Keytruda? What else is new?

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henry123
Posts: 212
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Sun Aug 26, 2018 10:32 am

Stewsbetty wrote:
Yea! Yea! Yea! So excited to hear this. I hope to join you in the future!
Beth


Those on immunotherapy , what else are you doing besides keytruda or opdivo with regards to lifestyle , supplements, diet etc.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

Stewsbetty
Posts: 170
Joined: Thu Jul 14, 2016 7:08 am

Re: Keytruda? What else is new?

Postby Stewsbetty » Thu Aug 30, 2018 5:59 am

henry123 wrote:
Stewsbetty wrote:
Yea! Yea! Yea! So excited to hear this. I hope to join you in the future!
Beth


Those on immunotherapy , what else are you doing besides keytruda or opdivo with regards to lifestyle , supplements, diet etc.


Hi Henry,

I haven’t changed a lot. I quit drinking pop on a regular basis and have added in more variety of fruits and vegetables. I now attend a weekly weight loss group to keep me accountable for maintaining my present healthy weight.
Definitely trying to keep stress levels down but have found my sleep a bit erratic. Think that might not be very healthy for me.
I haven’t added in any supplements because I have very little discipline for taking pills/extras and because of their expense. Putting any extra into healthy, organic fruits and veggies.
I have always been a person of faith but have moved deeper since dx.
I noticed from your signature that you have been juicing and I think it said vegan?

Beth
42yo At diagnosis. Female in BC, Canada
Dx: CC ascending
Right Hemi colectomy 06/16 clear margins
Adenocarcinoma 6cm High Grade
pT3 pN2a Stage 3
10 out of 16 lymph involved
MSI-h, Kras mut, Braf wild
Finished chemo Feb. 2017
PET scan showing active area April 2017
July 2017 CT showing LN mass and spread to other LN
Stage 4
Aug 2017 failed Fofiri
Sept 2017 keytruda scans every 3 months showing shrinkage and stability
November 2018 CT shows only 1 small tumour left
September 2019 clear CT finally NED!!!

User avatar
henry123
Posts: 212
Joined: Sun Oct 08, 2017 3:25 am

Re: Keytruda? What else is new?

Postby henry123 » Tue Sep 04, 2018 10:21 am

Stewsbetty wrote:
henry123 wrote:
Stewsbetty wrote:
Yea! Yea! Yea! So excited to hear this. I hope to join you in the future!
Beth


Those on immunotherapy , what else are you doing besides keytruda or opdivo with regards to lifestyle , supplements, diet etc.


Hi Henry,

I haven’t changed a lot. I quit drinking pop on a regular basis and have added in more variety of fruits and vegetables. I now attend a weekly weight loss group to keep me accountable for maintaining my present healthy weight.
Definitely trying to keep stress levels down but have found my sleep a bit erratic. Think that might not be very healthy for me.
I haven’t added in any supplements because I have very little discipline for taking pills/extras and because of their expense. Putting any extra into healthy, organic fruits and veggies.
I have always been a person of faith but have moved deeper since dx.
I noticed from your signature that you have been juicing and I think it said vegan?

Beth


Beth
I have switched to vegan diet .
I also take 2 to 3 glasses of fresh juice made from carrots, beetroots, pomegranate, greens etc.
For stress , try yoga. Leave everything to god's sweet will .
Take care.
46yo M msi-high Lynch +ve
5/16 lap AR 14/21 L nodes +ve
T4N2M1
7/16 Capox 9 cyc
9/16 cea 2
1/17 550
PET CT mets in lung & peri
iri+ avast fail
3/17 10577
4/17 regro fail
5/17 cea 28800
5/17 CT inc in size of mes nodes ,onset of multi nodules in liver
6/17 Opdivo start
7/17 26754
8/17 5623
9/17 497
10/17 52
11/17 12
CT all clear exc a nodule in Lung. liver norm
1/18 3.6
4/18 2
Aspirin start
6/18 1.5 CT clear
12/18 1.1 NED
6/19 .9 CT clear
1/20 NED Opdivo stop

yvette88_8
Posts: 3
Joined: Mon Jul 20, 2020 6:57 pm

Re: Keytruda? What else is new?

Postby yvette88_8 » Fri Jul 24, 2020 6:29 pm

Stewsbetty wrote:
henry123 wrote:Hi Henry,

Unfortunately, I have KRAS mutation, wondering to know if you have the KRAS mutation or the Wild type, since you have KRAS mutation how long have you been taking Keytruda? Dr. told me that there are no immunotherapy for the CRC with KRAS mutation, just wondering if its really true?


Hello Beth,
Wishing you well. I am sure it will help you and Keytruda will smash the disease away.
Are you getting the treatment in BC only? What sort of costs are there.
Has it been approved in Canada?
Thanks.


Hi Henry, yes I am getting the treatment in BC. It has not been approved in Canada for MSI cancers yet so I had to push my oncologist to get it. It is $8800 per dose if you follow the US FDA approved dose of 200 mg every 3 weeks. I applied for the compassionate care program through Merck and was originally denied. Then my husband’s extended health insurance approved it at 80%. My local hospital found 3 doses left over from a previous patient and gave those to me. After they worked so well the pharmacist resubmitted my application to Merck and I got a call last week saying they would provide the drug free to me. This is such great news! Now there is no longer any financial burden on my family.

So glad for this site and Dr. Tom’s blog that introduced me to the idea of immunotherapy. After failing Folfiri I asked my Dr for a prognosis if the Keytruda didn’t work. She said I probably wouldn’t make it to Christmas. So thankful that i am responding so well on the Keytruda and may now live for years. :)
Beth

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda? What else is new?

Postby boxhill » Sun Jul 26, 2020 9:19 pm

I was on Keytruda from 12/31/19 until around 6/20. Stopped because an MRI finally confirmed that I was NED as shown by multiple CTs. Hoping that my arthalgia will improve. I did nothing to change or add supplements.

My next MRI, assuming that it is approved by insurance, will be 8/11/20. If it continues to be NED, we will proceed from there.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment

yvette88_8
Posts: 3
Joined: Mon Jul 20, 2020 6:57 pm

Re: Keytruda? What else is new?

Postby yvette88_8 » Sun Aug 02, 2020 10:05 am

boxhill wrote:I was on Keytruda from 12/31/19 until around 6/20. Stopped because an MRI finally confirmed that I was NED as shown by multiple CTs. Hoping that my arthalgia will improve. I did nothing to change or add supplements.

My next MRI, assuming that it is approved by insurance, will be 8/11/20. If it continues to be NED, we will proceed from there.

Hi,

That is great news you are NED!. Im so happy for you! Did you go from FOLFOX straight to Keytruda? My mom is using Irinotecan and Avastin, keeps her Cancer stable CEA is 30-33 but Dr. doesnt want to move her on to any other medications. My goal is to have her go to NED, however he doesnt want her to run out of options because he claims there are no immunotherapies that would help her since she has a KRAs Mutation.

I thank you in advance,
Yvette

yvette88_8
Posts: 3
Joined: Mon Jul 20, 2020 6:57 pm

Re: Keytruda? What else is new?

Postby yvette88_8 » Sun Aug 02, 2020 5:08 pm

Maia wrote:Pembrolizumab (Keytruda) and nivolumab (Opdivo) are a type of immunotherapy, both approved some months ago, as monotherapy, for those with CRC whose MS status is MSI-high (about a 10% of the CRC are MSI high). For the majority of the CRC patients, who are MSS, those agents and similar are being tested in combinations --that is: immunotherapy + [something else]. You have a link to a clinical trial finder in my signature line; the finder is curated by Tom Marsilje --DK37 in this forum.

And there are many ablation options and other treatments for the liver. It depends of where you are located, if you can travel, etc.


Hi,
I was wondering Opdivo is FDA approved or is it still on Clinicals?

I thank you in advance

boxhill
Posts: 570
Joined: Fri Apr 06, 2018 11:40 am

Re: Keytruda? What else is new?

Postby boxhill » Tue Aug 04, 2020 3:32 pm

Yvette, as you can see from my sig, I have a KRAS mutation. To my knowledge, KRAS mutations are irrelevant to use of immunotherapies such as Keytruda and Opdivo/Yervoy.

What KRAS mutation does rule out are EFGR-related targeted therapies, such as Erbitux and Vectibix.

You need to find out whether your mother is MSS or MSI, for starters. MSI tumors generally respond better to immunotherapy, although there are *some* MSS that also do so due to particular genetic mutations and/or a higher than usual TMB (tumor mutation burden).

If your mother is an obvious immunotherapy candidate, it doesn't make sense IMHO not to use it. But a) I am not a doctor, and b) I don't know the details of your mother's case.
F, 64 at DX CRC Stage IV
3/17/18 blockage, r hemi
11 of 25 nodes,5 mesentery nodes
5mm liver met out
pT3 pN2b pM1
BRAF wild, KRAS G12D
dMMR, MSI-H
5/18 FOLFOX
7/18 CT NED
11/18 CT NED
12/18 MRI 5mm liver mass, 2 lymph nodes in porta hepatis
12/31/18 Keytruda
6/19 Multiphasic CT LNs normal, Liver stable
6/28/19 Pause Key, predisone for joint pain
7/31/19 Restart Key
9/19 CT stable
Pain: all fails but Celebrex
12/23/19 CT stable
5/19 MRI stable/NED
Suspend treatment


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