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It Is Official: Stage IIIC and FOLFOX Starting Soon

NewHere's picture
NewHere
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Joined: Feb 2015

From what I was told last week, before report really reviewed, sounded like Satge III C and FOLFOX (like NED, another term I had not idea about a month ago).  Meeting with Oconologist next week to start the next part of this off. Infusion vs pills and all the rest.

I am a little over two weeks out from surgery, but seem to be doing well with things so it seems I may be starting sooner than I thought.   

Still not sure how I wound up here.  Less than 6 weeks ago I did not have cancer (well I did but just did not know about it :)) 

 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

I'm still sorry you have the Cancer, but Stage III is better than stage IV, so it's good. 

Now once you get going with treatments, you wil really feel like you are doing something about it. 

I'm happy to hear that you are healing well from your surgery. 

Sue - Trubrit

NewHere's picture
NewHere
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Joined: Feb 2015

As you and others here know, it is the waiting and bits and pieces which can drive you nuts.  I was pretty sure is was Stage III C before and knowing now is a plus.  I said the same thing, it could have been Stage IV.

I am still incredulous on how little discomfort, in light of what was done, that I had.   A couple of days of spasms (not full days) in the hospital that Ativan knocked right out.  At home, some spasms.  Think i took a total of two tylenol and one Ultram.  Really remarkable how this went (robotic surgery).  And the prep about walking from everyone here.  

Set an appointment with my surgeon for September, says he did not need to see me until chemo done.  He is thinking I probably am starting sooner rather then later.  Will know next week.

Easyflip's picture
Easyflip
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next step is to get a port. Right side won't interfere with a seatbelt (if you're in the US) I heard power ports were good. Not sure if that's a brand or a type. Good luck with Folfox! More later...

Easyflip/Richard

NewHere's picture
NewHere
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Joined: Feb 2015

Trying to figure out which way the seatbelts work and whether I will be passenger more than driver. :)  As a driver, it will go from top left to lower right.  Reversed as passenger.  

I am thinking I may not be really up for driving?  I have no idea.  LOL.  Will ask about power ports.  I do not even have an idea about those yet in terms of how they are inserted, proper care (showering) and the rest.  A whole new skill set for sure.

 

 

Trubrit's picture
Trubrit
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i didn't have any issues with wearing a seatbelt. Once the port is in and the incision healed, you don't really feel it (unless you plan on wearing your wife's bra). 

It didn't even bother me when I had the port accessed 24/7  

Sue - Trubrit

NewHere's picture
NewHere
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I will just find a mistress and wear her bra and not my wife's Laughing

The other part is also good to know about the port.  

Lovekitties's picture
Lovekitties
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When my sister got her port, she was given a small rectangular pillow to put between her and the seat belt at the port location.

She really didn't use it much.  But it was an option.

Marie who loves kitties

John212's picture
John212
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Your experience mirrors mine: I was scared sh**less until after the surgery and pathology report. Then, when I knew what I was facing, I calmed down. I found that it was only a few days out of each two-week treatment cycle (typical with FOLFOX) where I didn't have the energy to drive. Most of the time I just wanted to be in control of as much of my life as I could get my hands on. For me, getting the port inserted was similar to having a colonoscopy: it meant a light general anesthesia and I was in and out of the hospital in just a few hours. 

It will only get better from here.

NewHere's picture
NewHere
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Good, sounds minor to put it in.  Interesting about the energy.  I have been reading some of the things here where it sounds like reactions (including getting tired) seems to never fit a pattern among all patients nor for even one patient (i.e., nothing for first two treatments, third one causes problem, etc.) but it sounds like I may have been painting a more dire picture in my mind.  I was actually discussing this earlier - if I know that day x and y after the second day of the two day treatment is going be the tired days, well work around it.  Sounds like you had a good pattern develop along those lines?

My other concern is also the blood count issue and how I need to deal with that.  I will probably err on the side of caution, but I have a feeling that is going to be tough, such as not going to various meetings where I am member of various organizations or undertaking some things I do where there is a chance I could be exposed to people who have various illnesses, let alone going to ballgames as we discussed.

But it is really only 6 months, plus whatever time after for counts to get back to normal.  (I have not told some of these groups yet, though I am guessing being absent for 6 months, someone may notice Laughing)

Coppercent
Posts: 158
Joined: Jan 2012

You should always follow your doctor's advise but I think you will find it is not as bad as your mind is telling you it will be.  You should still be able to attend your meetings.  Most people that I went through treatment with worked full time.  I worked in a University around lots of students and did just fine.  My chemo buddy was an RN and kept working through out without any issues.  My doctor was not the over cautious type so he encourage work and keeping my regular normal schedule. Just take it one day at a time.  As for the port, mine is on the left side.  I drove to and from treatment and did not have any issues with the seat belt. Good luck. 

Fight for my love
Posts: 1530
Joined: Jun 2009

Good luck with your treatments, hope everything goes well.

NewHere's picture
NewHere
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They are scheduling me to have a port put in early next week (maybe by the end of this week if there is space), and chemo wil start within a week after that, if not sooner.  Met with the oncologist yeserday and he seemed really good in terms of both knowledge and bedise manner (just like my surgeon, been lucky with that).  Looks like it is only one day going to get IV and then two days on the pump - one trip every two weeks.  Disconnect the pump after two days.  Also seems the pumps they have do not require any batteries.  

So I am  pleased with two little plusses there.  You take the victories and bits of good news as you get them Laughing

John212's picture
John212
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Sounds like you'll be getting the gold standard of FOLFOX W/ 5FU. Everyone responds differently, of course, but I found that apart from neuropathy-related issues, I had almost no problem with this chemo regime that a long nap wouldn't fix. Good luck with the port insertion and the start of infusions.

NewHere's picture
NewHere
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It is processing ideas for work without have visual interference :)

They also told me that the OX component will only be used 9 times.  The first without it to see how I handle the other parts to help isolate the drugs and reactions and then only 9 times.  They said research has indicated that risks of neuropathy increases after 9, while the benefit difference between the 9 and 12 is negligible (if at all).  Obviously they will also be monitoring me carefully during all this.

I have no idea, but the oncologist seemed to be so on top of everything, studies, tests, trials, research.  Nothing was off limits on questions or answers.  He spent a good amount of time with my wife and I really going through it.  

These people are some serious hitters in this field, but their bedside manner and approach is just as impressive.  

I am beginning to feel like the dude from the Dos Equis commercials, "I do not normally have cancer, but when I do I choose Sloan."  Laughing  (Making sure the humor component stays high, taking your advice there as much as possible. Really does help, though sometimes the anxiety creeps in a tad.  Though if I had no anxiety from time to time I would be concemed.)

Trubrit's picture
Trubrit
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You've got a plan, you're heading in the right direction, you will find that things feel better, knowing that you're doing something. 

I wish you the best of luck and hope that you swim through this chemo regime just like John.  

I know you'll keep us posted. 

Sue - trubrit

NewHere's picture
NewHere
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Joined: Feb 2015

Got the plan and overall pretty much ready for it, though I know more periods of anxiety coming as each step about to happen.   The port placement, not too much.  But worrying about what is seen on the PET scan then when they actuallo hook me up to chemo the first time (and probably each time in the game of how will I feel roulette.  :) )  Nothing to to be keep on keeping on.  Already filled in the days for every two weeks and have the projected last date of mid-August.  ONe day, one treatment at a time.

Starnge writing this because I know everyone here before me has had the same path to walk already.  I figure by the last treatment it may hit me that I had cancer, part of me is still outside looking in on it.  Maybe just a coping mechnism.

 

Easyflip's picture
Easyflip
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where you are now almost exactly 2 years ago. Your doc sounds very good. I had 10 and 1/2 infusions of oxy. They cut it out for my 12th because of neuropathy and blood counts. Funny how they say you only need 9 but they still do 12 all the time, oh well. The idea of chemo freaked me out of course but the reality of it wasn't too bad for me. Emend worked great for nausea and I didn't lose my hair. I had cold sensitivity and weird taste sensations but nothing I couldn't handle. I didn't like sleeping with the stupid pump, it made noise and I got wrapped up in the tube. Chemo can cause insomnia and I was given Ativan for it. I remember being very tired.

You're early in the process and I can imagine it all feels very surreal. I too was busy with the nuts and bolts of treatment but I do remember one specific night, in the dead of night, when it 'hit' me that I actually had cancer. I started to feel panic but then something odd happened. A very warm reassuring 'something' washed over me and calmed me. I'm not super religious or extraordinarily brave and the 'something'  could have been my own mind but I'm very grateful for it because I haven't been afraid since. It's actually been a pretty peaceful and happy last two years for me despite my further cancer trials. I hope the same or something similar for you. That night I found out I'm not afraid of dying and that's taken the wind out of feelings of fear and anxiety. If it is divine I'm completely grateful and if it's some primal protective brain thing I did I'm grateful for that too. It would suck to be afraid all the time.

Keep being funny, it helps. I'm a funny guy too : ) And you'll get a lot of attention, enjoy it! Good luck!

NewHere's picture
NewHere
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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 Laughing) 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?  Laughing

abrub's picture
abrub
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Joined: Mar 2010

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's picture
NewHere
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Joined: Feb 2015

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 Laughing

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 guyLaughing  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 :) )

 

 

 

Trubrit's picture
Trubrit
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Joined: Jan 2013

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's picture
NewHere
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Might as well get the good stuff, has to be some upside in all of this Wink

deb0510
Posts: 1
Joined: Mar 2015

I had the exact same thing happen to me- the realization of having IIIC, happened during the night- and a warmth that I can't really describe came over me- a feeling of complete peacefullness & i also thot of it as "I'm going to be OK"- whatever that is!  I'm not a religious person- but am spiritual... since that time- I've been 'obsessed' isn't a good word- but I am enthralled with birds!! That feeling I got that night was like "wings" surrounding me... and well- birds/ angels have wings!! Innocent  I'm happy to see someoone else had the same experience!!!  I was diagnosed in September 2013- finished chemo on April 30th of last year (i had the full 12 infusions- well, 11 1/2 -as i had a reaction during the last 1/2- WEIRD!!).  So far- first CT scan came back clear as did first colonoscopy since....

My cell counts fluctuated through out- I looked at it as a week off of chemo! Handle each day with a positive thought process & you'll do great.  One thing that did happen (besides the neuropathy) was not being able to drink cold.... or touch cold.  Use a straw- that helps some & warm pretty much EVERYTHING up a bit... don't recommend warm gator-aide... yep tried it... PUKE!! That would usually happen the first 4-5 days after treatment.... 

Laughing

Trubrit's picture
Trubrit
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Chemo day went like a breeze for me. The nurses were absolutely fantastic. Busy, busy, but so friendly and caring. That really helped. I enjoyed talking with the other patients, as well. Some wanted to sleep or keep to themsleves, but others wanted to chat. That really helped pass the time, which for me was about four hours. 

I don't know if its a good thing or a bad thing to keep dates. I was terribly disappointed when my chemo was cancelled for low White and then platlettes. I hated that it put me back two more weeks at a time. Still, I think its human nature to want to see the end before the beginning. 

I remember being so excited when it was April, beause May was my projected finish date for the FOLFOX, and then I had three weeks off before my 24/7 5FU hook-up and Radiation. 

You have a good attitude and a good spirit, which will carry you through. I remember when Easyflip/Richard joined us here, and now he is looking back. Soon you will be looking back. Its good!

Sue - Trubrit

NewHere's picture
NewHere
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Joined: Feb 2015

I can see how the postponments will really stink when they occur, I am guessing that will happen at some point for me also, maybe even on purpose.  

We were suppossed to have a family trip during this.  I asked the Dr and Nurse about the possibility of getting infection, maybe missing treatments and the rest.  Their response, without hesitation, was "go.  Enjoy things.  It is most important to be as normal as possible.  If we need to postpone a session a week, no big deal."  Obviously if something is really off I am guessing that is off the table, but they are coming at it from a positive angle, but without trying to sugar coat it.  They were really clear about the stats when I asked.  The chance of recurrance, the chance of recurrance with chemo, my 5 year projections.  But in terms of the fight against these little demon cells and living life, they are real good.

I keep on trying to keep the spirit up.  I am sure there are going to be down times.  As the old saying goes, perpare for the worst and hope for the best.  Plus I have a whole bunch of new friends here that I can lean on a bit as this continues.  I was able to help fellow patients already to some degree, so paying it forward :)  

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Annabelle41415
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I've been missing from the boards lately and really haven't read all of your posts but wanted to welcome you to the boards if I've not done already.  I'm sorry you have to be here but you have found a great group of supportive people.  Good luck on your journey forward and hope to catch up with your story soon.  Please ask your concerns or questions here as someone can usually help in one way or another.  Once again welcome.

Kim

NewHere's picture
NewHere
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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.

 

 

 

Yolllmbs's picture
Yolllmbs
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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's picture
NewHere
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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.

 

Yolllmbs's picture
Yolllmbs
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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's picture
Trubrit
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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

NewHere's picture
NewHere
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That I can still do this during chemo, saw some stories here about RNs and others who could, which I guess bodes generally well regarding blood counts, etc.  There are times where I had to travel for business or other things (family emergencies) where a bit of time being off the schedule for a few weeks or more.  So I was able to be okay with the concept of being two months on the sidelines after surgery due to weight restrictions on what I can lift (10 lbs max, which is more than most patients ;) )  

Tacking 6 months on that is bumming me out more than any other aspect, though I am hoping that is not the case.  The oconologist indicated no issue unless something is really off.  I am hoping that reactions, if any, are limited to somewhat around the time of the treatment.  The anicipation of knowing even this.  It just never ends with this.  Foot in Mouth

Easyflip's picture
Easyflip
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concern I might have is the chemo knocks down your immune system. My white blood cell count went so far down my doses were altered. As an EMT your around sick people all the time so I worry about that. I'm sure you take infection precautions like masks gloves etc but any way to ramp that up a notch? I also got hammered on my platelets and had spontaneous nosebleeds that would not stop, could be an issue. My neuropathy also made small motor tasks difficult, like maybe for you starting an IV? Your doc has never had chemo so he doesn't really know. That's the benefit of our group. I say work and see how it goes but if you can't do it don't be a hero, you don't want to endanger your patients either. Good luck! Got your back!

Easyfilp/Richard

Trubrit's picture
Trubrit
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I am just about to start work again (March 17th. only once a week with a rural Doctor). So excited!  There is absolutely no way I could have drawn a shot while I was in treatment or for a good year after, as the neuropathy in my hands was so bad. 

I think its great that you are planning on working, but knowing that its really taking it one week at a time. 

Sue - Trubrit

NewHere's picture
NewHere
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Going with that for sure.  In the other thread you mentioned what you went through, and I have pinned that in my mind.  Trying to be prepared if I go that way (and again, appreciate the head's up.) If I can, I would love to get some hours in every other week.  If not, well then it is what it is.  

 

That is great news for yoo to be going back to work, really happy for you.  (Not sure I knew you did that with shots.  You mean like the needle type and not the Glock type that you were going to let me borrow is someone said something wrong?  Foot in Mouth)  I will lift a toast that day for you.  Not quite sure if I am allowed a drink yet or by then.  It is almost 4 weeks and that will be 5 weeks.  It may be a glass of Apple Juice toast.  But a toast nevertheless.

 

 

abrub's picture
abrub
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Just to let you know, not everyone's counts drop during chemo.  I never had to delay chemo or do anything for my blood counts.  (The neuropathy on the other hand...)  I kept hand sanitizer handy, and was never sick.  It's crazy to say that I was never healthier than when I was in treatment for cancer - no colds, nothing!

Alice

NewHere's picture
NewHere
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Thanks man Laughing  

I am going to watch things and make sure not to take risks.  My bloods are going to be drawn every two weeks, so hoepfully I will get advance notice when things go south (if they do) on the bloodwork.  I am not going to risk being in a position where I may get sick or worry about getting sick, and will not take any risk where I can pssoibly be in compromising my patient care.  None of it is worth it.  I may just be clinging on to a bit of hope of getting on a few hours every other week to help.  We will know soon enough :) (You know going back to some of our other conversations as I typed that little bit, I had the wave of "Uh..oh I got cancer and chemo coming up" which sort of wound up in my pit of the stomach.  It is now dissapearing.  But interesting how it just jumps in.)  Now back to our regularly scheduled thread.  

 

 The neroupathy will be a big one for movmeents.  I have been trained in IVs, IOs and other things, but it is outside the scope of practice where I am where I am an EMT-B.  Yeah, that means I do not have access to the drugs either.  At least the fun ones.  Foot in Mouth

 

Trubrit's picture
Trubrit
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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's picture
NewHere
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Joined: Feb 2015

Admitable in my guess makes more sense Cool

MAliceR's picture
MAliceR
Posts: 98
Joined: Mar 2015

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

 

 

 

 

abrub's picture
abrub
Posts: 2094
Joined: Mar 2010

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.

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

I am in next week to start chemo and will start to arrange those things.  Grabbed the pamphlets and information the first day befoe I even met the surgeon while waiting.

I like they offer that.

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

The neuropathy seems to be the big one from all of this as possible (likely) outcome.  So keeping an eye out for it.  Acupuncture is something that is on my list. Sloan is good in having intergative medicine and I am happy to give everything a shot to help.  I am going to push for it, though I think that if I want it, can just do it.  They have run some studies there showing the benefits for various cancer.

Going to also try to do some exercise from the get-go.  Right now it is limited (just four weeks out of surgery) and just had my port put into today.  The anesthetic has worn off and it is actually kind of sore and feeling it in my neck.  I thought for sure after the colon resection, that this would not even be noticed.  :)  I am guessing it will be calmed down a bit by the morning, but two more scars have been added to my collection.

Got the low down on the flushing every 4 to 6 weeks.  Cannot wait until I get to that point, chemo done and maintainance flushes until they take it out Cool

I will be keeping an eye on my counts and how I feel.  I am hoping to still be able to do the volunteer EMT thing at least every couple of weeks if I can, blood counts and feeling well of course being in play.  

I like the paper chain, very cool of your friend to do it.  I marked the chemo days on my calender and may do the X out or something to keep a visual track.  Thought the chain had to be fun (not sure if that is a proper word with all of this) but a nice guidepost and also knowing people with you.

I am hoping to have stretches of good days during each two week period where I can go out, enjoy a meal and the rest.  Right now as I recovered from surgery and moved off the low residue diet (Dts said whenever I was ready to do what I want).  Still generally trying to watch it, but adding back some bits of real food, such as a bit of fresh vegatables instead of canned at a meal, really does help me feel normal.  

Carpe Diem
Posts: 1
Joined: Mar 2015

Okay, so on Decemeber 6, 2014 I was sitting at work, minding my own business, and boom, I was transported to a new, frightening world.  I couldn't seem to get past intense nausea.  I thought it would pass, but nope.  I ended up in the ER December 7.  Ultra sound, CT scan, colonoscopy, colon resection.  What?  Cancer?  Me?  Crazy, right?  So here I am.  Stage 2 diagnosis, 3 rounds of FolFox down, 9 to go.  25% complete.  Fatigue like crazy, neuropthy, feeling icky.  But hey, I am not going to let this beat me. 

I look forward to meeting you all, learning from you, supporting you in health. 

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

May I suggest you open a brand new thread, that way we can all welcome you here without hijacking NH's thread 

You've found a great place, and it sounds like you are going to fit right in. There's nothing better than a bit of humour to make life a little better. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

So true. As I tell people, I still cannot believe this has happened and is continuing to happen.  Out of nowhere.  Resection and now port put in today.  Each step sort of splashes a bit of "yeah this is real" before it is back to "Huh?"  The times were the minutes before going into the main surgery.  And today sitting in the bed waiting to be bought into surgery for a port there was the few minutes of feeling bad/sad whatever.  And considering this is a somewhat minor nothing compared to rescetion and losing about 1/3 of my colon, took me aback a bit. Should have been nothing in my mind, but those couple of minutes hit me like "Ah &*(()) I probably really do have cancer and this is a fight."

 

Anyway, welcome to the boards, great people here and they have been amazing and have helped my a ton already.

Trubrit's picture
Trubrit
Posts: 4830
Joined: Jan 2013

It sounds as though it all went well. Be sure and take it easy for a few days. 

Sue - Trubrit

NewHere's picture
NewHere
Posts: 1087
Joined: Feb 2015

They did not put me fill out, but did not feel too much really.  Best part, I could still crack jokes, except when they asked me to be still or quiet.  Cool  I am pretty sure I came out with some of my best material ever, or it could have been the drugs.  I prefer to think it was just good (did hear some laughs)

Yeah, got home and guess the local was still there, so thought I could do some things.  Seemed to have worn off and it is kind of sore/hurts.  Sitting in front of computer to work, with the angle, was not happeniing.  Crashed on couch with laptop and it is not so bad.  For a bried instant I thought I would run out to do some errand, just some normal during the week before chemo. Taking it easy is a lot more my speed at this point :)

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