No more chemo?

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Vana3
Posts: 28
Joined: Tue Aug 13, 2019 11:40 am
Facebook Username: ma

Re: No more chemo?

Postby Vana3 » Fri Feb 07, 2020 7:14 pm

I just wanted to second Julie (BTW Juliej you rock)
“Stay strong. Be persistent and keep asking questions”

We have been continually shocked by the differences between doctors.... we also are searching for the ones that think outside the box!
36 year old mom of 3 kids (10 year old twins and a 6 month old)
T4aN2M1
5 cm tumor in cecum removed with clear margins
17 out of 45 lymph nodes positive
1 cm omental deposit removed
LVI present
Negative for PC
negative for Lynch
prior to surgery CEA level 5, post surgery 4.2
MSS, KRAS g12d, Braf WT
Mutational burden: 10.9
8/20/19 more scans (CAT, MRI. PET) showed small spots on right lobe of liver, peri aortic LN suspicious
9/04 second round of folfox with Avastin added on 9/18
1/02/20 CEA 3.6

AlexandraZ
Posts: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Sat Feb 08, 2020 5:25 am

juliej wrote:I think there's some truth to this. All those lung mets are probably pumping up his CEA, especially since the liver mets are shrinking.

I also agree that it's a very positive sign that chemo has arrested tumor growth in the liver and even reduced it quite a bit. Those lungs mets are problematic though. However, implanting an HAI pump is not a big surgery. If they could slip one in and then immediately put him back on systemic chemo, it would at least be killing the liver mets.

I had mets in every lobe of my liver. Fortunately, they can do wedge-slices and remove them even when there's a large number, as long as they aren't in a difficult location. Sometimes, even with difficult locations, they can just remove a big section of the liver and it simply grows back (the only organ we have that does so!).

But those lungs.... I fear they will ultimately need laser surgery - unless he is responsive to one of the new immunotherapies. Have you talk to anyone about (CAR) T cell therapy? City of Hope is very experienced in that field. (CAR) T cell therapy involves manipulation of a patient's autologous T cells to specifically hone in on a designated tumor-associated antigen (like little custom-made killer drones attacking his particular cancer!). You might ask about it when you have your consultation at City of Hope.

So, ask Dr. Vogl about laser surgery on the lungs. Ask Dr.Fong about (CAR)T cell therapy. Ask MSK about HAI pump. Ask everyone about immunotherapy trials.

Stay strong. Be perisistent and keep asking questions. Stage 4's like Jesper and me aren't an easy fix. It takes someone willing to think outside the box. Let us know what you find out from the consultations!

xoxo,
Juliej


Thanks so much Juliej! I'm glad we agree about everything. I've been in touch with Dr. Fong as well, and he says he'd be happy to see Jesper. I read about CAR T cell therapy on City of Hope's website and I also thought it sounded very interesting. I will ask more about it. I couldn't find much about its use against solid cancers, but I hope it could be an option!

Thanks for your encouragement Juliej. It's difficult not be a little bit discouraged by our oncologists here at home. I hope we meet some doctors with more hope!!

Big hugs to you!
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: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Sat Feb 08, 2020 5:26 am

Vana3 wrote:I just wanted to second Julie (BTW Juliej you rock)
“Stay strong. Be persistent and keep asking questions”

We have been continually shocked by the differences between doctors.... we also are searching for the ones that think outside the box!


Wow, it gives me hope to hear you say that! I'll definitely share what we find out on our little cancer world tour. Best wishes to you!
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: 392
Joined: Wed Oct 24, 2018 10:30 am

Re: No more chemo?

Postby ginabeewell » Sat Feb 08, 2020 2:27 pm

Vana3 wrote:I just wanted to second Julie (BTW Juliej you rock)
“Stay strong. Be persistent and keep asking questions”

We have been continually shocked by the differences between doctors.... we also are searching for the ones that think outside the box!


If I had worked with one of the first three oncologists I met with, I might be halfway to dead by now. Three of them! And all from major cancer centers! Finding a doctor who can treat Jesper with curative intent might be a challenge but they ARE out there. You’ve done a great job researching and plotting a plan to make sure he has the very best care and the very best shot at beating this.
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

DarknessEmbraced
Posts: 3418
Joined: Sat Nov 01, 2014 4:54 pm
Facebook Username: Riann Fletcher
Location: New Brunswick, Canada

Re: No more chemo?

Postby DarknessEmbraced » Sat Feb 08, 2020 5:26 pm

I'm sorry you re both going through this and I hope all goes well!*hugs*
Diagnosed 10/28/14, age 36
Colon Resection 11/20/14, LAR (no illeo)
Stage 2a colon cancer, T3NOMO
Lymph-vascular invasion undetermined
0/22 lymph nodes
No chemo, no radiation
Clear Colonoscopy 04/29/15
NED 10/20/15
Ischemic Colitis 01/21/16
NED 11/10/16
CT Scan moved up due to high CEA 08/21/17
NED 09/25/17
NED 12/21/18
Clear colonoscopy 09/23/19
Clear 5 year scans 11/21/19- Considered cured! :)

AlexandraZ
Posts: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Sat Feb 08, 2020 5:56 pm

ginabeewell wrote:
If I had worked with one of the first three oncologists I met with, I might be halfway to dead by now. Three of them! And all from major cancer centers! Finding a doctor who can treat Jesper with curative intent might be a challenge but they ARE out there. You’ve done a great job researching and plotting a plan to make sure he has the very best care and the very best shot at beating this.


That's so crazy! I can't believe how many people have said that actually. I have yet to come across someone who had a thousand lung mets, but we're definitely not giving up. There's got to be some combination of treatments that can do the trick somehow. Hope someone at MSK believes in Jesper! It would be amazing to have a doctor who believes Jesper can be cured.
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: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Sun Feb 09, 2020 5:28 pm

I was wondering - do any of you know if ablation precludes any other kind of treatment? As I mentioned, we are driving down to meet with Dr. Vogl but we were just planning on getting his opinion and seeing what he recommends. Now I'm thinking that if he wants to ablate Jesper's liver mets before they grow too big for ablation, maybe it's a good idea to do it right away when we're there already.

In the perfect world I'd prefer to go check everything out and choose the best option. But with Stage 4 cancer, time is not our friend. Many of you have been through more than I have and may know more about this than I do. Do you think it would be a good idea to do the ablation while we are there, if Dr. Vogl recommends it? I'm a little concerned because Jesper's liver mets are about 2.5 cm, so if they grow, they'll quickly become too big to be treated with ablation. Maybe it's a good idea to do it right away?
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!

brokenwings
Posts: 109
Joined: Mon Jan 07, 2019 1:50 am

Re: No more chemo?

Postby brokenwings » Mon Feb 10, 2020 4:46 pm

Hi.

I think the only treatment for the liver that excludes other options is Y90. However, you should wait for an expert to chime in.
How many liver mets does he have?

Hugs.
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
10/31/2019: Hipec + 6 weeks in hospital
12/30/2019: 27mm liver met

AlexandraZ
Posts: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Tue Feb 11, 2020 6:45 am

brokenwings wrote:Hi.

I think the only treatment for the liver that excludes other options is Y90. However, you should wait for an expert to chime in.
How many liver mets does he have?

Hugs.


Thanks for your reply! He has between 10 and 20 liver mets. The biggest ones are about 2.5 cm.
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!

brokenwings
Posts: 109
Joined: Mon Jan 07, 2019 1:50 am

Re: No more chemo?

Postby brokenwings » Tue Feb 11, 2020 12:07 pm

AlexandraZ wrote:
brokenwings wrote:Hi.

I think the only treatment for the liver that excludes other options is Y90. However, you should wait for an expert to chime in.
How many liver mets does he have?

Hugs.


Thanks for your reply! He has between 10 and 20 liver mets. The biggest ones are about 2.5 cm.


I'm not sure they will be able to zap them all at once... I read somewhere that they can do 6 or 7 max in one intervention...
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
10/31/2019: Hipec + 6 weeks in hospital
12/30/2019: 27mm liver met

AlexandraZ
Posts: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Tue Feb 11, 2020 1:33 pm

brokenwings wrote:
I'm not sure they will be able to zap them all at once... I read somewhere that they can do 6 or 7 max in one intervention...


Yeah you're probably right. Well we'll start with the biggest ones in that case and then see what the next step is.
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!

brokenwings
Posts: 109
Joined: Mon Jan 07, 2019 1:50 am

Re: No more chemo?

Postby brokenwings » Tue Feb 11, 2020 2:17 pm

AlexandraZ wrote:
brokenwings wrote:
I'm not sure they will be able to zap them all at once... I read somewhere that they can do 6 or 7 max in one intervention...


Yeah you're probably right. Well we'll start with the biggest ones in that case and then see what the next step is.


Good thinking!
DX 2019 Adenocarcinoma Sigmoid colon. PC + ovarian met.
Obstruction. Temporary colostomy. Primary tumour still there.
Folfirinox: 6 cycles
CT Scan/PET Scan: ok for surgery
Surgery (CRS + HIPEC) 04/29: not optimally resectable, surgery cancelled. Right ovary removed.
2nd ptotocol: IP chemo (oxaliplatin) + IV chemo (Folfiri + Avastin).
10/31/2019: Hipec + 6 weeks in hospital
12/30/2019: 27mm liver met

AlexandraZ
Posts: 163
Joined: Fri Aug 23, 2019 8:25 am

Re: No more chemo?

Postby AlexandraZ » Sat Feb 22, 2020 7:36 am

I'm so upset and confused. We went to see Jesper's oncologist yesterday, and he was ALL doom and gloom. He says he doesn't think FOLFIRI will work this time, since Jesper's CEA kept rising while he was on FOLFOX. He says we are probably looking at chemo resistance and his hopes for any treatment working at this point are very very small. He was willing to give him FOLFIRI but wanted to first hear if Lonsurf would be approved (it's never been approved in Denmark before apparently, due to high cost and low efficiency). He basically said it's super unfair but Jesper's life is going to be very short and he should make sure he hurries up and does the things he wants to do in this life.

WTF??? Jesper has basically no symptoms, no zero pain, and tolerated FOLFIRI pretty well. It shrank his liver mets by about 60%, and during his 2-3 month chemo break in the fall, his mets only grew by 4-7mm. His oncologist said it was a bad sign that they started growing so quickly and is a bad sign for any future treatment. But WTF, Jesper has stage 4 cancer! Wouldn't it be stranger if NOTHING grew? I don't understand the oncologist's thought process at all.

I feel like I recall several people for whom FOLFOX wasn't great, but FOLFIRI worked really well. He hasn't had FOLFIRI since September - wouldn't it make sense to reintroduce it??

(Note: We are STILL waiting to hear from MSK. I've been emailing them and calling them, and yesterday I was finally told they haven't done ANYTHING with his documents yet. The person handling his case didn't even send them to the next person. I sent everything nearly three weeks ago!! Another lady took over now and I re-sent everything to her. At this point it's been so long, though, that I'm not even sure it's a good idea to take the trip and further delay treatment).

I hope someone out there has some wisdom to share with me! I need it badly.
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!

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: No more chemo?

Postby Claudine » Sat Feb 22, 2020 11:48 am

Oh how stressful I’m so sorry Alex! Many folks have posted here about switching oncologist if you’re not happy/disagree with them. What came up from your visit with Dr Vogl? It seems that he was ready to get things going, treatment wise.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule

Claudine
Posts: 267
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: No more chemo?

Postby Claudine » Sat Feb 22, 2020 11:57 am

And yes my husband was one for whom oxaliplatin didn’t work (as xelox not folfox) but who responded very well to Folfiri. He’s on chemo break now to recover from surgery but his onc will get him back on Folfiri if his CEA value is high when he gets checked mid March so I’d think it could be started again for Jesper!
Last edited by Claudine on Sat Feb 22, 2020 12:01 pm, edited 2 times in total.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A
No primary (involuted?)
Lytic tumor L4 vertebrae, EBRT radiation 04/18, SBRT 02/19
Resection small intestine 05/18 (no cancer found - Crohn's)
Failed adjuvant Xelox
Folfiri + Avastin since 03/19
6.7 cm left adrenal mass 03/19, 3.67 cm 12/19, successful resection 02/20
CEA since 03/19: high 58, low 3.2, now 10.2
Scan 03/19: Multiple small lung nodules up to 5mm
Scan 12/19: 2 calcified granulomas, one 1mm stable nodule


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