PET Scan Results - More Cancer???

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Tupelo honey
Posts: 18
Joined: Tue Jul 19, 2016 7:57 pm

Re: PET Scan Results - More Cancer???

Postby Tupelo honey » Fri Jul 07, 2017 10:34 pm

I did take all my rounds of Oxi through the veins as I did not want a port. It did burn for a day or two afterwards each time but is definitely doable.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Sat Jul 08, 2017 6:49 am

That's interesting, Tupulo Honey. I suppose it's a trade off. I just wish we had a way to know how it will work with him ahead of time. Thanks for sharing.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

User avatar
LeonW
Posts: 318
Joined: Sun May 03, 2015 4:59 pm
Location: Amsterdam, Netherlands

Re: PET Scan Results - More Cancer???

Postby LeonW » Sat Jul 08, 2017 6:55 am

Tupelo honey wrote:I did take all my rounds of Oxi through the veins as I did not want a port. It did burn for a day or two afterwards each time but is definitely doable.


ditto: I felt 'patient' only during infusion day. Just sick (but at home :D ) the following 2-3 days. Then better each day and 'on holidays' often leading an almost normal life the final week (of the three week cycle). This third week was enjoyable and gave the strength to take on the next cycle.

These predictable on/off cycles, with only a few 'patient'/sick days carried me thru.

Other:
- I always alternated the arms that were to receive the needles, between whatever the purpose (bloodwork, CT, chemo, clotting checks, etc)
- Once the needle perforated the vein which caused some chemo entering the muscle tissue. The new / different, mildly burning sensation led to the IV being moved to the other arm and application of quite a series of hotpacks. All went back to normal within a day.
- Had reaction to Avastin (extreme pulse/blood pressure) the first time it was added. Infusion rate was reduced, for this and all following Avastin sessions. This made long boring days (8:15 AM - 5:50 PM), with intense chemo reactions mostly when leaving the hospital and the 1 hour drive home. It didn't affect sleep.
- I never used nausea pills

As Tupilo said: definitely doable. Best thing avoiding the patient role
Dec 2012 - Dx CC; MM 65yrs, 2 unresect liver mets, CEA 41.8
Jan 2013 - colectomy @ spleen (IVa T3N1bM1a) 2/26 nodes, MSI-low
Feb-Aug - 1x Xelox-7x Xelox/Avastin, shrinkage from #3
Sept - 2x failed Portal Vein embolization
Oct 2013 - R liver resect 28 hosp days (liver failure, bad delirium, emboli, encephalopathy) pCR; cancer gone
2014/15 - recovery; benign polyp
Apr 2016 - new house/town/life
clean CTs and 1.3/1.4 CEAs: 4x2014, 4x2015/16, 2x2017
next: June 2018 w scopy - 5yr getting close

Jacques
Posts: 408
Joined: Sun Dec 28, 2014 10:38 am

Re: PET Scan Results - More Cancer???

Postby Jacques » Sat Jul 08, 2017 11:22 am

All things considered, I would definitely opt for a chest port. I got a chest port after the 4th cycle, since by that time my veins had become too fragile for access by any IV cannula.
DX(2012): RC
Stage IIc,T4b N0 M0 L0 PN1 H0 D0 P0 I1
LAR
MSI: not tested
Chimio-radiothérapie
Chimiothérapie adjuvante : capécitabine + oxaliplatine
CEA < 1.0,
5 years NED,
End of 6-month follow-ups: 7/2017
----
Info links:
Create Your Signature
How to Select a Surgeon
List of Forum Features
Colorectal Cancer Stages (TNM)

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Sat Jul 08, 2017 2:12 pm

Husband is now leaning towards a port, just to avoid unnecessary pain and b/c there may be a potential need for a port anyway if the burning gets really extreme.

On another note, I have been reading the NCCN guidelines someone linked to me on another thread. This is very interesting and informative given the colonoscopy (and possible polypectomy) husband will be having on Thursday in Boston:

There is controversy as to whether malignant colorectal polyps with a sessile configuration can be successfully treated by endoscopic removal. The literature seems to indicate that endoscopically removed sessile malignant polyps have a significantly greater incidence of adverse outcomes (residual disease, recurrent disease, mortality, and hematogenous metastasis, but not lymph node metastasis) than do pedunculated malignant polyps. However, when one closely looks at the data, configuration by itself is not a significant variable for adverse outcome, and endoscopically removed malignant sessile polyps with grade I or II histology, negative margins, and no lymphovascular invasion can be successfully treated with endoscopic polypectomy.3-7

Thursday will be very interesting!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

User avatar
LPL
Posts: 312
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: PET Scan Results - More Cancer???

Postby LPL » Sat Jul 08, 2017 2:39 pm

mbpser,
My husband has had No problems at all with his port. His has only been used for chemo and not for blood tests - maybe because he uses a local lab for blood tests and they are not comfortable with taking blood from a port?

Jacques,
I'm sorry for using this thread to ask you a question (I can not find a way to contact/send you a message... Maybe you can message me?)
Your Signature says:
"Stage II, T4 N0 M0 L0 PN1 H0 D0 P0 I1"
I do understand the "T4 N0 M0" but what does all the other letters mean? The "L0 PN1 H0 D0 P0 I1".

Kind Regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

User avatar
LPL
Posts: 312
Joined: Fri Apr 22, 2016 12:49 am
Location: Europe

Re: PET Scan Results - More Cancer???

Postby LPL » Fri Jul 14, 2017 3:28 pm

mpbser wrote:
..the colonoscopy (and possible polypectomy) husband will be having on Thursday in Boston. ... Thursday will be very interesting.

I hope everything went well for your DH in Boston.
Kind regards /L
DH @ 65 DX 4/11/16 CC recto-sigmoid junction
Adenocarcenoma pt 35x15x9mm G3(biopsi) G1(surgical)
Mets 3 Liver resectable
T4aN1bM1a Stage IVa 2/9 LN
MSS, KRAS-mut G13D
CEA & CA19-9: 5/18 2.5 78 8/17 1.4 48 2/14/17 1.8 29
4 Folfox 6/15-7/30 (b4 liver surgery) 8 after
CT: 8/8 no change 3/27/17 NED for now :D
:!: Steroid induced hyperglycemia dx after 3chemo .. hospitalized, insulin -> Metformin
Surgeries (open):
3/18 Emergency colostomy 5/23 Primary+gallbl+colostomy reversal (+port) 9/01 Liver mets

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Fri Jul 14, 2017 5:59 pm

Thanks for checking in, LPL.

Hubby's endoscopist was truly amazing. For those in the Boston area, I highly, highly recommend Dr. Aihara http://physiciandirectory.brighamandwom ... opy-boston

He examined the entire colon and noticed that the anastamosis area is inflamed. He said that while this could be due to the ongoing healing process (apparently can take 3-4 months to heal, which is news to me) he biopsied the area anyway, just in case. He tried to lift up the large polyp to remove it by EMR technique but it appears that the growth is too deep into the mucosal layers for this to be done successfully (i.e. would cause perforation if attempted). He suspects that the polyp has malignant cells inside the center and that it has spread to lymph nodes as well. Of course, more biopsies were taken.

We still have an appointment at Mt. Sinai on the 24th but if there is no chance on having this polyp removed by EMR or ESD, then it will be a waste of a trip. On Monday or Tuesday, I will be talking to them to see if we might be able to do the consult via skype or phone. I believe that Dr. Aihara only does EMR, but not ESD, a trickier and more involved procedure. Mt. Sinai's doctor does both, so there is still a possibility worth exploring.

In the meantime, I will reach out to hubby's doctor at Mass General to see what he wants to do about scheduling the 2nd colectomy as it looks near certain that it has to get done. Logistics of having this done in Boston will be difficult but it will all work out, one way or another.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Fri Jul 14, 2017 7:23 pm

Shoot. I just read more about EMR and ESD. Looks like hubby won't be able to have the mass removed non-surgically. It's just too deep for any endoscopic removal techniques :(

This was the article that convinced me: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4843023/
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Sun Jul 16, 2017 8:30 am

We reached out to our Mass General oncologist (Dr. Zhu) [actually emailed his nurse] via email Friday night and received a response yesterday. They will be coordinating with the surgeons to get the colectomy (or another resection, still not sure exactly how much they intend to remove this time) scheduled rather quickly. Since this polyp has all the appearances of being a tumor, husband and I feel that the sooner the better for its removal. Then he can get a move on with chemo.

On a side note, I had my first ever mammogram on Friday. The technician had had breast cancer for which she did chemo. Based on her bad experience with chemo, when she developed uterine cancer, she refused chemo and instead did the Budwig diet and supplements. Apparently, she "birthed" the tumor and has been cancer free for years. She had valuable information about how she treated her chemo-caused neuropathy: CBD oil. It took some time to resolve but it's all gone now. I relayed the conversation to hubby and we are going to include CBD in his treatment now.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Stewsbetty
Posts: 101
Joined: Thu Jul 14, 2016 7:08 am

Re: PET Scan Results - More Cancer???

Postby Stewsbetty » Sun Jul 16, 2017 9:40 pm

mpbser wrote:On a side note, I had my first ever mammogram on Friday. The technician had had breast cancer for which she did chemo. Based on her bad experience with chemo, when she developed uterine cancer, she refused chemo and instead did the Budwig diet and supplements. Apparently, she "birthed" the tumor and has been cancer free for years. She had valuable information about how she treated her chemo-caused neuropathy: CBD oil. It took some time to resolve but it's all gone now. I relayed the conversation to hubby and we are going to include CBD in his treatment now.


I used CBD oil during my chemo treatments (mostly for nausea and better sleep). I still have mild neuropathy in my feet. Maybe taking it regularly (I used as needed) and at higher doses are key but I was concerned with becoming dependent.
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

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Mon Jul 17, 2017 6:31 am

Hi stewberry,

I had the impression that she was taking the CBD post chemo (sounds like she didn't know of it during) for a very long time (number of years) before the neuropathy completely resolved.
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Tupelo honey
Posts: 18
Joined: Tue Jul 19, 2016 7:57 pm

Re: PET Scan Results - More Cancer???

Postby Tupelo honey » Mon Jul 17, 2017 6:46 am

I took glutamine(15-30 grams/day) l-carnitine(1000 -2000mg) , plus oral magnesium (1gram) and calcium (1 gram) the day of chemo (and for 5 days after chemo on the glutamine and l-carnitine). Plus 100 mg B-6 daily throughout. I was able to complete the entire course of chemo with full oxi dose without neuropathy (I always did get the passing cold sensitivity though). I developed very mild neuropathy (numb finger pads and crampy feeling toes) about two months after completion for a couple of months but it did completely resolve.
Last edited by Tupelo honey on Mon Jul 17, 2017 7:35 am, edited 4 times in total.
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED

mpbser
Posts: 313
Joined: Wed Apr 19, 2017 11:52 am

Re: PET Scan Results - More Cancer???

Postby mpbser » Mon Jul 17, 2017 7:27 am

Thanks, t.honey, We will definitely plan on supplementing with those as well!
Wife 4/17 Dx age 45
5/17 - Lap left hemi
Adenocarcinoma
5 x 4 x 1 cm
low grade
T3 N2b M1a
Stage IV A
lymph nodes: 9 of 54
8/17 Sub-total colectomy
2nd tumor 5.5 cm width T1 N0
CEA: 1.4 Pre-op; 2.1 2 days Post-op
MSS/MSI-L
Lynch no; KRAS wild
Immunohistochemsistry: Normal expression of MLH1, MSH2, MSH6, and PMS2
Tumor DNA variants: MTOR, APC, TP53

Tupelo honey
Posts: 18
Joined: Tue Jul 19, 2016 7:57 pm

Re: PET Scan Results - More Cancer???

Postby Tupelo honey » Mon Jul 17, 2017 7:42 am

Just curious: since he is currently post surgical, do you have him on the cimetidine and / or modified citrus pectin to reduce chances of post surgical metasis?
Rectal Cancer Stage 3A 10-22-2015 T2N1M0
Start Chemo radiation 11/2015
LAR TME w/ total hysterectomy 3/14/2016 pT2N1M0 No ileo, straight connect
Start Xelox 4/21/16 1 week on/1 week off
Switch to Xelox 2 weeks on/1 week off 6/1/2016
Supplements: Curcumin, PSK, Celixicob, Cimetidime, Glutamine, L-Acytel Carnitine, Vit D, Vit B6, Vit B12, magnesium, calcium, aspirin, metformin, modified citrus pectin
10/2016 NED
03/2017 NED
07/2017 NED
11/2017 NED


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