It Is Official: Stage IIIC and FOLFOX Starting Soon

NewHere said:

Thanks

Each and every story here means so much and really appreciate all of it. I was real impressed with the Oncologist, just a real nice guy and cared.  Completely reassuring, even gave my wife a hug and said don't worry at one point where she got a little upset'/teary eyed when going through this.  He said under worse case if it does crop up again, based on my overall general health (except for this one little issue ) they can take care of.  Go in, take it out, whatever.  I also liked that he said 9 only and that is what he will do.  Will keep Emend in mind (I have such a strange shopping list developing) because some good anti-nausea will be good to have.  The tubing in the hopsital makes sleeping difficult for sure, so I am going to have that happening.  But the said whatever this pump is, no motor or batteries, just a ballon which does it.  Maybe I misunderstood, but the bit of geek in me is curious to see how it works.   In the hospital Ativan was my buddy a couple of days.  Had it about three times when spasms set in.  I am gathering and organzing to have things handy for the tired/down times.  TV, comfortable couch set up, blankets.  Looking for some good mediatation music since everyone seems to indicate that can help.  In me trying to create lemonades from lemons, sort of of forced down and try to relax time, which I normally would not do.

Your description is spot on.  I was trying to explain it, particulary when a friend asked earlier today.  Something "How do people do this, go through this, I do not know if I can."  Told them I have no idea, I am a bit outside looking in on it as this plays out in front of me.  I do need to try to come up with a better description for those who have not been down this path, I think the rest of us get it without description needed.  And yes, the times that hit when "I have cancer" is whoa, what is this.  If I think about it too much it will paralyze me.  Of course I have to, but when it hits I move on somehow, back to "it is what it is, need to get past it."  I am more afraid of the pain rather than dying.  Not that I ready to die, and perhaps the fear will be great if it starts getting close, but more now the possible pain and the rest.  And even then it passes.  The surgery already has passed into more of a hazy memory (did pretty quick).  And when the chemo is done, that will become a memory.

Hey, is there is fast forward button so this can be the end of August and I am done?  

Sloan is great - I was just there for my checkup

They do use a self-collapsing pump at Sloan, tho I didn't have that as I had my chemo (Folfox) close to home, where they do use electronic pumps.  I have friends who had that - big advantage is it is silent.  My pump went "bzzzt" every 2 minutes - I hated that sound! Sleeping with the pump/tubing; I relied on Ambien on chemo nights.

Interventional radiology, who put in the ports, are great.  I've met several of their drs for various procedures, including 2 port placements and removals, and they were all great.  I had mine done without sedation, just local (my choice; they wanted to do mild sedation, but for the final pump removal, I couldn't tolerate the IV, so I could only have local.  It was no big deal.  Ask your oncologist for Emla cream to gob on your port area before they access it for chemo; you won't feel the needle at all.  (It's rx.)

Who do you see at Sloan?  My surgeon is Dr. Paty.  I don't have a medical oncologist at this time, as mine left, and I've been in remission (NED) since completing chemo almost 7 years ago.

The timeframe is both forever and very quick!  You will be done before you know it, tho the days will seem to go slowly.

Wishing you the best,

Alice

NewHere said:

Yeah, I am A Sloan Fan Too

Ah, self collapsing pump.  Guess that is what it.  Silent is good and sounds (no pun intended) I caught a break there.  

Not sure which Dr. is putting in the port, nothing on the schedule yet.  I always lean to be given extra sedation, though maybe I could try the local.  I need to ask again about the cream, so other here mentioned it and I did not get a prescription yet.  They sort of indicated not really needed.  I will just start crying the second they approach me with the needle, that should do the trick 

Nice to hear that you do not have an oncologist - NED for 7 years.  Sweet and congrats.  My Surgeon is Dr. Garcia-Aguilar.  Cannot say enough good things about him.  All surgical margins are clean and just a flat out nice and caring guy  Even pre surgery I felt like I was in my wedding line.  So many people from the srugical team coming in to introdcuce themselves, do some hand holding, answer questions and all the rest.  

Yeah, time has sort of warped out with fast, slow and when things happened or are happening.  

Again, that is great on 7 years NED, tremendous.  And in 7 years I will post here with the same news about me (at your 14 year point )

 

 

 

Placement

I had my port removed with a local, but had Porpopol for the placement. I heard that placement is a little more involved, as they have to thread the catheter close to the heart, whereas removal is a matter of popping and pulling it out. 

You will do well, either way, but I'm betting they put you into la la land. 

Sue - Trubrit

NewHere said:

Thank You

I am not sure if we met yet, but thank you for the welcome.

As I tell people, the support from the people who have been down this road has been amazing.  And there is something "good" about that in terms of people in general which is one real positive from this health issue  (Not sure if I am expressing it correctly, but it seems that everyone who has had this, gets the ideas even without all the correct words.)

Everyone prepped me well for the surgery and I am getting some great prep for the chemo coming up.

 

 

 

I've been in your shoes

I had stage III b with 2 lymph nodes of 15 effected. I did 10/12 Folfox treatments starting 4 weeks after surgery. I was diagnosed and immediately did surgery. Chemo followed quickly. I had the port placed with local and propifal. The port was the greatest thing!  I'be got bad veins normally. The port made it so easy. I used the cream most of the time. it was easy, even when I forgot the cream. My advise with the port placement, wear a bra all the time until it heals. I am 5 1/2 months out of chemo. The only side effects left are neuropathy in my hands and feet. I've kept on the move (10 grandkids) will do that. I didn't really comprehend it was cancer until the doctor said NED. I had a very good cry at that moment. i kept a diary every day of my body's reaction. Each cycle I had a better understanding of what to expect. Tell your chemo team about your side effects. They work diligently to try to help you keep up your quality of life. Good luck on your journey!  The Csn family rocks!

 

Yolanda

NewHere said:

I Need The Cream

Everyone is saying this, I need to beg next appointment.  Might as well take advantage of it.  My veins are hit and miss.  If I work out more they can be easier to find, but if not working out, coupled with being dehydrated to any degree, I become a pin cushion.  So this started I have been drinking as much as possible the day before appointmetns, it seemes to help.  The neuorpathy is a concern, but hopefully 9 sessions with the culprit and careful monitoring may help me avoid that.  (I was quick to surgery also, within 2 weeks of pathology report on biopsy)

I cannot wait to hear that phrase NED.  (I had over half of 21 nodes affected.)  Fingers crossed that the PET scan does not have any suprises in it.  I am going to keep careful notes, may go with the good old fasion spiral binder actually.  Have apps and programs, but maybe pen to paper could be a good approach.  Thanks for the thoughts and the people here do indeed rock.

 

Spiral notebook

i used the old fashioned spiral notebook. It was cathartic and always ready. I'm happy I kept the notes. I could go back each cycle and  compare. it'll be done before you know it!

Trubrit said:

Admitable

I just read that you are an EMT, and would like to thank you for your service. Any work that includes giving help, comfort and saving lives is admirable, and no matter what level in the medical field you work at, I think you are equal in being worthy of appreciation. 

Sue - Trubrit

ADMIRABLE

Sorry for the mistake, the subject line in my last post was supposed to say admirable, and not admitable. Blame it on Chemo brain. HA!

NewHere said:

It is Okay

Admitable in my guess makes more sense 

Neuropathy and Working during treatment

Hi All, 

I am still new here, and learning my way around, but wanted to add a few thoughts to the conversation chain.

First off, my best wishes to all of you in chemo treatment and recovering from surgery. It can be overwhelming waiting for next steps and treatment. Don't forget to step away from it any time you can and find a reason to smile. 

So many of us end up with neuropathy from chemo. My first trip through, which took 8 months, I had severe neuropathy in my hands and feet/legs up to my knees. I was worried that I might not be able to walk by the time my treatment over. As soon as chemo was over my oncologist referred me to Acupuncture and I went once a week for 28 sessions. I have ended up with no lasting neuropathy in my hands and my feet are only numb at the ball and the very tips of my toes. All the rest of the feeling has come back. Push for Acupuncture if you can. It is also good for stress. I also discovered walking really helps. Even when in chemo, if you can walk a bit, it keeps the blood flowing and helps with the numbness. 

As for the port. It is worth havng and a real blessing. I did my first trip through chemo with arm IV's. Let me clue you, the pain in my arm was often worse then the chemo. When I went through my 2nd round of chemo my new oncologist (mine left my network) wouldn't even hear of chemo without a port. I have had no trouble with it. the placement was not a big deal. I was sore for a few days, but after major abdomonal surgery, a piece of cake. The Dr who placed it had me wear my bra and marked the edges so the straps or cups didn't hit the port. Since I finished chemo 7 months ago, I have even traveled with it. TSA seems to know what it is and doesn't even blink. I didn't find that to be the case entering France, they really gave me a once over, but I took paperwork from my Dr and that seemed to do the trick. Having it flushed every 4 weeks is a pain when you are finished with treatment. My oncologist says if my next CT scan comes out clear she wants it removed. I have no experience with the removal to share, I am hoping I will be able to report on that in a few weeks if my tests are clear.

Lastly, As for working and blood counts. During my first round with chemo, I worked. My office was in a teen health clinic. I was around sick kids every day. I never caught a cold or anything they brought to the clinic. I was careful, washed my hands and kept an air purifier in my office.  I was retired when I went into my 2nd bought of chemo. But I continued to be out and about, having lunch with friends, going to public places as soon as I got over the treatment Kermit Days. Again I was really careful but I found getting out helped my mental state. 

The day I started chemo, my dearest friend brought me a paper chain she made. There was a link for every day from the start of chemo to the end. Each morning I got up and tore off a link. I could watch my progress and cheer myself on as the chain got shorter and shorter. It was a wonderful way to focus on the end of treatment. It also quietly reminded me she was with me every step of the way. 

Blessings everyone,

Mary

 

 

 

 

MAliceR said:

Neuropathy and Working during treatment

Hi All, 

I am still new here, and learning my way around, but wanted to add a few thoughts to the conversation chain.

First off, my best wishes to all of you in chemo treatment and recovering from surgery. It can be overwhelming waiting for next steps and treatment. Don't forget to step away from it any time you can and find a reason to smile. 

So many of us end up with neuropathy from chemo. My first trip through, which took 8 months, I had severe neuropathy in my hands and feet/legs up to my knees. I was worried that I might not be able to walk by the time my treatment over. As soon as chemo was over my oncologist referred me to Acupuncture and I went once a week for 28 sessions. I have ended up with no lasting neuropathy in my hands and my feet are only numb at the ball and the very tips of my toes. All the rest of the feeling has come back. Push for Acupuncture if you can. It is also good for stress. I also discovered walking really helps. Even when in chemo, if you can walk a bit, it keeps the blood flowing and helps with the numbness. 

As for the port. It is worth havng and a real blessing. I did my first trip through chemo with arm IV's. Let me clue you, the pain in my arm was often worse then the chemo. When I went through my 2nd round of chemo my new oncologist (mine left my network) wouldn't even hear of chemo without a port. I have had no trouble with it. the placement was not a big deal. I was sore for a few days, but after major abdomonal surgery, a piece of cake. The Dr who placed it had me wear my bra and marked the edges so the straps or cups didn't hit the port. Since I finished chemo 7 months ago, I have even traveled with it. TSA seems to know what it is and doesn't even blink. I didn't find that to be the case entering France, they really gave me a once over, but I took paperwork from my Dr and that seemed to do the trick. Having it flushed every 4 weeks is a pain when you are finished with treatment. My oncologist says if my next CT scan comes out clear she wants it removed. I have no experience with the removal to share, I am hoping I will be able to report on that in a few weeks if my tests are clear.

Lastly, As for working and blood counts. During my first round with chemo, I worked. My office was in a teen health clinic. I was around sick kids every day. I never caught a cold or anything they brought to the clinic. I was careful, washed my hands and kept an air purifier in my office.  I was retired when I went into my 2nd bought of chemo. But I continued to be out and about, having lunch with friends, going to public places as soon as I got over the treatment Kermit Days. Again I was really careful but I found getting out helped my mental state. 

The day I started chemo, my dearest friend brought me a paper chain she made. There was a link for every day from the start of chemo to the end. Each morning I got up and tore off a link. I could watch my progress and cheer myself on as the chain got shorter and shorter. It was a wonderful way to focus on the end of treatment. It also quietly reminded me she was with me every step of the way. 

Blessings everyone,

Mary

 

 

 

 

Sloan Kettering and Acupuncture

Sloan has an Integrative Medicine group that includes Acupuncture.  It might be worth checking in with Integrative Med to find out what you can do about side effects; neuropathy, etc.  They can recommend supplements that are safe with chemo, as they are cancer specialists.