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which way to go

dancer2
Posts: 49
Joined: Jul 2016

hi, new here but my story began last Oct. when my surgeon found a tumor while trying to give a colonoscopy. The op was successful, got clean margins, 14 nodes were tested and found cancer free. But there was perineural invasion present and one liver lesion she tried to find laproscopically but could not find it. The pet scan showed one spot in each lung apparently to small to biopsy. Had biopsy done on liver and it was from the colon. Oncologist gave me three rounds of oxy with xoloda but stopped as my blood levels dropped and said since the lesion had not grown or shrunk that told him the chemo I was on was not working and he didn't want to do any more harm and sent me to an interventionalist radiologist who said I could have a resection but he could also do an ablation and since i liked the way he talked and assured me he could get it all and it would cure that one lesion and was good enough to tell me but that it was just for that lesion and others could pop up. After the procedure i went back about a month later and had contrast scan which showed it was successful and he saw no new ones in the liver or lungs. I was scheduled to see my oncologist a month after that talk but he (oncologist) made me go have another pt/ct scan and when he saw me he just said your liver glows and you have five new lung nodules and see you in three months. So i went back to the radiologist to see if he could enlighten me and he saw the disk from the scans and agreed with the new report which said basically I have four new lesions the largest one was 2.6 by 2.1 cm suv 6.8 and it glowed like the sun on the ct scan but the other three did not have any light in them. The pt scan ( he put them side by side) you could see two glow spots. But the lung nodules , tho now one is 8mm did not show up on pt scan. His advice was that he could ablate the large one and get it, but because of the other three were on the periphery of the liver he could not do that procedure but thought embolization (seeding) was probably the best way to go. I told him my oncologist who he thinks well of basically told me he could not give me chemo since he didn't know if it was from my melanoma or colon and yes, forgot to say earlier that I had just found out about a spot on my cheek right before my colon surgery was to be done and which was put off a few weeks while i went for a second opinion for that, of which ended in a flap surgery ( successful, clear sentinal node) in Jan.  By that time i had two chemo sessions behind me, had to wait a six weeks to have the third one. Went back for the fourth but he nixed it because of what i mentioned earlier....I am seeing another radiologist highly recommended to me who is a radiologist/oncologist to see what he thinks but from what i told him on the phone he thought that the emobolization was a good idea as he knew the radiologist and trusted his judgement and suggested i also go see my original (colon) surgeon because he thinks highly of her, to see what she thinks because she keeps up with the latest since she operates on colon/rectal cancers. So here I am, sitting and wondering how so many spots showed up in one months time. Since only the biggest one glowed on ct scan, the radiologist told me he could biopsy while ablating the big one. But he also said he was very certain they were from the colon. Was going to call a major center but after reading so much, i almost feel like I know what can be done. There are only so many things out there and if they can be done here why go? But will wait and point blank ask my surgeon and this new radiologist/oncologist who did mention immunotherapy/stem cell therapies etc...........as did the surgeon who did the op on the face which is or seems to be healing nicely as a big chunk was removed but was grafted......I will also ask them if going to a major center would give me any other choices..........any thoughts?  And my prayers go out to all of you because i have been reading this blog for months now and finally thought it time to join in....

beaumontdave's picture
beaumontdave
Posts: 1063
Joined: Aug 2013

Welcome to the blog and sorry about reasons why your here. I've read your story several times to understand where your at, but I'm still a bit confused. As of now you have somthing small in the peritoneum, several small nodules in the lungs, and four lesions in the liver with the bigger one being the only thing that lit up on the PET scan. If that's right, my thought is if resection isn't an option, I'd be pushing the spheres procedure as quick as they're willing to do it.  What do they propose for the other spots? I also didn't understand why the radiologist would tell you your liver glowed, your lungs had nodules[?], and see you in three months? Where's the sense of urgency? If a major cancer center is available, I'd sure be making inquiries, while pushing the current group to do something. That may just be me, I hate indecisiveness. If I'm misunderstanding anything, let me know, and I'm glad you finally joined in, it made me feel better when I finally did..................................Dave

dancer2
Posts: 49
Joined: Jul 2016

Thanks for replying..I tried to put a lot in at once I know. But the last scan in the middle of July my oncologist did not specify how many new lesions popped up since the last scan done by the interventionalist radiologist who did the rfa on the single lesion in my liver at the end of April and who had me do a ct contrast scan for him at the end of May of which told him the ablation was a success, nothing new in the liver or the lungs but the two nodules ( to small to test) were still there also, everything else looked good. Then five weeks later had to do a ct/pt scan for oncologist who said just that the liver glowed and i had five or six new lung spots and he could not give me chemo since he didn't know if the new lesions were from the colon or the melanoma and i didn't think to ask about the report so went back to the radiologist who did the ablation for clarification. He said that five or six new spots showed up in left lobe of lung and just the one in the right which i suppose was one of the original two. With the largest being 8mm with very low suv. Four new lesions in the liver. 3 in the, i call it the right side and one in the left........no mention of size in the report except for the largest with the high suv intensity. The radiologist told me he could ablate the big one since it was central but the others were on the periphery of the liver and said if I was his sister or such he would recommend the Therasphere procedure. I mentioned resection, but he said he doubted any surgeon would do the surgery?  I was a little surprised and just asked him if he would be offended if I went for another opinion. He said of course not, do get two more. He is very nice and may have to go back to him....my oncologist is nice also, but like you, i want things out of me not this waiting around business. So, another Dr. and his wife are friends and they suggested another radiologist/oncologist and so I have an appt. with him this week for his opinion. Then will also go back to see my colon surgeon to see what she has to say. Am i confusing enough? I like specific answers, not this 'see you in three months' without any referrals to go see any other kind of doctor. I really want to see a liver specialist but don't think there are any here. Thought of going to Arizona since they have a Mayo Clinic and a CC of America........LA is also just five hours away also. Yes, there seems to be no sense of urgency except from me. I should have had a resection on the small lesion that was ablated but the radiologist is highly regarded as is my oncologist and the radiologist when i just had the one less than two months ago told me he saw no reason why i could not have a resection but he was sure he could kill the spot, which he did and he was thorough and reminded me that it just meant that spot would not come back but others may pop up, which they did. The radiologist went over the scans with me , had them on the pc side by side, so saw the four new spots, you could not miss the big one on the ct scan as it looked like a camera flash, the others just looked the scar he showed me after doing the lesion. The pt scan showed two glows. The central largest one and one half the size at the periphery, that was all the glow......so it was the oncologist who just said see you in three months but did not recommend me to go back and see the radiologist which i find disturbing. I went on my own. Maybe I will see if my original surgeon agrees and what she thinks and what the new rad/onc doc think...he i believe is the only one here that uses the True Beam procedure tho he didn't mention it when he was kind enough to get on phone with me and quickly got as much info out of me as he could, but he knows and likes the radiologist i saw and thinks highly of my colon surgeon. We shall see after he sees me in person...........sorry to be so long winded here and hope i clarified matters.........I feel just fine and want to get on with it.....once again, thank you for replying as this forum has been a wealth of info because as we all must have felt in the beginning 'who to trust'.......

Elizabeth

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Welcome to the board, and sorry you had to join.  I never had mets to the liver or lungs, just peritoneum so I don't know about those specific procedures.  I say get that second, or even third opinion!  I would not be able to live with a see you in three months comment either.  I would be saying buh-bye!  I live in LA so I went to Dr. Lenz at USC.  He's great, love him.  My HMO didn't cover him but I sucked up the cost of a few appointments over the years.  He's always up on the latest and told me about HIPEC for peritoneal mets.  My HMO still took care of all my treatments, including HIPEC surgery.  If FOLFOX didn't do the trick why isn't your oncologist at least suggesting FOLFIRI?  Maybe it's because of the skin vs. colon cancer. Best of luck to you, Traci

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

Oh my, Traci. You could have joined Yolllimbs, me and Laz in May when I came to LA to visit (well, Huntingdon Beach, but we all met at Rodondo Beach).  If you're interested in meeting, I plan on another visit in the fall. We are also hoping to have BeaumonthDave joine us. Twould be fun. 

SUE

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Sue - If I'm available, I'm game.  Would love to meet you.  Traci

danker
Posts: 1253
Joined: Apr 2012

Let me know when and where you are meeting in LA.  I would like to see my two boys who live in the area,and meet with all of you as well.  Indeed it would be fun!!!

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

That would be just so neat.  I must look at dates, and get in touch with Yollimbs. 

SUE

dancer2
Posts: 49
Joined: Jul 2016

The latest for me is that i saw the rad/onc today and i shall try be brief. Bottom line is that he was in agreement with the rad who did the ablation and with the theraspheres. Since he works with radiation he thought that would do more harm than good and that my onc was probably doing the best by not having me do more chemo since my tumors maybe resistant to it. By doing that, the doc i saw today told me the onc was probably doing me a favor. He told me if i wanted to get the best opinion from the best in the world for colon/rectal oncology would be to see a Dr. Grothey at the Mayo in Rochester, MN. Otherwise, I should go back to the rad who did the ablation because he thought he was the best around this region, knew what he was doing and he also thought it would be a good step. Not his words however. Since they can do seeding by chemo or radiation the doc who does it has to know how to calibrate the amount for each individual is different and has to take in a lot of variables to get the dose correct. Otherwise, they can do more harm to the liver than good. Obviously i am a hard case. But aren't we all..........We shall see. Elizabeth

traci43's picture
traci43
Posts: 775
Joined: Jul 2007

Elizabeth - well it sounds like you're in pretty good hands there, but if you can get in to see Dr. Grothey do it.  It certainly can't hurt.  I hope that you'll come up with a treatment plan that works for you.  Traci

dancer2
Posts: 49
Joined: Jul 2016

Thank you Traci, I appreciate the feedback as I am a little at a loss here. Nothing going in to kill the floating c cells and so far the only doc who suggested a therapy was the original radiologist who did the ablation just three months ago. Only now i have four more plus multiple lung spots that have yet to be determined but are considered suspicious. Other than that I am in pretty good shape with no other health issues. I have read a number of your posts and am very happy that you have done so well and come so far. Next for me is to see my colon rectal surgeon and see what her thoughts are and have to make up my mind between flying out for an opinion or stay here and do the spheres...Elizabeth

dancer2
Posts: 49
Joined: Jul 2016

the latest for me is that i saw my colon surgeon who was also puzzeled by my oncologist to just come back in three months and she point blank told me that metastasized cancer has to be treated systemically and suggested to me to go see this other doctor........which i see very soon. i had already read enough to know that much. so we shall see what this new hemotologist/oncologist/internist doc has to say...........

sashinka
Posts: 13
Joined: Aug 2016

Going  on Tues. For 3rd sEssion at MSK. IS THIS STUFF CUMULATIVE? Right now I feel fine after the second week of the session. What can I expect? Onc. Said I need at least 5 sessions total.

dancer2
Posts: 49
Joined: Jul 2016

I can only go by me.....after being left with no systemics for metatstic colon cancer after three sessions with oxy/xeloda, the doc saw no new growth, but no shrinkage of liver spot or growth to it.........so sent me to have it ablated, which i did. it was a success, however, a month later four news had popped up in liver and six or so in lungs, then still would not give me and chemo.......folfox i do not know about but apparently others do. i'm very disturbed by all of this 'come back in three months' i have been told twice and hopefully this new doc i see will get me on some regimen. as for cumulative, i believe it can be different in everyone, some handle it better than others. the drugs i was only on for three sessions bothered me but xeloda is taken by mouth at home and i ended up throwing it up and got terribly constipated, so if that happens make sure you find a way to keep your bowels moving as that will help the way you feel.....just type in folfox in search on this site and i believe you will find a lot of info from others.

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

It is cumulative. That doesn't mean you are going to really suffer, as it all depends on how your body handles it. 

I went into this Cancer journey a very healthy person, and I was hit hard by the side effects. They were really dibilitating (I had nine FOLFOX treatments).  I know folks here who continued to work throughout, and even though they did have side effects, it wasn't quite so bad.  Thats the problem, you just don't know how its going to effect you until you go through it. 

If you're interested in what all side effects you can have (I think I pretty much covered the gamet), I will post my list.

Good luck on your 3rd treatment. 

SUE

dancer2
Posts: 49
Joined: Jul 2016

Sue, this is dancer2. I went into this with no health problems and the three sessions of oxy/xeloda did a number on me but I got through it...didn't like the sensitivity to cold or the constipation ( the worst) and only got one shot for the neutropenia. Have a new doc now and i go next week ( with a port in chest) and go for three days wearing the fanny pack, off for two weeks and go back. Not sure how long as of yet. Also, not sure if FOLFOX and FLOFIRI? are the same and get Avastin along with it and the wbc shots. Do you mind sharing your reactions? And did you have success with folfox, etc?

Elizabeth

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

(I can't remember where I got that quote from)  Dancer2, Here is my list. 

http://csn.cancer.org/node/292593

SUE

ellend
Posts: 95
Joined: Apr 2016

I am on 3 of 8 treatments of what I think is FOLFOX. (Oxypilatin, 5FU with Leucovorin) and a 5FU pump for 48 hours. My oncologist took out the 5FU with Leucovorin on the 3rd treatment due to low platelet count. I am still on the pump though.

I have an iliostomy so I can't respond to digestive issues. I did get the sensitivity to the cold in the mouth, hands and feet after the 1st treatment. I use gloves to get things out of the refrigerator and drink lukewarm liquids. I also got the painful jaw syndrome, where it sometimes hurts to chew or yawn. I have been moisturizing my hands and feet as they want to tend to crack. My hair is also thinning. It seems like I'm shedding a lot, but it is hard to tell because I had a lot of hair to begin with.

Supposedly this treatment is not supposed to lead to major hair loss, but some people seem to be more affected than others. The cold sensitivity and peripheral neuropathy appear to be a more common symptom. So far, I haven't suffered from some of the more serious side-effects, knock on wood.

Good luck

Ellen

dancer2
Posts: 49
Joined: Jul 2016

Avastin, irinitocan( folfiri?), and 5FU are what I will be taking. Personally I'd like all the liver mets taken out, but when i asked this new doctor she, if I remember correctly, said that a lot of these drugs can 'melt' the mets away and didn't mention surgery. And since i came up with seven tiny new spots in the lungs ( which they are assuming I imagine) are from the colon and four more in the liver of which the largest glowed and if I remember another faintly  but the other two did not. And this was after I had the rfa on the only small met in the liver I had back from the beginning and only two small (2-4mm) spots in lungs. So after the ablation the radiologist said nothing new had popped up anywhere but a month later after another ct/pt scan the first oncologist  told me that news (four in liver, seven tiny ones in lungs) then said see you in three months. But, I had no treatment from the first week in March til July when those tests were done except for the ablation at the end of April. Happened fast. So I quickly tried to get something going systemically since my colon surgeon told me that 'it's' in your blood and you need chemo and she gave me a card of the new oncologist who quickly told me I needed to get a port in and start treatment asap..Hope I am in good hands. Don't think there are any liver specialists here, so I will keep asking her about it. Tho I only had three iv sessions with oxy/xeloda(pills for two weeds), I did get neuropathy in hands, throat, and jaws which usually lasted around a week and I also lost hair in the way of thinning. Mostly when I shampooed and brushed. Not to mention very bad constipation to which you have to take into your own (pardon me) hands.

Lost in the Nevada desert also Sue. No one had mentioned radiation or surgery to me as of  yet...........thank you everyone for all the good info.

Elizabeth

Trubrit's picture
Trubrit
Posts: 5193
Joined: Jan 2013

My Oncologist is in Reno, and I am very happy with him.

SUE

dancer2
Posts: 49
Joined: Jul 2016

Southern Nevada....I'll have to look up the meds on this site and see how they worked on most people. I know I have read a lot of the boards here and avastin, folfiri, 5FU are mentioned quite a bit....my first oncologist I liked, since I only had one small lesion in liver, and two tiny ones in the lungs which were very small, he was really going for a curative treatment or so he said, then it was a chronic illness til these other spots appeared after the successful ablation, then it was just 'see you in three months'.........so happy I was not.....so now I will see how this new one will go about it..I really have not had much time with her because it was  like 'let's get this stuff going into  you now'.....and only this one highly regarded radiologist/oncologist I saw just to get his ideas, told me after he talked to the interventionalist radiologist who did the ablation, he felt better about the seeding of the news ones, yet neither mentioned the fact I needed systemic help....what are your thoughts about that?

Elizabeth

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