Who is on your team?

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rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Who is on your team?

Postby rachelfromnyc » Mon Oct 21, 2019 9:43 pm

When I received my diagnosis earlier this year, I consulted with other doctors/practitioners so I can give myself the best chance to beat this thing. I am navigating a stage IV diagnosis. I wanted to get as much info as I can, in particular, all of the different treatment options available even if they are not on the table for me at this time. Here is my team:

1. Medical oncologist & her team at the main hospital where I'm being treated
2. Medical oncologist in private practice
3. Integrative medicine at the main hospital
4. Integrative medicine at a different hospital
5. Functional medicine
6. Nutritionist at the main hospital
7. Nutritionist in private practice
8. Acupuncturist
9. Psychologist
10. Herbalist
11. Alternative medicine

I've also worked for many years with a rheumatologist but that's for a previous autoimmune thing. Some I see more frequently than others. Questions- have I gone overboard? Or did others go the same route, especially at the beginning of their diagnosis? Who did you continue to see as time went on? Any specialty I'm missing? The one I can think of is a naturopath but have had no luck finding. Open to recommendations if you have. Some one in the New York city area as I prefer to do these things in person but open to working with someone remotely also.

Thanks,
Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Who is on your team?

Postby Rock_Robster » Tue Oct 22, 2019 3:19 am

Hi Rachel, I’d say if it works for you, then it’s not overboard!

My alternative med team is a bit more consolidated - I have one naturopath/herbalist and one acupuncturist/TCM. I also have a radiation onc as my primary was rectal.

My main comment would be that I’ve also kept quite close contact with my two surgeons - liver & colorectal. I find they have a lot of useful guidance on my broader treatment and follow up, and often a slightly different perspective to my medical oncologist. I would recommend anyone at stage IV establish a direct relationship with a high-volume surgical specialist, even if they aren’t yet operable. These are the people you ultimately *want* to be meeting, so it’s good to get their advice early on.

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

User avatar
ginabeewell
Posts: 464
Joined: Wed Oct 24, 2018 10:30 am

Re: Who is on your team?

Postby ginabeewell » Tue Oct 22, 2019 8:16 am

Agree with Rob - if it works for you, it’s not overboard!

I did find that my team changed over time. A TCM practitioner was someone I considered vital at the start of my journey and less so over time, especially when I started to carefully look at my labs to see what benefit the herbs drove when I had to go off chemo. (And frankly taking them didn’t make me feel any better; I felt worse)

My core team now:
My home / Northwestern oncologist, Dr Stein
My amazing therapist
My lead / MSK oncologist, Dr Kemeny
My MSK liver surgeon, Dr Kingham
Two acupuncture practitioners who work at the same practice

I try to protect my weekly therapy to the best of my ability. Sometimes I let acupuncture slip, especially when I’m feeling better, but after 2-3 weeks that always catches up with me!

My two oncologists have been highly complementary about what they bring to the table: Kemeny’s expertise and Stein’s personal involvement and how vested she is in me personally. I can text her at any time day or night and she will get back to me. Sometimes I wonder whether I would feel as good as I do about MSK without her compassionate care!
45 YO mom of twins (9) and lucky stepmom of 14/17 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets CEA 931
10/18 FOLFOX + Vectibix
12/18 typhlitis (7 days in hospital) but largest met down to 5 cm.
12/18 CEA 4.6
1/18 Resume chemo (#6-8)
3/19 HAI pump placement / colon resection
4/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/19 CEA 1.3
7/19 liver resection
10/19 liver resection
1/20 NED! CEA 0.6
3/20 two new liver mets; FOLFIRI (5) and then add Vectibix (5)
8/20 CEA 0.7
Resection next?

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Who is on your team?

Postby rachelfromnyc » Tue Oct 22, 2019 4:14 pm

Rob- that's good advice regarding the surgeon. I always thought I had to wait to be referred by the medical oncologist but I suppose there's nothing stopping me from calling the surgeon's office directly for a consult. I'm not a candidate right now but who knows what will happen in the future.

Gina- I'm having a similar experience taking herbs. I don't think there's a big impact based on labs and how I feel so I am rethinking continuing that. I've been taking them while on treatment and I'm sure the chemo drugs are much more powerful than anything the herbalist can prescribe. That's great that you're on text with your doc. I am also at Sloan Kettering and have been happy with their responsiveness to all my phone calls and notes sent through the app.

Thank you both for weighing in.

Rachel
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Who is on your team?

Postby Rock_Robster » Wed Oct 23, 2019 12:50 am

No problem at all Rachel, hope it’s of some use. Out of interest, how do you know you’re inoperable now if you haven’t had a surgical consult?

Cheers
Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Who is on your team?

Postby rachelfromnyc » Wed Oct 23, 2019 10:57 am

Hey Rob, perhaps "inoperable" was the wrong word. When I first found out about the tumor, all I wanted was for it to be cut out. But with the extent of the disease like lymph node involvement, lungs and more recently, stuff in the liver, my doctor doesn't want to take me off chemotherapy for surgery/recovery until disease is stable. My treatment plan is me being on chemo indefinitely and at this point, I'll only have surgery if I'm having major issues like a blockage in the colon. Quite frustrating!
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Who is on your team?

Postby Rock_Robster » Wed Oct 23, 2019 7:03 pm

rachelfromnyc wrote:Hey Rob, perhaps "inoperable" was the wrong word. When I first found out about the tumor, all I wanted was for it to be cut out. But with the extent of the disease like lymph node involvement, lungs and more recently, stuff in the liver, my doctor doesn't want to take me off chemotherapy for surgery/recovery until disease is stable. My treatment plan is me being on chemo indefinitely and at this point, I'll only have surgery if I'm having major issues like a blockage in the colon. Quite frustrating!

Hey Rachel, no worries at all and that makes perfect sense. Indeed operating without first having systemic control can sometimes do more harm than good.

Indeed I still would find it helpful to hear from a surgeon what options could be available in future, and what the conditions for these would be (eg good response to chemo, dealing with other mets first, etc.). If you hit a wall with the ‘innumerable’ lung stuff then some folk have had success with less common therapies (like YAG laser) that you may want to investigate. Getting the sequencing right is a tricky one too - eg sometimes liver surgeons don’t want to operate in the presence of extrahepatic disease, but taking time off chemo to deal with the lungs may be detrimental to the liver. Unfortunately it’s sometimes also the case that docs/surgeons only offer solutions that they can actually do, so sometimes the research falls to us to do! MSK are about as good as any one hospital gets, but of course there’s not quite such a thing as a one-stop-shop yet.

Best of luck,
Rob
Last edited by Rock_Robster on Wed Oct 23, 2019 7:15 pm, edited 1 time in total.
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Who is on your team?

Postby Rock_Robster » Wed Oct 23, 2019 7:10 pm

Just one other comment on the “team” thing (because you asked and I have time :-)), I definitely found my needs changed over time. As stage IV patients we will often be resource-constrained - time, money, energy - and you need to prioritise these as works best for you. At first I was seeing everyone on an almost weekly basis, and I found I was doing nothing but ‘treatment stuff’ and had no time for fun or a life. Also these folk will usually gladly take your money, and it’s up to you to decide what level of engagement is helpful.

So... after a couple of consults with the dietician, I found I didn’t need to see them regularly/again. Once the naturopath and herbalist gave me their plan/advice, I also didn’t need to do her “check-in’s” (at $150 each) unless something really changed in my plan, and could order supplements online. My ideal frequency to see the psychologist is once or twice a month, and only when I have energy (ie not in a chemo week). But acupuncture/massage I seem to get a LOT of benefit from, so I make an effort to do this weekly regardless.

This all left more a lot more time and money to see my friends, go to the gym, do some work, go on holidays and generally be happy - which I think is as important to your healing as almost anything else.

You’ll find the balance that works for you, but don’t be afraid to sometimes recognise that ‘less is more’.

Rob
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

boxhill
Posts: 608
Joined: Fri Apr 06, 2018 11:40 am

Re: Who is on your team?

Postby boxhill » Wed Oct 23, 2019 9:35 pm

I'm also Stage 4, and my "team"--meaning people I see on an ongoing basis-- is my oncologist and his staff. I also have a PCP whom I adore, and she takes care of everything else. I've recently seen two ortho people regarding my Keytruda-related joint pain, but I don't regard them as team members, although they might become that.
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 and 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
Stop Key
8/20 MRI NED

Siti
Posts: 177
Joined: Thu Aug 01, 2019 10:58 am

Re: Who is on your team?

Postby Siti » Thu Oct 24, 2019 4:01 am

Hi Rachel,

Sorry to hear about your diagnosis. It looks like you’re well armed to combat this disease and your fighting spirit would definitely help you through this.

My husband is Stage 4 because PET scan shows activity on a few distant lymph nodes, neck included like yours. We were initially very unhappy with the attitude of the first hospital in the Netherlands which refused to operate on my husband and pretty much said chemo for life. So went to Singapore for private healthcare and now back in Netherlands at another hospital. We changed 3 hospitals in total refusing to give up!

1. We consulted 4x medical oncologists (2 in Netherlands, 1 in Belgium and 1 in Singapore). Now we’re consulting only 1, who’s a research professor + medical oncologist in Amsterdam.

2. Colorectal Surgeon (Singapore) he operated on my husband with success via laparoscopy.

3. Psychologist, we’re also enrolled in the CALM study led by a Canadian team. We only saw her twice but planning to do so once a month.

4. Dietitian, only consulted once. Didn’t really help much to be honest. I would have much preferred full time consult because my husband’s needs changes every week. Sometimes he has diarrhoea, sometimes loss of appetite, sometimes sensitivity to cold. His diet changes according to treatment schedule but overall I try to provide him with nutritions food because vitamins have been discouraged during chemo by our oncologist.

5. Acupuncturist, he sees her once every 3 weeks. My husband was a non believer but now a convert as it helped tremendously with the tingling / pain in his hands and feet.

I was looking for complementary / alternative medicine therapy initially but stopped because based on experience, his side effects vary at such great degree, I don’t know what’s causing what. He was admitted to hospital with severe cramps on his first infusion, till today, we’re not sure what was the cause. So we have decided to focus one the main treatment so that the doctors can guide us accordingly.

Finally — I do agree with the rest about just following what works for you. But as a tip, I think having too many options can be stressful and overwhelming. My husband and I found a lot of comfort after finally settling on one option. The other thing that you should include in your team is family and friends. They play such an important role not only in support but also helping you forget about the disease (at least for that moment) and live life like it used to be before diagnosis.

Do share your journey with us so that we can all compare notes and help each other the best we can :)

Take care,
Siti
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

Siti
Posts: 177
Joined: Thu Aug 01, 2019 10:58 am

Re: Who is on your team?

Postby Siti » Thu Oct 24, 2019 4:16 am

Just out of curiosity, what’s the difference between:

Integrative medicine, functional medicine, herbalist and alternative medicine on your list? Do they overlap?

What supplements/ herbs are you taking while on chemo?

We’re tempted to consult this Center in London if chemo isn’t working as it should (https://careoncologyclinic.com/).
Wife of DH (54) DX on 5/7/19
Sigmoid | Adenocarcinoma | Grade: G3 | LNs: 30/31
Wild Type for KRAS, NRAS and BRAF
19/7/19 PET-CT Scan: Distant lymph nodes (para-aorta, neck & hip), est. size 0.5-1.5cm.
22/7/19 Surgery: Laparoscopic Colon Resection
26/8/19 Chemo: CAPEOX + Avastin x 7
6/11/19 CT Scan after 3rd cycle, all nodes have shrunk! Yay!! 20/12/19 Last round of Ox (NED)
1/2020 Maintenance: Cap + Avastin
4/2020 Maintenance: switch to Teysuno (S-1) + Avastin due to bad HFS side effects.

rachelfromnyc
Posts: 57
Joined: Fri Oct 04, 2019 11:32 am

Re: Who is on your team?

Postby rachelfromnyc » Thu Oct 24, 2019 11:17 pm

Rob- Thank you again for the response, you’ve given me good things to think about for the future. I also think my team needs are starting to change and completely agree about doing so many treatment related things. I feel everything I do is related to cancer and it’s driving me crazy. Did you continue to work when you were first diagnosed? I am currently on an indefinite leave with no pressure to return but maybe I need to set a goal for myself to come back within some timeframe.

Boxhill- thanks for your input, I am missing a PCP. I rarely went to the doctor before being diagnosed therefore never established that relationship but it’s an important one moving forward.

Siti- lots of info, thank you for putting all that together. Being told chemo for life and no surgery has been hard for me, so I appreciate your story that through persistence, your husband was able to get the operation.
The two integrative doctors I saw were at major hospitals (Sloan Kettering and Weill-Cornell) and I found them to be conservative and a bit inflexible. The functional medicine doctor has her own practice and is open to doing things in parallel with chemo. I get IV vitamins that support me during treatments. In the beginning, she did a complete work up which we repeat every three months. So things like inflammation markers, cholesterol profile, amino acid profile, thyroid, hormones, microbiome stuff, etc. I guess I would describe it as she’s treating the cancer indirectly, by treating everything else.

The alternative medicine doctor was a name I kept coming across in articles and books so I was interested to meet him. We went through everything out there in terms of cancer treatment, stuff that’s done in other countries, etc. I think I will need him at some point but not right now.

Supplementation has been tricky. I’ve done my own research and consulted with doctors and other health practitioners. There’s an equal amount of for/against arguments, anti-oxidants in particular, and I’ve had to make my own decisions. To answer your question, I take probiotics, digestive enzymes with meals, coriolous versicolor mushrooms, vitamin D3, cimetidine, curcumin, CoQ10, resveratrol, artemisinin, green tea extract, silymarin, berberine, fish oil and melatonin. I found out about the Care Oncology Clinic via Jane McClelland’s book but also have not taken action.
And finally, yes! Friends and family are the most important. There are many Team Rachel supporters out there and I’m so very lucky.
Dx May '19, one month after 37th bday
5/19: 3.4 cm tumor in transverse colon, distant lymph nodes, innumerable lung nodules
Moderately differentiated invasive adenocarcinoma
MSS, TMB 7.9, BRAF/KRAS wild
6/19 - 9/19: Folfox
10/19 - 2 new tumors in liver, switch to Folfiri w/ Avastin
3/20 - liver tumors no longer seen, primary tumor 0.9 cm, continue Folfiri w/ Avastin

Rock_Robster
Posts: 517
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Who is on your team?

Postby Rock_Robster » Fri Oct 25, 2019 1:07 am

Hi Rachel, I was living and working overseas for an international company when I was diagnosed, and we moved back to my home country (Australia) for treatment. My job isn’t very amenable to intermittent work (and also has a heavy travel load), so the company doc and I agreed it would be best that I go on leave - which I’ve now been on for almost a year (paid, thankfully!). Of course this left me with a lot more spare time - cancer treatment is at least a part-time job, but I’ve definitely had to consciously work to fill my time with things that aren’t cancer-related when I have the energy. I find health and social things the best for me, and also have got into a few old/new hobbies, some study and domestic travel (haven’t got back an international flight yet on doctor’s orders!). I do really miss work though and think that going back will help me feel more “normal” again, even if it’s while I’m still on my cancer journey. If this next surgery goes well, hopefully in the new year :D

PS: I also entirely agree with boxhill - my PCP has literally saved my life twice during this process where my onc and surgeon missed dropped the ball...
38M Australia
10/2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1
11/18 FOLFOX x6
3/19 Liver resect
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resect
02/20 Ileo reversed
03/20 NED (PET+MRI)
06/20 NED (CT+MRI)
07/20 Clear scope
09/20 NED (PET)

NHMike
Posts: 2498
Joined: Fri Jul 21, 2017 3:43 am

Re: Who is on your team?

Postby NHMike » Fri Oct 25, 2019 10:25 am

My team:

Radiation Oncologist at local radiation clinic
Oncologist at local clinic (it's really a hospital but they're not allowed to call it that)
Surgeon at Brigham and Women's in Boston (50 miles away)

Radiation Oncologist at Dana Farber for second opinion before treatment started, haven't seen him since.
Oncologist at Dana Farber for second opinion; he became my primary oncologist after the end of Adjuvant Chemo

-----
So basically my team has been two or three doctors depending on the stage of treatment.

BTW, I consider all of you as part of my team.
6/17: ER rectal bleeding; Colonoscopy
7/17: 3B rectal. T3N1bM0. 5.2 4.5 4.3 cm. Lymphs: 6 x 4 mm, 8 x 6, 5 x 5
7/17-9/17: Xeloda radiation
7/5: CEA 2.7; 8/16: 1.9; 11/30: 0.6; 12/20 1.4; 1/10 1.8; 1/31 2.2; 2/28 2.6; 4/10 2.8; 5/1 2.8; 5/29 3.2; 7/13 4.5; 8/9 2.8, 2/12 1.2
MSS, KRAS G12D
10/17: 2.7 2.2 1.6 cm (-90%). Lymphs: 3 x 3 mm (-62.5%), 4 x 3 (-75%), 5 x 3 (-40%). 5.1 CM from AV
10/17: LAR, Temp Ileostomy, Path Complete Response
CapeOx (8) 12/17-6/18
7/18: Reversal, Port Removal
2/19: Clean CT

rp1954
Posts: 1536
Joined: Mon Jun 13, 2011 1:13 am

Re: Who is on your team?

Postby rp1954 » Fri Oct 25, 2019 2:34 pm

rachelfromnyc wrote:...The functional medicine doctor has her own practice and is open to doing things in parallel with chemo. I get IV vitamins that support me during treatments. In the beginning, she did a complete work up which we repeat every three months. So things like inflammation markers, cholesterol profile, amino acid profile, thyroid, hormones, microbiome stuff, etc. I guess I would describe it as she’s treating the cancer indirectly, by treating everything else.

You might want to share more about your basic parameters (MSS/dMMR, Kras type, differentiation if solid or liquid biopsied) and any/all early (pre-treatment) blood work mentioned above, to try to match with other people's profiles for discussion.

Supplementation has been tricky. ... I take probiotics, digestive enzymes with meals, coriolous versicolor mushrooms, vitamin D3, cimetidine, curcumin, CoQ10, resveratrol, artemisinin, green tea extract, silymarin, berberine, fish oil and melatonin.

What doses including the IVs, and what affected your dose decision(s) the most? I'm a little quizzical about your formulation here for Folfiri.

It is possible to multimodally to carve ones way to success (chemo/treatment-surgical cycles). It is very difficult to overcome medical hesistancy and limitations with even the best talent (regional/global) for the specific surgery, and requires good integration (DIY for us to collect the pieces). The integration and talent parts are tough. You need a good/great specifically experienced surgeon that flexs to get past the multi site objection ("inoperable" and chemo time off) and then an actual met control chemistry plan than goes closer to surgery. Most multimodal papers I've seen have been from the acme of a country/region to get the basic cycle going, the integrated stuff is extra.

We actually did not stop (immuno)chemo much before (hours) and after (24 hours) surgery for para-aortic lymph nodes but we achieved an unusual situation where my wife was well optimized for mild chemo and wound recovery. The biggest technical issues are really stopping the mets from spreading (e.g. like during chemo weeks off and perioperative gaps - we basically removed the chemo gaps, down to hours), maintaining good/great body vitals and parameters, matching chemo type and reducing the gap for a particular surgery's risks and bleeds, and getting fast surgical recovery to go back on (mild but active) chemo.
Last edited by rp1954 on Fri Oct 25, 2019 3:12 pm, edited 4 times in total.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C


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