1st bad scanning... advice please!!

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ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: 1st bad scanning... advice please!!

Postby ginabeewell » Thu Nov 14, 2019 12:48 pm

You might want to post a new thread about the pump plus Avastin. I hadn’t heard that was a no-no, but it could be that I just wasn’t tuned in because I wasn’t on Avastin!!

I started FOLFOX + Vectibix in October, had a seven week chemo break Dec / Jan due to infection and my consult at MSK early Feb. They opted to continue my current treatment and scheduled me for colon resection / pump placement late March.

The pump is only filled with chemo once a month; alternating times it just gets filled with saline. And the pump needs to continue to get the saline flushed once treatment is done, for several years. Luckily Northwestern was willing to learn how to do that, and I think others have had luck with local facilities too.

Still might be kind of fun to relocate to NY for six months if you could at your age! But that six months can stretch out once you consider time for surgery and then 4-6 months mop up chemo. So just something to consider.
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

Claudine
Posts: 179
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: 1st bad scanning... advice please!!

Postby Claudine » Thu Nov 14, 2019 12:54 pm

I'd be surprised if any surgery could be done while on Avastin, considering that my husband isn't even allowed to get his teeth cleaned :(
Wife of Dx 04/2018 (51 yo). MSS, KRAS mutated G12A
No primary, lytic tumor L4 vertebrae, CEA 10
Radiation 04/2018
Resection small intestine 05/18 (no cancer found - Crohn's)
Xelox * 6, 05/2018 to 10/2018
6.7 cm left adrenal mass 03/14/2019, 4.4 cm 05/21, 4.1 cm 09/16
SBRT L4 02/2019
Folfiri + Avastin
CEA since 03/15: 58, then low of 3.2 now 6.9
Scan 03/14: Multiple small lung nodules
Scan 05/21: shrinking
Scan 09/16: lungs show no abnormalities (YAY!!!)

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Thu Nov 14, 2019 1:00 pm

Claudine wrote:I'd be surprised if any surgery could be done while on Avastin, considering that my husband isn't even allowed to get his teeth cleaned :(


Yeah that's what I was afraid of. Then the question is whether he should start on chemo first or get the pump installed. Probably chemo, huh?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Thu Nov 14, 2019 1:03 pm

ginabeewell wrote:You might want to post a new thread about the pump plus Avastin. I hadn’t heard that was a no-no, but it could be that I just wasn’t tuned in because I wasn’t on Avastin!!

I started FOLFOX + Vectibix in October, had a seven week chemo break Dec / Jan due to infection and my consult at MSK early Feb. They opted to continue my current treatment and scheduled me for colon resection / pump placement late March.

The pump is only filled with chemo once a month; alternating times it just gets filled with saline. And the pump needs to continue to get the saline flushed once treatment is done, for several years. Luckily Northwestern was willing to learn how to do that, and I think others have had luck with local facilities too.

Still might be kind of fun to relocate to NY for six months if you could at your age! But that six months can stretch out once you consider time for surgery and then 4-6 months mop up chemo. So just something to consider.


Yeah true, might be fun! I have work I can do wherever, as long as I have my laptop, so that helps. Did your mets grow during your chemo break? Jesper's cancer seems pretty aggressive - his CEA went up from 210 to 1100 during his 9-week chemo break. Still, it's super low compared to 70,000 at diagnosis. But he also responds super well to chemo, so that's a good thing of course.

I really hope I hear back from them tomorrow! So many things to consider... I don't know if they'll even offer the pump when he has so many lung mets. Hope so.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

rachelfromnyc
Posts: 18
Joined: Fri Oct 04, 2019 11:32 am

Re: 1st bad scanning... advice please!!

Postby rachelfromnyc » Thu Nov 14, 2019 1:05 pm

I texted my friend who is a nurse at MSK, works under a medical oncologist in their GI service. She said that Avastin has to be stopped when getting a pump placed because of risk of bleeding. It can be restarted after a sufficient time for healing. Hope this helps.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

rachelfromnyc
Posts: 18
Joined: Fri Oct 04, 2019 11:32 am

Re: 1st bad scanning... advice please!!

Postby rachelfromnyc » Thu Nov 14, 2019 1:07 pm

PS- I am on Avastin and I get daily nosebleeds... boohoo
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Thu Nov 14, 2019 2:00 pm

rachelfromnyc wrote:I texted my friend who is a nurse at MSK, works under a medical oncologist in their GI service. She said that Avastin has to be stopped when getting a pump placed because of risk of bleeding. It can be restarted after a sufficient time for healing. Hope this helps.


Thank you! Yeah I had a feeling. But I feel like with his progression they might not want to delay chemo further, waiting for him to heal, etc. Maybe we can start with just FOLFOX and add in Avastin next time or something... I don't know. I'll make sure to get them on the phone tomorrow. Or wait, maybe even today! It's late in Denmark but I guess MSK is still open.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AmyG
Posts: 296
Joined: Tue Dec 25, 2018 8:08 pm

Re: 1st bad scanning... advice please!!

Postby AmyG » Thu Nov 14, 2019 5:18 pm

rachelfromnyc wrote:PS- I am on Avastin and I get daily nosebleeds... boohoo


I hated that part. So glad to be off of it!

Hope Jesper gets a plan of action soon! Yall hang in there.
42 dx @ 9wks pregnant w/baby #8 8/18
Sigmoid colon resection 9/18
Adenocarcinoma, G2, T3N0M0..or so we thought
KRAS/BRAF wild
Liver biopsy is malignant, stage iv now boys!
Delivered healthy baby 3/19
FOLFOX + Avastin 5/19
CEA 167 to 24 after 4 rounds
Liver resection 8/28/19
NED!! CEA 2.3

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Fri Nov 15, 2019 6:05 am

AmyG wrote:
rachelfromnyc wrote:PS- I am on Avastin and I get daily nosebleeds... boohoo


I hated that part. So glad to be off of it!

Hope Jesper gets a plan of action soon! Yall hang in there.


Thanks Amy! I really hope MSK are less doom-and-gloom than our local oncologist. He's a nice guy, but is definitely a fan of reminding us that there is a big chance he can't be cured. We don't want some unicorn unrealistic doctor, but there's gotta be something in between....
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

rachelfromnyc
Posts: 18
Joined: Fri Oct 04, 2019 11:32 am

Re: 1st bad scanning... advice please!!

Postby rachelfromnyc » Mon Nov 18, 2019 5:13 pm

Hey Alexandra, any luck with MSK? I was at 53rd St. today for treatment and the waiting room was the most crowded I've ever seen it. I asked around and a nurse told me Dr. K is in clinic on Mondays (I usually go on a different day) and from being around here, I know she is quite popular! Sending you good thoughts.
37 at dx May '19, one month after my bday
5/19: 3.4 cm mass in transverse colon, enlarged distant lymph nodes, innumerable lung nodules; CEA 13.2 ng/mL
5/19: FNA of supraclavicular lymph nodes positive for disease
6/19 to 9/19: 6 cycles of FOLFOX; CEA 3.9 ng/mL
7/19: CEA 4.3 ng/ml
10/19: CT scan shows primary tumor stable, lymph nodes shrinking and disease progression in liver; CEA 4.8 ng/mL
10/19: Start FOLFIRI with Avastin, planned 6 rounds

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 18, 2019 5:18 pm

rachelfromnyc wrote:Hey Alexandra, any luck with MSK? I was at 53rd St. today for treatment and the waiting room was the most crowded I've ever seen it. I asked around and a nurse told me Dr. K is in clinic on Mondays (I usually go on a different day) and from being around here, I know she is quite popular! Sending you good thoughts.


Thank you so much for thinking of me, Rachel! I called them three times today. Apparently Jesper's medical files are with the clinical team now. The representative on his case told me she wants to give me an answer today, but nothing so far. I hope I get an answer today! I'm ready to go!!
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

User avatar
ginabeewell
Posts: 368
Joined: Wed Oct 24, 2018 10:30 am

Re: 1st bad scanning... advice please!!

Postby ginabeewell » Mon Nov 18, 2019 5:26 pm

Dr Kemeny is actually in Europe until Wednesday; so if they need her seal of approval, you may end up waiting a few more days for it. And I guess if they say no, you can always appeal to her once she’s back!
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

radnyc
Posts: 411
Joined: Tue Apr 06, 2010 6:32 pm

Re: 1st bad scanning... advice please!!

Postby radnyc » Mon Nov 18, 2019 6:21 pm

Please remember that although dr. Kemeny is the go to expert on the HAI protocol, the decision is not automatically hers alone. The whole team over there works on the selection and treatment of all the patients. As a matter of fact when I originally went there I had no idea what HAI was or who Kemeny was. I was there to see a different oncologist. Treatment started and eventually I ended up with the pump. It was explained to me that it would be an effective treatment for me, I agreed and asked few if any questions. Only one time was her name brought up, when my onc wanted to run some of my liver tests by her, she decided to withhold treatment for that one round. I’ve never met her. My point is that one shouldn’t hang all hope on having her as your oncologist and no one else. I’m certain that all their oncologists are ready and able and probably have a much better bedside manner.
Last edited by radnyc on Mon Nov 18, 2019 6:23 pm, edited 1 time in total.
DX Jan '10, at 47
Feb - colon resection - 2/17 nodes
April - liver mets - Stage 4
3 months Folfox chemotherapy
August '10 liver resection and HAI pump
7 months chemo FUDR HAI and Folfiri systemic
NED since August 2010
Last treatment April '11
HAI Pump removed Dec '15

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 18, 2019 6:23 pm

ginabeewell wrote:Dr Kemeny is actually in Europe until Wednesday; so if they need her seal of approval, you may end up waiting a few more days for it. And I guess if they say no, you can always appeal to her once she’s back!


Oh dang!! I really hope they just say yes. But if not, I guess we can do a few rounds of FOLFOX and send them the update after that and they might say yes at that point. It's frustrating to not hear back for so long.

The other annoying thing is that I actually finished translating his medical files before we got home from Mexico, but I only had his pathology report hard copy at home in our apartment in Copenhagen. So as soon as we got back, I translated that last page and sent it off right away. If it had been online like the rest of his medical records I could have sent everything in advance.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 105
Joined: Fri Aug 23, 2019 8:25 am

Re: 1st bad scanning... advice please!!

Postby AlexandraZ » Mon Nov 18, 2019 6:28 pm

radnyc wrote:Please remember that although dr. Kemeny is the go to expert on the HAI protocol, the decision is not automatically hers alone. The whole team over there works on the selection and treatment of all the patients. As a matter of fact when I originally went there I had no idea what HAI was or who Kemeny was. I was there to see a different oncologist. Treatment started and eventually I ended up with the pump. It was explained to me that it would be an effective treatment for me, I agreed and asked few if any questions. Only one time was her name brought up, when my onc wanted to run some of my liver tests by her, she decided to withhold treatment for that one round. I’ve never met her. My point is that one shouldn’t hang all hope on having her as your oncologist and no one else. I’m certain that all their oncologists are ready and able and probably have a much better bedside manner.


Got you, that makes sense. Thanks! I also just want a second opinion in general, and a surgical consultation to find out what is needed. Over here he is automatically disqualified from any surgery because he has lung mets. I know of people who have had liver resections in spite of lung mets, so I'd like to know if they would consider his liver resectable at this point, after a few rounds of chemo. His liver mets are all under 3 cm now and as far as I could tell on his CT scan, the larger ones are close to the surface. Ablation might be a possibility too. Maybe they could do a combine resection of certain segments with wedge resections and ablation, like they did with Ginabeewell. Since all his lung mets are small and he is young and strong, I'm hoping they might consider fixing his liver.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!


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