky that I think I have avoided many of the major side issues.  I mean other than having cancer in my lymphs nodes, throughout my lungs and in my spine while looking at FOLFORI for the rest of my life. Laughing

Over the last few weeks I have been going slower when running, have had certain side affects and feel tired.  I was a bit more outgoing during the pre-treatment with my oncologist.  I talk more when I am tired.  She knows me well enough that she looked at me and said we can cancel the treatment for the day.  I said no, I have to keep going. I had a few moree questions as to the possibility that the chemo may kick in and reduce everything.  She said usually it is quicker than 6 months, but it can be that long.  And that it may even work on the tumors in the spine, despite some things on the internet.  Nothing like blowing smoke, just that it is possible.  She asked a few times during the conversation if I want to cancel the treatment.  I said no, then we headed to the door to head to the suites, but I mentioned one more thing which she recognized maybe I need to talk more.  

We sat down again and we discussed the three week option, she had mentioned it earlier.  I did not want to do it, because I want to keep my best odds up.  She readily admitted that studies are only on every two weeks, not three weeks, but she has patients doing three week cycles.  Her opinon (and my wife was there so I was going to be outnumbered) that I do alot on my good days and even my semi-good days.  My exercise and having built my cardio up has been a bif part of why I am really in good shape and she wanted to make sure I have more good days.  This chemo usually stops working at some point, and she wants me to enjoy life more.  The cancer is not causing issues.  The chemo is.

I finally capitulated - well I think my wife and oncologist decided Laughing  When I went to the bathroom before treatment she told my wife that though the data is limited, she would not recommend three weeks if it was putting me at risk.  She says because I am so active and moving, having good days FAR outweighs whatever the chemo will do.  We will cross the bridge at some time when this stops working to find the next thing to do.  The difference between two weeks and three weeks feels like I am on vacation.  And I can plan some of those now knowing I will have more good days.

Because of my doctor listening and caring, my life has just improved.  She wanted me to do it, not the other way around.

Bottom line is if you feel neglected or ignored during all of this, you have the absolute right to get answers and be treated with respect.  People may have bad days, but it needs to be left at the door each time there is patient contact.  Sometimes health care providers who deal with cancer are a bit guarded emotionally, it has to be tough to do, but a bit guarded or distant is completely different than rude and ignoring concerns.

 

 

Trubrit's picture
Trubrit
Posts: 4856
Joined: Jan 2013

It makes me happy to know you are happy with your medical team.  It makes the world of difference. 

I too have a great team, so know your joy. It makes a bad experience bareable. 

Tru

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I am on the bottle still as I type this, but looking forward to disconnect tomrrow then getting more normal days.  The first extension means my next treatment is after Memorial Day Weekend instead of the Monday before.  I have a wedding to go to on Memorial Day weekend and now will not just be a lump on a seat :)

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

Quality of life is so important, and I'm glad that your oncologist is bringing that into consideration in trying to find a happy medium of prolonging life with enough good days to make it worthwhile.  Dr. Paty is working with me from that perspective as well.  My feeling is that living is better than merely existing.

Sending you best wishes,

Alice

PS - I'm next down at MSK in early August.

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

I was handling two weeks and would have kept on trying.  But due to timing of personal things I did have a longer cycle and it was a big difference.

One day we will meet up on a MSK date Laughing

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

My tumors continue to shrink.   They may shrink faster on 2 week cycle, but I need the extra time to recover and enjoy life.   I had chemo last Monday and am still tired every day.  I usually have energy back after a couple of days, but it seems to be affecting me worse and for longer.  There's no way I could get chemo again next Monday.  I would barely have any time to do anything at all and then get knocked down again.  

There are some studies that show 3 week cycle is about as effective as 2 week cycle, but were done with stage 3 patients, not stage 4 patients.  If my tumors stop responding to folfiri, it will be on to the next meds.     My oncologist says Regorifib is next and if I can't tolerate that there is another that is almost as effective that is easier to tolerate.  I would take the more tolerable one first.  That is if I don't get on something from the Targeted Therapy Center at MD Anderson.

Enjoy your extra time off chemo! 

NewHere's picture
NewHere
Posts: 1108
Joined: Feb 2015

It was you I think who put the three week cycle out there and where I picked it up. I had bought it up before with my oncologist and even when I initially raised the change, she was fine with the idea.  But it reached to point where she said it is time for me to go to three weeks based on what I was saying.  

It is abslutely awesome that your tumors are still shrinking on three weeks.  If all of mine start shrinking, albeit maybe a bit slower than on a two week, I would be stoked beyond belief.  I am 14 sessions in and I think the tired may be getting worse, so extending it is a bonus.

Also thank you about the next things that could be up.  I would also go to the more tolerable one I think.

One again thank you for putting out the three week cycle concept originally.  I am not sure I would have put it out there originally if not for you. 

abita's picture
abita
Posts: 647
Joined: Dec 2017

I went 3 weeks at a time, not by choice, but because my white blood cell count was too low. The liver tumors shrunk. The lung ones showed up, but the liver lesions shrunk. Actually, I have had chemo for 2 months, and my WBC count is just over the low number for normal range. 

Joan M's picture
Joan M
Posts: 380
Joined: Oct 2016

I hope the 3 week cycle works as well for you as it has for me.  I have even had to skip weeks because of tiredness on the 3 week cycle.  I know the Avastin stays in our system for up to 6 weeks, so even though I don't get the Irontecan for 4 weeks,  the Avastin is still working to keep new tumors from forming and existing ones from growing.  

Like you, I am experiencing much more tiredness and weakness as I continue on the chemo. Had folfiri April 29 and am still really tired 10 days later.  Used to feel better within a couple of days. I felt really good when I didn''t have any for 5 weeks while I traveled to Houston and extended road trip to visit my new grandson.  

Praying that some new meds come on the market soon to help those of us with the MSS CRC.   

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

They hold our lives in their hands. Its SO important to feel like your trust is well placed. I love my onc and her nurse is fabulous. My onc has been on sabbatical for several months and the male onc that has taken over is wonderful, too. He actually calls me at home with results. We live almost an hour drive from the cancer centre so that's really appreciated.

Jan

Annabelle41415's picture
Annabelle41415
Posts: 6220
Joined: Feb 2009

You have to believe in your team and when anyone expresses concern they should always listen.  It seems a lot of them don't.  So glad that you are in good communication with your team and they are listening.  You are right, the good days outway the bad and that's the way it should be.  Sounds like you all are on the same page and that is a plus.  Good job keeping that cardio up Smile.

Kim

Kim

Butt's picture
Butt
Posts: 318
Joined: May 2018

I have a question here... If you want to become a patient in MSK do you need to go there on a regular basis and do your scans there? I have a local oncolgyst but went to MD Anderson as well. They need to see you every 3 months and have scans done there. This way you can be their patient. 

abrub's picture
abrub
Posts: 2097
Joined: Mar 2010

I go down to MSK for my scans because they have all of them, and I go down to see my dr anyway.  But when I was on chemo (Folfox+avastin) my MSK onc determined the chemo mix, and it was administered locally.  I could get my scans locally, but I prefer to get them there.  They rush the results, so I go down for 2-3 days.  CT scan and dr appt can be same day for me; MRI needs a full 24 hours for results, so I'll get that on a Tussday evening and see my dr on Thursday morning.  On the occasions that I'm getting both, I try to schedule going from one to the other, which gives me a free day in between.

They do their best to accommodate out of town patients.

Alice

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