Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

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beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby beach sunrise » Sat Jun 19, 2021 5:53 pm

No experience. Your bloodwork may give you a sign. Like some of the ones rp1954 talks about LDH 1-5, ca19-9 ect.
AND, if they are really suspecting mets then I would DEMAND xeloda NOW as part of ADAPT+ celebrex+supplements+IVM or azole protocol because 12 wks is so long. It could make a big difference in my opinion.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby Claudine » Sun Jun 20, 2021 9:54 am

Unfortunately, if it’s like my husband, a ton popped up pretty fast and in both lungs. By « pretty fast » I mean there were none in May, they were clearly visible the following March but they were already present on the December PET, just too small to really « light up ». So, about 7 months.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby Claudine » Sun Jun 20, 2021 9:59 am

BUT they’ve been dead/gone for over two years now!
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby Claudine » Mon Jun 21, 2021 8:51 am

Apologies for asking this if you posted it previously, paryingforccr, but I am wondering if there’s a specific reason for waiting until August for the next scan? Was it suggested by the oncologist because lung mets are typically slow growing? Was it insurance based? Or to give time for the Tippens protocol to be effective?
Very understandably, the situation seems to be causing you an incredible amount of stress and I’m wondering if it would be better for you if the scan was moved to July, for example. Waiting can be so hard.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby rp1954 » Mon Jun 21, 2021 9:14 am

prayingforccr wrote: Is it odd/rare to go from ZERO to NINE small (3-5mm) lung nodules, in all lobes, within 6 months?

There have been apparent similar examples both ways here, from false alarm or successful alt immunochemistry tx, to bad news.

Do you not like the Tippens Protocol for a specific reason?

I haven't seen any useful CRC experience with Tippens either here, other CRC forums or literature specific to CRC. Not that I've done much beyond looking at his site. Each type of cancer has differences, so we have no idea about Tippens. Total roll of the dice whether it does anything. Especially if you don't have a monitoring program that shows improvements or problems brewing.

I’m taking fenbendazole dissolved in dmso/curcumin/full spectrum cbd oil/resveratrol/vitamin d3/vitamin b complex/turkey tail mushrooms/dha each day.

Everything revolves around whether you have artifacts or active mets or not on the CT.
If you are NED, well then you have some chemistry to try to stay free.
If you have active mets then I would be concerned about lack of 5FU, heavier chemistry, and a better monitoring series.
Last edited by rp1954 on Mon Jun 21, 2021 9:21 am, edited 3 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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

wildcards

Postby rp1954 » Mon Jun 21, 2021 6:51 pm

The time to fight cancer is now, with whatever chemistry/tx packages you choose.

The last minute saves are increasingly difficult, and rare, albeit a little bit more common here.
Two specific last chance examples are the keytruda examples for specific biology, and Sleen's TIL trial for the 1%.
For us, it was chipping away asap at a Big Rock with cumulative chemistry, tests, and surgery, despite some slippage and interference, with some notable good progress events, without the usual side effects.

I am not clear where you are at on (mega)vitamins. Earlier you mentioned the E tocotrienol/tocopherol complex but not now?
What exactly are you doing with D3 and B complex, IU and mg by Mg?
I consider these all active substances but it's hard to know if you're on target with **enough** working chemistry, without enough blood data visibly bending to your favor over time.

One of the immuno phenomena you should be aware of, discussed by our "megavitamin D3" endocrinologist, is that mets could even seem to swell on the CT, right before they dissolve because the immune stuff would build up before/during release on the outside of cancer masses. Drama and tension. My wife had unbiopsied liver lesions where this appeared to happen and one of my conventional drs saw them dissolve on the successive CT scans. Totally.blown.away.

At first the extra blood tests and anti-inflammation work may seem to add to the stress and strain (work), but when they start to bend in your favor one or two at a time and improve over time, that's the big relief/reassurance. When you drift off target, they can noticeably deteriorate and it's a scramble to (re)intensify the (new) chemistry enough and drive the blood panels back to new improved levels, but with that comes some feeling of control if you can do it.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

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beach sunrise
Posts: 1027
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Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby beach sunrise » Mon Jun 21, 2021 10:28 pm

A story: If you consider high dose vitD3 therapy, get support for it as rp says. I read about it then tried it on my own, big mistake. Phosphorous level was to high. Had to back off and start over. About 2mths lost there and had to scramble to convince one of my dr's to research it and help me out. He did thank God and now my level is up there and climbing with a watchful experienced eye on bloodwork. He even gave me a booster shot of D3 in the booty which I was not a fan of but it did help my levels increase without raising phosphorous or unbalancing cal:mg ratio.
I had some lymph nodes that were enlarged (not lighting up) 6 mths ago. Scared the s*** out of me but they have resolved to normal at last scan. I think vitD3 is worth investigating along with other things mentioned. It is needed in all cellular health functions of the body. And low cost therapy as well.
Like you, I am in the grey area of stage III or possibly IV depending on the variables you look at. In my case, I hammer everything I know about and then some hoping to stay stable stage III on scans and keep working towards favorable bloodwork levels.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby beach sunrise » Tue Jun 22, 2021 12:43 pm

What's your current D level?
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby rp1954 » Thu Jun 24, 2021 6:12 pm

prayingforccr wrote:I am taking vitamin d3.
Life extension 125mcg 5000 icu.

You might want to check your blood levels of 25 hydroxy vitamin D. A lot of colorectals are deficient without special effort, even grossly deficient, often requiring 10,000+ iu per day to simply normalize their levels into the low 30s ng/mL (30 ng/mL = 75 nmol/L) after loading doses and months of a new higher maintenance level. My wife was one of these. The most I've seen claimed for *simple normalization* was ca 20,000 iu per day.

One might arbitrarily consider there to be two megavitamin D blood level regimes for discussion, say 50-100 ng/mL, and over 100 ng/mL. Some might say 125 or 150 ng/mL for the upper threshold value. My wife spent years on vitamin D3 in the 20,000 - 50,000 iu daily intake range. We conferenced our internal medicine MD with an endocrinologist clinically researching high therapeutic levels of vitamin D3 for diabetes and cancer (His regimen removed calcium supplements, added magnesium and MK4, monitor blood, some panels frequently).
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby rp1954 » Fri Jun 25, 2021 1:41 pm

prayingforccr wrote:Is going from ZERO to NINE lung mets unusual in 6 months time, with no other signs of cancer?
Can no one answer this question?

Well, here's a somewhat similar story with 22 lung lesions popping up fast, and a happy ending - but still some ambiguity on whether they were artifacts or not.

My feeling is if they are mets, and there are nine of them in such a short period of time, that I’m a goner.

There have been worse cases saved but definitely skill, determination and luck are factors. Excess caution kills too.
To a degree, fast moving mets theoretically can be easier poison but what that poison is, can be the (multi)million $$ question. BRAF over KRAS would be current counterexample - BRAF variants are apparently faster *and* tougher with known chemistry and alternatives. Vs fast mets that bite the dust, or stabilize, on mild generic combinations.

Other than Claudette, whose husband was stage iv at the time, are nine mets in one shot unusual, or more often would people get 2, then 3, then 5, then 7.........?
"zero" to nine is highish, if really mets, might tend to imply a cryptic met or unknown primary seeding things between scans. An untreated met or a chemo failure might see that explosive growth.
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

Claudine
Posts: 808
Joined: Tue Mar 12, 2019 2:41 pm
Location: Montana

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby Claudine » Fri Jun 25, 2021 2:56 pm

An untreated met or a chemo failure might see that explosive growth.


Yep that was the case for my husband; he finished adjuvant chemo in October, and in December had a large adrenal met and the small nodules. Either all those developed really fast after he finished Xelox, or (I suspect) they started growing while he was on it.
Wife of Dx 04/18 (51 yo). MSS, KRAS G12A, no primary

Tumors: L4 04/18; left adrenal gland & small lung nodules 03/19
rectum 02/22 (pT3 pN0 stage 2A); L3 09/22

Surgeries: intestinal resect. 05/18 (no cancer - Crohn's); adrenalectomy 02/20
L3-L4-L5 fusion and corpectomy 05/20; LAR 04/22; ileo reversal 09/22
L2-L3 fusion and corpectomy 09/22

Treatments: EBRT 04/18; SBRT 02/19; Failed adjuvant Xelox ; Folfiri/Avastin 03/19 - 01/20
adjuvant chemorad (Xeloda) 06/22; SBRT 11/22; Lonsurf/Avastin 12/23

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby beach sunrise » Fri Jun 25, 2021 5:33 pm

Folfox fails alot but hopefully not for you.
Will your onc not give you a straight answer?
My onc never would give a straight answer and quit frankly ignored me a few times as did his nurse when questioning treatment. I stopped at 7 rounds when he suggested 12 or go home, see you in 6 months. That was the last time I laid eyes on him. Scary stuff right there.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

User avatar
beach sunrise
Posts: 1027
Joined: Thu Mar 05, 2020 7:14 pm

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby beach sunrise » Fri Jun 25, 2021 6:08 pm

Search Linda Loma or Loma Linda (I can't never remember which name it is) for lung met(s) treatment. I have thought about sending them my scans to look at the 3mm lymph node in my lung that has been there since dx. To me, it could very well be a met just not growing or lighting up yet.
NO ONE will be more concerned than you.
It is scary, I understand completely where you are coming from.
Never mind about Lomalinda, found out their treatment isn't for crc :(
Last edited by beach sunrise on Sat Jun 26, 2021 4:29 pm, edited 1 time in total.
8/19 RC CEA 82.6 T3N0M0
5FU/rad 6 wk
IVC 75g 1 1/2 wks before surgery. Continue 2x a week
Surg 1/20 -margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24 post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
CEA
7/20 11.1 8.8
8/20 7.8
9/20 8.8, 9, 8.6
10/20 8.1
11/20 8s
12/20 8s-9s
ADAPT++++ chrono
CEA
10/23/22 26.x
12/23/22 22.x
2023
1/5 17.1
1/20 15.9
3/30 14.9
6/12 13.3
8/1 2.1
Nodule RML SUV 1.3 5mm
Rolles 3 of 4 lung nodules cancer
KRAS
Chem-sens test failed Not enough ca cells to test

rp1954
Posts: 1849
Joined: Mon Jun 13, 2011 1:13 am

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby rp1954 » Fri Jun 25, 2021 6:34 pm

prayingforccr wrote:So I sit, wait, fret, and panic.
I won’t do any treatment that is deemed palliative.
I would do chemo/surgery/immunotherapy if it was curative.

You ask for too many definitive answers in a gray world where real answers take work and time - are slow, and error prone.
But (low cost, high QoL) continuous improvement on continuous chemistry was the foundation stone for us bridging bad possibilities with conflicted information. Eventually palliative became curative.

We decided to do many treatments additively that were an incremental improvement at low body burden (or observable side benefit) asap, not stopping the addition process for several years. I'm talking more than Baskin Robbins' 31 flavors - potent on some basis - measured preferred, or high(est) impact low toxicity dose in the literature, with predictive markers preferred. The high safe doses and protocols can be shocking to the unread, uninformed e.g. vitamin C and D, where people often think they know something but that "knowledge" is totally ahistorical.

Some were run on an incremental design-to-poison basis - early on my wife's lung thingies got a Gorgon treatment for much of the first year, and one turned to stone (high calcium level with chronomodulated 5FU and everything else) and one disappeared.
Were they cancer? dunno but they were dead or dissolved.

The advantages that we had were data not getting nuked on blood work the way rectals are (1.5 inch miss, whew), higher dose nutraceuticals, and starting early on expanded blood data series, cumulatively increasing active biochemical components, and cumulatively improving the expanded blood tests. So the first year, we took a lot of 2-3 week blood data (remember not nuked); radiation and cyclical chemo make blood work more noisey and difficult.

What was your average MCV before you started radiation, the average MCV before chemo (it's in your CBC blood data), and what were the two highest MCVs while on chemo, and now?
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 chemo to almost nothing mid 2018, IV C-->2021. Now supplements

utahgal7
Posts: 199
Joined: Fri Sep 11, 2020 12:04 pm

Re: Unusual To Go From Zero To Nine Lung Nodules In 6 Months?

Postby utahgal7 » Sat Jun 26, 2021 11:22 am

I just wanted to add another comment about bloodwork. What was your platelet count? Based on my research, a high platelet count CAN be indicative of metastasis, not always though.

I don't want to be a Debbie Downer but I have NOT read of a single case of rectal cancer responding to the Joe Tippens protocol. Now that doesn't mean that the protocol can't work or won't work, I just haven't read anything about its success in rectal cancer. I would want FOLFIRI/Avastin now!
02/20 Rectal Cancer dx - 4 cm mass; located 9 cm from AV
03/20 CEA 2.7; 0.9; 1.4; 0.9; 0.9; 1.2; 1.0; 0.8; 1.1; 1.0; 1.1; 1.7; 1.8; 1.8
1.9; 2.4; 2.3; 2.8; 2.2, 2.8, 3.2; 3.0; 1.6; 2.0; 1.2
04/20 ST Radiation; 04/20 LAR surgery w/ileostomy; ypT3N1bM0; MSS, KRAS G12A
05/20 CAPEOX; 08/20 Ileostomy reversal
12/20 CT scan; lung nodules (watch and wait);
11/22 lung nodule biopsy positive for RC met;
1/23 VATS right lower lobe wedge resection
FOLFIRI 10 cycles


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