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Abita, did you get your results today?

Ruthmomto4's picture
Ruthmomto4
Posts: 584
Joined: May 2013

from your pet scan? I am hoping you got good results and if not at least answers and a plan. Thinking of you!

abita's picture
abita
Posts: 549
Joined: Dec 2017

It is cancer. The original two spots from the ct are cancer. It is bad news, but I had imagined so many worse scenarios that I was almost relieved. Ablation is most likely not an option because of where mine are located. It was disappointing because he said that even if the chemo makes the spots of cancer go away, that they will always come back. That the only way for it not to come is when surgery gets it out. Which doesn't makes sense to me then why people bother doing mop up chemo after surgery. Anyway, before I was allergic to the oxaliplatin, it shrunk my tumors by half in 4 rounds. So, we are giving it a try. I have to be admitted to the hospital for 2 or 3 days. I get oxaliplatin very diluted over the whole day to become desensitized. It has to be inpatient so they can watch me. Then I have my 5fu. Then if it works to make me not allergic anymore, I get 8 more rounds of oxaliplatin. Actually, he said 4 rounds, but that a round is 2 infusions, so 8 infusions

abita's picture
abita
Posts: 549
Joined: Dec 2017

I have been meaning to post. Thank you for checking. But since I got home I have mostly just watched The Office reruns, had snacks, and pet cats while lying on couch. Oh, he is adding Avistan. Not sure why he didn't give me that the first time. It was so weird that I was relieved when it was just two spots of cancer. My brain went to some very horrible scenarios. But with two spots, I feel like I still have a fighting chance. And no matter that he told me repeatedly, I refuse to believe that it will always come back in less than a year each time I stop chemo.

Ruthmomto4's picture
Ruthmomto4
Posts: 584
Joined: May 2013

please reconsider a visit to Sloan, my husband’s tumor was in the caudate lobe close to the vena cava and his original surgeon said he wouldn’t touch it due to location. Sloan ablated it, they have so many surgeons who do these things so often they are willing to be more adventurous. Also you could then get the hai pump, you could still start your treatments with your current doctor just consider going to see what they say. 

My husbsnd did folfox with avastin at pathology his tumors were 95% dead but that 5% left I guess is an issue. mop up chemo is supposed to kill microscopic cells before they turn into tumors. I think more in the bloodstream though.

as for the Avastin the only two side effects my husband got was a blood clot near his port (which could have been all the chemo) and a very small rise in blood pressure like 150/90 they give him a diuretic blood pressure pill and he was fine. It’s normal now.

whatever you decide to do is your choice I promise not to suggest Sloan again. I am so sorry it came back, make sure you rest and pet those cats and snack away!!!!

abita's picture
abita
Posts: 549
Joined: Dec 2017

It is okay that you suggested Sloan. My family and friends are too. I actually faxed my paperwork over a week ago. Only the CT scan paperwork is online. When I called, she said fax over records so they can decide if my case is one they will take. And that the first appt is mid Sept. I am going to call Tues. I have honestly been a bit of a mess this last 2 and a half weeks. Sometimes it is much harder not having a caregiver/helper.

Ruthmomto4's picture
Ruthmomto4
Posts: 584
Joined: May 2013

it’s totally understandable!! this is hard scary stuff with lots of ups and downs and I am sure not having someone to help navigate and help you doesn’t make it easier.  I just didn’t want you to feel I was pushing Sloan at you since I suggested it a few times. I just know we were told chemo for life and that’s it before them. 

I know it’s  not me who is sick so I know it’s easy to say, but I have taken a new approach to my husband’s illness because the worrrying has taken a toll on me. I deal with no farther ahead than a week, and right now the week for his health looks good. Enjoy the long weekend, it looks good for you as well :)

abita's picture
abita
Posts: 549
Joined: Dec 2017

I think that is a good approach. And it is hard for caregivers too.

mountainhiker
Posts: 54
Joined: Aug 2018

abita,

You know from prior posts that I'm about as pro-MSK as anyone can be and I'm also a pump pusher.  If you can get in to see Dr. Kemeny, do it.  Even if you can't, there are plenty of other oncologists at MSK that can help you.  Without them I would most likely not be doing very well right now.

My understanding of chemo is that it works pretty good on stray cells and micrometastatic disease, but may not be that effective on eliminating solid tumors (it can shrink them, but sometimes just can't completely wipe them out).

I didn't realize you were going through this alone, but don't fret...you can do this and we are here to support you.  I do get to NYC for appts and to visit relatives (I live about 3 1/2 - 4 hrs away) so if there is anything I can do for you while up that way please let me know.

mountainhiker

Annabelle41415's picture
Annabelle41415
Posts: 6070
Joined: Feb 2009

I'm sorry that you didn't get better news.  I'm hoping that you get a second opinion and don't count any options out at this point.  Being in the hospital for that long for treatment has to be very difficult.  Glad that you are considering another opinion.

Kim

abita's picture
abita
Posts: 549
Joined: Dec 2017

I faxed my paperwork to MSK last week. I called today. She said she didn't know if someone got it, so I emailed it this time. I don't know if they are going to pick me for a second opinion, but I am going forward with setting the date for my hospital stint to desenstize myself to oxaliplatin so I can take it. 

Annabelle41415's picture
Annabelle41415
Posts: 6070
Joined: Feb 2009

I'm glad that you called, but I'd still follow up again very soon just to see if they got the e-mail.  They should be more aware of what paperword/fax has been received, especially when someone is looking for a second opinion.  Didn't know you could desensitize from Oxi as that would be a good option for many who have reaction to it.  Hope that works for you.

Kim

abita's picture
abita
Posts: 549
Joined: Dec 2017

She emailed me that she received it. Yeah, the desensitization takes the entire day and is inpatient. I wish this option had been presented to me when I could have kept taking oxaliplatin and it could have killed all the hidden cells so I could have been "cured" instead of now when I will always have to "manage" my illness. I know anger isn't productive, but I am mad.

Annabelle41415's picture
Annabelle41415
Posts: 6070
Joined: Feb 2009

I'm able to find more information on this board than the doctor's ever told me about.  They never discussed the side effects of the Oxi with me and now I'm on medication daily because of it.  It's a good thing to maybe check here when we are curious about situations because most of my knowledge came from this board, certainly not my doctors.  Don't blame you for being mad.

Kim

PamRav's picture
PamRav
Posts: 238
Joined: Jan 2017

Abita,  I took the oxy. Had 3 surgeries did some more chemo and I’m basically where you are now, except the cancer has moved on to my lungs   So that’s the third organ the cancer has visited so far   Please don’t spend time fretting over what you could have, might  have would have done   This crap has a life of its own   I really do think Sloan will have some better options for you  so keep your head up  

all the best 

pam 

 

 

abita's picture
abita
Posts: 549
Joined: Dec 2017

I am seriously thinking about buying the elliptical machine I use at the gym. It will be the same cost of 22 months of membership, and I am more likely to work out when I only feel up to 20 or 30 minutes of cardio. Plus, my gym is an hour away, so I feel like I will never go once I start chemo. What do you think? Exercise is important, when you can.

mountainhiker
Posts: 54
Joined: Aug 2018

...and take a nice brisk walk every day.  

mountainhiker

abita's picture
abita
Posts: 549
Joined: Dec 2017

Yeah, I am in the northeast and will be on oxaliplatin,  won't be going outside much :)

Mikenh's picture
Mikenh
Posts: 777
Joined: Oct 2017

That brought back some unpleasant memories.

Ruthmomto4's picture
Ruthmomto4
Posts: 584
Joined: May 2013

and you can afford it, yes you should!

abita's picture
abita
Posts: 549
Joined: Dec 2017

I ordered it today!

SandiaBuddy's picture
SandiaBuddy
Posts: 802
Joined: Apr 2017

Exercise is one of our best defenses against cancer, in my opinion.  If you will use the machine, you should get it, it is a matter of health.  I always tell myself this when I need new running shoes or other equipment--it is a medical expense.

abita's picture
abita
Posts: 549
Joined: Dec 2017

I ordered it today. I did read that it helps fight cancer. I hope it helps recurrences too. 

SandiaBuddy's picture
SandiaBuddy
Posts: 802
Joined: Apr 2017

Good for you.  It is comforting to know that you are doing everything in your power to fight this.  I do believe that exercise helps with recurrences.

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