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How many people don't finish their chemo regimen?

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

I'm back to seriously considering stopping the chemo early. I've done four of eight and will do the fifth on Monday. I'm seriously thinking about just doing six. I want to give this my best shot but I'm so sick and miserable I just can't imagine still being this sick at the end of January.

Have all of you finished your chemo regimens or has anyone stopped early?

janderson1964
Posts: 2215
Joined: Oct 2011

In 2006 i did 12 treatments of FOLFOX and never considered stopping early. In 2007 after my first recurrence i stopped after 10 rounds out os 12 rounds of FOLFIRIR. In 2012 after my second recurrence i considered stopping after 10 rounds of FOLFIRI BUT ENDED UP DOING all 12. So far I have done 15 rounds of vrious combinations in 2014 after my third recurrence. I am considering going to Xeloda and Celebrex only if my scan next week shows now negative changes and the ablation goes well next week.

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

I managed to make it through FOLFOX and 5FU for nine treatments, but when I did the six weeks continuous 5FU, my neuropathy got so bad that my Doctor quit it at five weeks. 

I wanted to stop the last six days of radiatoin, but my Rad Onc would not let me. 

It is a hard decision and one not to be taken lightly. It could mean the difference between life and death.  Did my I get my liver met because I didn't do six full weeks of 5FU? I will never know of course, but it does flit through my mind every now and again. 

Good luck making your decision. 

Sue - Trubrit

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

Thank you. I want to give it my best shot at getting rid of the cancer cells but I'm just completely miserable. I'm angry because this has taken so long and now Christmas will be ruined because of it. I've lost a year of my life so far. I'm sick of the cold sensitivity and blood clots that hurt and constant nausea and my mouth feeling like it has a layer of oil that tastes like crap in it all the time and dehydration and fatigue. I wouldn't mind just having the flouro whatever it's called but the oxypalatin is the worst. I suppose it's what's doing the most good. Or bad if you consider how poisonous it is.

Is the cold sensitivity called neuropathy or is that something else?

Jan

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

Neuropathy is when you lose all or partial feeling in your hands and feet due to nerve damage; which, in our case is caused by the chemo. 

Being sensitive to cold is called cold hypersensitivity. 

I am so sorry that you are having such a terrible time. I hated the Oxi too, but radiation was by far worse for me by leaps and bounds. 

Do have a serious talk about all of your concerns with your Oncologist; something must be done to help you. 

Sue - Trubrit

Annabelle41415's picture
Annabelle41415
Posts: 6247
Joined: Feb 2009

Have you discussed this with your doctor and asked them if they could reduce the amount you get at treatment.  Sometimes this can help immensley.  Also, there are other meds they can give you if you feel sick.  I'm sorry that it's so hard on you.  Feeling like that during treatment only makes things seem worse.  Please talk to your doctor.

Kim

Yolllmbs's picture
Yolllmbs
Posts: 361
Joined: May 2014

     I know it's different for everybody. I started chemotherapy Fcu5 four weeks after surgery.  My oncologist made us take a class which informed us of all the possible side effects. I went into chemotherapy feeling informed. I joined this group and found out I really didn't know the information from the patients side. I asked lots of questions and I think it made the sick feeling more tolerable. I did 10 of the 12 treatments. We decided to stop the treatment because of the neuropathy. I was prepared for the cold sensation. That was part of the introduction to oxy. The neuropathy is pain and tingling hands and feet constantly. I'm still feeling those effects 10 weeks after I stopped. My doctor and I made the decision together because of the concern regarding the quality of life. I didn't feel the best when I was doing treatment but I kept pushing forward until it felt impossible. I think you need to discuss your health with your oncologist and make decisions accordingly. I do also worry if I should have finished the remaining 2 cycles. Only time will tell. 

 

Yolanda

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

I can't help with when to stop treatment.  I've been on chemo for almost five years.  I've done Oxi three times in regimes.  On the Oxi now getting it every week, next week is my 23rd week of the Oxi, with one week off every four weeks, along with two other chemo's.  Mind you I have had time off to get surgeries from chemo, other then that, no.

Dear Christopher who has passed away did 7 years of chemo. Do I get tired? Yes.  Do I feel miserable at times? Yes.  Do I like living more then death? Oh to be sure the answer is yes.  So I do my chemo.

bdttcgtttttttt tt tof dbrbh. Kim,ook

The above sentence was written by my chihuahua Nubs, not sure what he is saying.

Any rate my suggestion is same as others talk to your oncologist and see what can be done.  I wouldn't just quit without that talk, ok?

Hugs,

Winter Marie

ron50's picture
ron50
Posts: 1721
Joined: Nov 2001

 In the back of alternating hands every week for 48 weeks.Every second week it was enhanced with 9 tablets ,three a day for three days after 5fu, of a drug called levamisole. It was a weight related dose. Too much levamisole killed you, too little did nothing ,just right , well I am still alive sixteen years later. My Oncologist was worried towards the end that chemo was having a bad physical and psychological effect on me and suggested we stop. I just said if it comes back I will always wonder so lets just do it. We did. Ron.

lilacbrroller's picture
lilacbrroller
Posts: 412
Joined: Jun 2012

Hi, Jan. I can't remember whether you are a stage III or IV.   If you're a III, the chemo could save your life. If you're a IV, especialy an advanced IV, well.. it's going to buy you time but that's about all, unless you're one of the few and very fortunate.

This board is a great cheering section.  If you're a III and just need encouragement through some tough times, I'm sure several of us will step up and say "Go, Jan!" every week if that would help you stay on it.  Many people, especially IIIs, post a countdown of their treatments after each one, and when the rest of us are able, we cheer and offer encouragement.  

If you're truly miserable and just can't continue, I suggest you talk to your onc about a break, or even switching chemo.  The are about, what, five, six, possible MCRC drugs we can have, and several cocktails. I think I've taken most of them and not all have awful side effects. They're not great but everybody responds differently, and maybe you can find one that works well for you and doesn't affect you much, or causes side effects you can deal with.   

I did the full 12 of Folfox and then the onc stopped it.  Another doc I saw asked why he didn't continue, since it really really worked, and I didn't ask or know.  I had the cold sensitivity (luckily I had started in the summer so ended o/a January) and didn't get the neuropathy until my last treatment which made me unable to put on earrings and do fine motor work. Nearly two years out, I'm fine. No residual oxy damage, full functionality restored in my hands.  But no way do I have Winter Marie's tolerance for the stuff!  What an oxy superhero! I'm picturing her strapped to a chair, ala Game of Thrones, being infused by poison, and then screaming and writhing, sweating, turning all colors, clenching her fists, and then returning to normal, tossing her head back and saying to a crowd of onlookers - "it was nothing, just a flesh wound - hit me again." Not me, man.  Other chemos were stopped by the onc when they didn't work (CEA went up, scans showed progression ;-(, but then, I'm a IV.)

Good luck - (go Jan, go Jan, go, go, go, go Jan...)

 

Karin

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

Thank you everyone for the support.

Winter Marie, my oncologist is about as helpful as Nubs would be. I should have switched before this second round. Karin, thank you for the encouragement. I'm a stage three. I don't want to take a break because I need to get better and get back to work. The cold sensitivity is really bad now because it's so cold here. Today was -24 C with a wind chill of -39 C. That's -11 F and -38 F. It affects so many things. Last week I had to use a glove to talk on my cell phone and make sure it didn't touch my face. I can't take silverware out of the drawer without gloves. It's ridiculous. We keep our house warm but the coldness gets into everything. I have to use gloves to feed the dogs because their dishes are metal. I'm only getting a few days before the next chemo where I can drink something cold but not too cold. Another two months of this is going to drive me nuts.

I didn't see my oncologist yesterday because I can no longer drive myself there due to the cold sensitivity as it's hard to find a spot and they're always far from the door and I can't get into a cold car. My friend was supposed to take me but they had a gas leak avacuation in the middle of the night and she still wasn't able to go home and they had three dogs with them at the hotel.

Jan

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hey Jan, Hang in there!!!! It's really hard but you can do it.  Everyone goes through this phase but just keep pushing your way through and look at it as you didn't lose a year of your life, you've gained 20 more.  That's truly how I look it at it now.  I don't know how I got through it.  Wear gloves everywhere, it helps with the neuropathy.  Also they have these little hot packets that you can crack and they will warm your hands and feet when outside.  They're very inexpensive.  I wore my lined boots and kept on my gloves almost all the time.  Sleep as much as you can to get through the bad feeling. You're almost at the end.  I skipped a few days of xeloda at some point because the nausea was just too much but that was it, try to finish the oxilaplatin.  Also you should use the disability spots at your doctors if you can, it's a valid disability.  You're almost done with the hard part, there is an ending in sight!!!!!!!!!  You can make it.  

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Boxing GlovesSee Karin, no turning colors, just clenched fist in boxing gloves.  My daughter sent that to me, with the words Keep up the Fight Mom.

AND IT's hard it isn't easy and Jan you seem to have gotten the worst of everything.  Keep trying dear, it will hopefully get much better.

Winter Marie

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Try to hang in there, you've come so far. What's your CEA? I did 12 rounds of Folfox but had 1.5 month break in between for surgery. I was still NED for over 3 years. stage 4. 

UncleBuddy
Posts: 1019
Joined: Aug 2013

My brother is stage 4, started as stage 2a. He had to stop a few times because of hospitalizations and also because his heart was too weak for the 5-fu. He is only on irintoecan right now. He's on a low dose and his onc will raise the dose if he does well on it. Make sure your heart function is monitored. My brother's heart was affected by the chemo he had in 2000 for non hodgkins lymphoma, as well as from 5-fu and a couple of other chemo meds he was on. He's had a rough time. Right now they are treating him to try to slow down the growth of cancer, so they're trying to extend his life. Good luck. I can't say what I'd do because I'm not in your position, but I hope you're able to figure things out.

Lin

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

I have no idea what my CEA is because my onc hasn't asked for it. They say I'm healthy other than fighting cancer. Tomorrow is chemo day so I've been upset and stressed for the last few days. I hate, hate, hate it.

herdizziness's picture
herdizziness
Posts: 3642
Joined: Apr 2010

Tell your Onc you want a CEA count, there is no reason for him not to order it at your request.

Winter Marie

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

My Oncologist did not order CEA until after I had finished chemo, as he said that the chemo itself messes with the results. So maybe your Oncologist is waiting. Did you have your CEA checked before starting treatment? That way you may have an idea what your number was while the tumour was active or post surgery. 

Sue - Trubrit

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

CEA is a normal part of your bloodwork.  Ask for a copy of your bloodwork and you'll be able to see it on there.

abrub's picture
abrub
Posts: 2098
Joined: Mar 2010

However, they stated up front that they would never know if the chemo was beneficial to me.  The known problems far outweighed the questionable benefits in my case (and my neuropathy, while now mild, is permanent, and 6 years post-chemo is getting worse.)

It's a very personal decision.  In some parts of the world, 6 or 8 cycles of Folfox is considered the norm, not 12.  Discuss with your dr and then decide.  Quality of life cannot be overstated.

Alice

thxmiker's picture
thxmiker
Posts: 1282
Joined: Oct 2010

There is little clinical evidence that 6 tretments or 12 treatments is better.   If you are responding to the treatments then they are working!  Do what your body tells you is right.  I was scheduled for 12 treatments and have done 14, but am finally seeing great results.

 

 

 

Best ALways,  mike

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

Thanks again everyone. This is the best place to talk about this, you're all wonderful.

How do you know if you're seeing good results? I was almost back to normal before I started this round of chemo, I just got tired easily. Now I can barely function and feel like crap. Can I only get an answer by asking for my CEA?

My understanding is that my onc will have put my information into a computer program and it tells her what it thinks the ideal number of treatments is. Of course, I had to start a month later than they wanted after my surgery because my incision opened up. Before I started I asked her if that would make a difference and she was very casual about it and said she 'still thinks it's worth doing'. So I really have no faith in if it's doing anything for me. Did I miss my window of opportunity because it was so long before the chemo? Am I totally wasting my time doing this?

I go for chemo number five today and I've been upset and stressed all weekend. I hardly slept last night. Three more to go after this if I complete it. It's really bugging me that Christmas will be ruined.

I feel so bad because I know many of you have experienced far more than I have but I'm just so upset about doing this and not knowing if it's actually worth it. And I'm angry that I ended up stage 3. I went to the doctor for this in May of 2013 and they did an ultrasound but didn't look low enough to see anything. Then I was referred to the doctor that did the colonoscopy and he barely touched my stomach and said he figured it was just my IBS. I didn't get in for the colonoscopy until Dec 23 and that was only because my family doctor was pushing to have it moved up. I can't help but wonder at what point I could have been treated less invasively. By the time they figured it out I had to have chemo and radiation because the tumour was so big. And an ostomy first because it had completely blocked my colon. The tumour had torn my colon and I had three lymph nodes involved. Would six months earlier have put me in a stage two? And I wouldn't have had to have the chemo and radiation? I feel let down by the system and have lost faith in some doctors. And my onc is wishy washy and does not inspire confidence.

Jan

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

Tell youself its only two more after the next one. I know it sounds silly, but that is what I did with radiation. I jumped ahead to make it sound better. The mind is a funny thing. Yeah, tell yourself 'only two more after the next one'. 

Don't fret about your CEA now. Wait until you're finished (and you are going to finish) and then ask your Onc for a CEA draw. Ask the facility (hospital, wherever you go for your blood draw) how long before they get the results (my blood gets sent to Texas and takes two days), then go back in and request your results. You don't have to wait for the Oncologist appointment. 

I have read many of my results before the Oncologist even gets them. 

Once your treatment is over (and its only two after then next one), you should be scheduled for a CT scan. 

Gird yourself up my friend, you can do this. 

As for Christmas, can you get someone to decorate your bedroom? Put your tree in there, put up the Christmas cards in there. Make the room you spend the most time in, your Christmas room.  Ask family to help with a Christmas dinner, even if its just soup. Call it a Christmas soup, or aif you can only eat certain things, call them Christmas food. Like I said before, the mind is an interesting organ, and you can make it believe whatever.

Last night, when I couldn't sleep, I laid their and pretended I was an Elf in Lothlorien (I've been reading and watching Lord of the Rings). It soothed me to sleep, and even though it took me a while, it was very pleasant while  . 

Do what it takes to make it through if you can. 

Really, just two more after the next one. You can do it. We're beside you all the way. 

Sue - Trubrit

 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

I had my CEA results every 6 weeks it was the only way for him to check if chemo was working, or in my case three chemos not working. The nurses would give me a copy of the blood work each Visit. 

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

Thank you for the support. I didn't go to my onc appointment on Friday and her nurse left me a cranky message this morning telling me I need to be more responsible for my appointments. I've missed the last two but the one before I was too sick to go and called to tell them. On Friday I didn't call but to tell me I need to be more responsible annoyed me big time. It costs me about 25 bucks every time I go there between parking and gas as we live out of town. There's not enough parking so I have to get there early and drive around until I finally get a spot. On Friday it was -24C (-11F) and I can't walk through the huge parking lot with that kind of cold, I have to be dropped off. So I didn't go but I should have called. I guess it was my passive aggressive way of dealing with her. I hate having to drive so far and have the hassle of the cold and she's ALWAYS late, sometimes I've sat there for over an hour, just to be told that things look good. Things look good because they're just checking my overall health, not my CEA.

Dammit, I wish I'd fired her before this chemo.

Cranky Jan

Trubrit's picture
Trubrit
Posts: 4894
Joined: Jan 2013

You must go to your appointments (there, I sound like your nurse). 

My husband drove me the 360 miles round trip, every two weeks to get my chemo. Sometimes it was snowing so bad we could hardly see the road.

 -25 is cold though, and I know it hurts to breath when it is that cold. Just tell yourself that whenever you put off a treatment, then it only makes it longer before you're finished. 

Right, I shall get down off my wall now. I don't mean to be preachy, but missing appointments just makes it worse for you in the long-run. 

Sue - Trubrit

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

Okay, 360 miles is a long drive, wow. I have an hour drive and have to do it the Friday to see her which seems like a complete waste of time and money and then again on the Monday right after for the chemo. I did get them to give me a req for CEA results, though!

I did treatment number five today and tried to keep my hands cool while it was coming in. I may be proved wrong later but at this point I think I have less cold sensitivity than I did when I was done the last treatment. I'm cautiously optimistic. Laughing

Jan

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

The one before makes sense because they're taking your bloodwork just to make sure you can do the next chemo but the one after seems like a money maker.  If you do nothing but walk in, she checks you over, then you can skip that appt.  I never had to go to one after, just the one before to get my bloodwork done and check my pressure.  If you feel like two appts are a waste, just tell her you want the one.  She would have to give you a good reason for the second.  I can't think of what that would be.

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

Sorry, no I go for one to talk to her and the other is the chemo. So just two times there and no follow up appointment. I don't like her and feel that it could just be done by phone now that it's so cold here and such a pia to get there. And I didn't appreciate the nurse's message at all. But she did give me a form so I could get my CEA results. First she told me to just write it myself on my regular req. Is that professional? It would be like a kid writing a fake note from their parents.

So now I'm scared to do it! If they're low then I want to know, if they're high I don't.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

You should know.  Knowing what you're working with is important.  You are the patient, you don't need to sign a form, it's your own info, she should just give it to you.  Mine are posted online.  Normally you only need the form if you are allowing someone else to see them or speak on your behalf.  I had to sign a form for my sister to talk to my doctor and vise versa. 

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

Do you have a handicap plaque?  Your ONC can get you one.  Although, I know most at the clinic PATIENTS USE THEM.  

 

I had an hour commute to work, worked 10 hours, then 1.5 hour commute to cancer clinic, then 35 minute drive home.   Towards the end I needed help, last two visits.   I look back now and wonder how I did it and maintain a home and put dinner on the table. Wow to me.  All this so I wouldn't lose my job. Then I did lose my job, and what can I say they will never forget my name. 

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

They don't give out the handicap cards for cancer patients. I hate to say it but here would be a lot more cards out there if they did! Maybe then the handicap spots wouldn't be sitting there half empty.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

They sure do.  If you are not able to walk a distance, you are handicapped.  Chemo can knock the heck out of you.  And with oxilaplatin and the cold, you need it.  It's a temporary pass but it's definitely a valid pass.  They don't give it out for general cancer but they give it out if treatment knocks you down.  I had the option to get one.  I was taking the train into the city so I didn't need it but my doctor was willing to sign for it.

Nana b's picture
Nana b
Posts: 3045
Joined: May 2009

That's crazy I have one, try your PCP, mine siad Terminal cancer as a reason.  It's a temporary one byt it can be renewed.

Easyflip's picture
Easyflip
Posts: 588
Joined: May 2013

So horrible. I did all 12 folfox treatments but my blood counts were so low they cut the oxy in half for number 11 and omitted it altogether for number 12. Oxy is the really harsh one so maybe they can reduce it for you. Good luck and talk to your doctor, tell her how you feel, same with the mean nurse, they need to be more sympathetic!

Eastflip/Richard

hippiechicks
Posts: 509
Joined: Sep 2012

I have a good feeling that you can get through this!  You are really really close to the end of your tx.  This sounds to me more like you are angry about the holiday.  

I can tell you that I totally relate. I had my first tx as 12  Folfox ... (5FU/Oxy) right in the middle of Thanksgiving, Christmas, New Years and Easter, wait .. my birthday and anniversary as well. It was historically one of the coldest winters here with most of it below 0. I may have manipulated the dates so I could "enjoy" the holiday's a bit more, but I also finished all 12 on the 5FU, had the oxy cut back several times throughout tx,  and held completely for the last tx.  I thought I would feel a lot better on that last one because of the oxy being held, but I was wrong.  I felt the same as always, just estatic it was all over with.

We all do feel exactly as you do right now.  But, if you were recommended for the tx and can just push through .. then it sounds to me like you should continue.  The meetings with your doctor are to be sure that you CAN continue.  I would be sure to tell your oncologist every little thing that is going on .. and take it from there.  As for if the tx are working .. you may never know.  I thought for sure they were .. I did start at the 6 week mark after my first surgery.  I did the best I could, having to delay a few weeks here and there for blood counts to raise to adequate levels, and in the end I still recurred and was bumped from stage III to IV.  

I had surgery again, this time my recovery was delayed, and so was my next rounds of tx. Faced with the same delema, I opted to go forward, and I have remained NED since.  That time I did Folfiri (5FU plus Irinitican) .. It was hard, I wanted to quit both times around tx #5 .. but pushed through all 12. There were delays during both tx's due to blood counts or just having to severe of side effects.

Counting as "only 2 more" after this one definitely got me through as well as my doctors, spouse, this forum, and my Mom. I can not bare to see my Mom so sad as when I was diagnosed with colon cancer at such a young age.  So I fight.  I am determined to beat the odds and I will continue to fight ... I also love life just a little too much to give it to cancer just yet. 

My thoughts are .. if you can do it .. then try your best .. because we were given a gift.  We have a purpose.  We need to be sure we are doing our best to fufill it however that may be.  I would try to get a parking pass for sure!!  Your PCP should be able to help you with that.  

As for your question on if the few months would have made a difference, that is tough to say. I have been told that my children need to be checked 10 years before my dx date, because colon cancer is a very slow growing cancer.  I was stage III at that time. 

I did not have my CEA tested during Folfox .. I think once at the beginning and once at the end.  It is not always a good marker for cancer either. Mine for instance was under 1 and I had a known growing large tumor. I have heard somewhere in this journey of mine that for some CEA will only rise if there is liver involvement. I have not had that yet so may explain why mine has always been normal, and I am stage IV.

I am sending you all the cyber strength I can to help get you through this.  Go, go, go!!! Rest as much as you can between your tx's .. eat when you can, get nice and strong. Talk to your doctors ... they can help, if one does not seem to help, try talking to a different member of your team. You deserve to be heard.

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

Thank you hippiechicks. I'm having so much easier of a time with this last chemo treatment that I know I can stick this out. Hopefully it will continue this way.

I think I'm having a hard time because I was originally told that this will take about eight months in total and it's going to be much longer. It's already been almost a year. We're having major money problems with me not working and not being eligible for assistance. My husband has been pretty good but is coming to the end of his rope and is resenting how much he has to do because I can't and he's being unreasonable and nasty. I'm bored and lonely and have nothing to do or look forward to because I can't go do anything. I have creditors calling several times every day because my husband won't pay my credit card bills and they won't work with me and don't care when I tell them I have no money and try to explain. I'm scared of whether or not I'll be able to work once this is over and if it will only be part time and who will hire me at 51 years old and having had cancer. My husband expects me to do all the housework and cooking and even said the other day that if he had the cold sensitivity he'd learn to ignore it. He got mad yesterday about having to shovel and why can't I do it. Seriously?? He's used to me and my daughter that lives at home doing things like that and he's become very sedentary over the last few years and just sits in front of his computer while he lets us do the work. I even helped her lift and relay sidewalk blocks on her side of the house as well as bringing in sand for under them and filling the side yard with gravel for her dog a week before I started this last chemo regimen. He putterd in the garage while we did all of this and ignored us. He's refusing to put up our outdoor Christmas lights because he doesn't feel like putting them up so we'll be the only hoiuse on our block without them. he says if I want them ic an do it myself. Right.

And I don't like my oncologist and feel that she's wishy washy and useless. Everything I bring up with her she blows off or says it's nothing to do with the chemo. I'm mad at myself for not asking for a new one before this round of chemo. And getting a scolding the other day from her nurse really mad me angry. Sorry, spending $25 every time I have to drive in and sit there for an hour so I can just be told that my blood looks fine and do I have any issues that then are minimized seems so pointless. Plus the cold walk to and from the car that's a nightmare because it's so cold here now that it's winter means I have to get someone to go with me.

Helen321's picture
Helen321
Posts: 1393
Joined: May 2012

Hang in there.  Tell your doctor about the money situation.  My doctor was very reasonable.  It's not too late to change doctors to a nicer one either, it's never too late.  Even in the same hospital, you can ask for a new one.  Your doctor is not going to be sensitive to a patient changing to another doctor, she's a doctor, it happens.  Do what is best for you.  It's very confusing when it's all new, I swore my doctor was incompetent, I'm still not sure who was competent, it seems like they're all just guessing.  I was so confused in the beginning but then suddenly a lot of the terms and treatments make more sense as you get more info and ask more questions. 

LivinginNH's picture
LivinginNH
Posts: 1458
Joined: Apr 2010

Yup

You're right, they are just guessing.  Rick's HIPEC surgeon once candidly told me that the oncologists have a list of available drugs, and they usually start with Folfox (for insurance reasons-it's the first line drug), then when that fails, they work their way down the list by then adding Avastin, if that doesn't work, they move on to Folfiri and/or with Avastin, until there's nothing left to try.  So, basically, ANYONE can be an oncologist from his description of their job!!  And that's pretty much the way I saw it too, but he just confirmed it for me.  I'll never forget the last appointment we had at Dana Farber.  After Folfiri failed, Rick's oncologist simply stated, (with a smile mind you), "Well, there's nothing left for me to give you, so we're all done here.  Take care."  And that was it.

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JanJan63
Posts: 2482
Joined: Sep 2014

OMG...

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TheLadySkye
Posts: 195
Joined: Oct 2013

That is just...beyond awful :(

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TheLadySkye
Posts: 195
Joined: Oct 2013

My experience with FOLFOX - 9 cycles with the whole shebang.  Cycle 10, they took away the 5FU bolus because my labs were in the toilet and they had to postpone a couple treatments and well...one can't just keep postponing.  Still had oxaliplatin and the 48 hours 5FU.  Labs still not awesome, but just high enough to continue treatment.  Cycle 11, they took away the oxaliplatin part of it because of the neuropathy.  It was suggested that the impact of removing it one treatment early would be negligible - apparently most people lose the oxaliplatin at some point due to side effects (often around the halfway mark).  So just the 5FU-48 hour fanny pack for the last session.

Did it all work?  Here's hoping.  I had another six month scan today and am praying for the all clear.  It will be 16 months since surgery to remove the tumor. 

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