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Old 12-27-2007, 09:35 AM   #1
SoCalGal
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LA Times - first person - worth reading...

The cancer drug


Cancer opens one's eyes to the many facets of marijuana.

By Diana Wagman

December 22, 2007

Ahh, cancer. One learns so much from being diagnosed with a death-sentence disease. Of course, 95% of it is stuff you would rather not know, but that other 5% is downright interesting. For example, "America's Next Top Model" is much more fun to watch when you've lost 15 pounds without trying. During chemotherapy, vanilla smells good, but vanilla wafers taste disgusting. And eyelashes really do have a purpose; without them, my eyes are a dust magnet.

But the most compelling fact I learned was about my friends. Not just what you would expect: how they cooked for my family and picked up my kids and took me to doctors and pretended not to notice how bad I looked and, most important, that I could not -- cannot -- survive without them.

No, what really shocked me was how many of my old, dear, married, parenting, job-holding friends smoke pot. I am not kidding. People I never expected dropped by to deliver joints and buds and private stash. The DEA could have set a security cam over my front door and made some serious dents in the marijuana trade. The poets and musicians were not a surprise, but lawyers? CEOs? Republicans? Across the ideological spectrum, a lot of my buddies are stoners. Who knew?

OK, I admit it, in college I smoked dope with the rest of them. I mean, everybody was doing it -- an excuse I do not allow my children -- and at parties I didn't want to be uncool. Plus, I felt my only other option was alcohol, and the sweet drinks I liked were too fattening. But that was a long time ago, and since then I have learned to drink bourbon straight, get high on life and appreciate the advantages of not doing anything you wouldn't want your kids to do.

I thought all my friends felt the same. Boy, was I wrong. When I surfaced from my chemo haze enough to care about anyone else, I was curious. Why do so many 40- and 50-somethings still get high? I asked my suppliers. Pain was the No. 1 answer. Not just the psychic angst of being mothers and fathers to teenagers, but real physical pain. We're all beginning to fall apart, and for those who imbibe, a couple of tokes really take the edge off the sciatica, rotator cuff injuries, irritable bowel syndrome and migraines.

The second biggest reason was anxiety. Perhaps we can blame politics for middle-age pot use: the war, the environment, the loss of our civil liberties, little things like that.

Obviously some of us use drugs to ease the lives of quiet desperation we never thought we would have back when we were getting stoned the first time. Our drug use now is really the same as in college. Then I got high to relax, to gain confidence, to forget I was an overweight, mediocre college student terrified of the future. Now we get stoned to relax, forget our disappointing careers and mask our terror of not just our own future but the future for our kids as well. Is it so different from my dad coming home from work and having a couple of martinis? Or my mother and those little prescribed pills she took when she felt "nervous"? At least -- we can rationalize -- marijuana is all natural.

I spoke to my oncologist about the pros and cons of marijuana use for cancer patients. He said he was part of a study 25 years ago on the effects of pot on nausea, joint pain and fatigue caused by chemotherapy. It worked then, he said; it really helped some people. But now they have great new drugs, such as Emend, dexamethasone and Ativan, that keep the nausea and other pain at bay. He said the people who use pot now do it because they like it. Or maybe they use it because they would rather support a farm in Humboldt County than a huge pharmaceutical conglomerate.

After chemo No. 1, I was violently ill. Anti-nausea drugs notwithstanding, I was hugging the porcelain throne. My body did not want to be poisoned; I guess it liked cancer better. I was willing to try anything, so I lit up. It helped. A lot. I collapsed on the couch, I zoned out watching "Project Runway," I was able to take deep breaths without puking.

My 15-year-old daughter was shocked. The look on her face was proof that her elementary school D.A.R.E. program had really done its job. A friend -- not a supplier or a user -- explained to her it was just to make me feel better and that if it worked, wouldn't that be great? My daughter reluctantly agreed, but I knew she didn't mean it. I had come full circle in my life -- the next time I had a toke, I stood in my bathroom with the fan on, blowing smoke out the window, but instead of my parents, I was scared my kids would find out I was smoking dope again.

The biggest pain of cancer is the gnawing, scratching, bleeding dread that they didn't find it all, that you didn't go to the doctor soon enough, that it is growing out of control at this very moment. My doctor recommended meditation. Yeah, right, I thought, more time sitting quietly trying not to think about dying. I had carpool for that. Meanwhile, I lost all taste for alcohol. Even half a glass of wimpy white wine could make me toss my cookies, so I turned to my friend Mary Jane occasionally, only when nothing else would do.

In the middle of one post-chemo night, my husband was out of town and I was sick and I got up and tried to get the little pipe lit and take one hit so I could maybe sleep. My son heard me struggling and he came into my bedroom. He lit the match for me and showed me where to put my finger on the "carburetor," the hole on the side of the pipe, to make it draw. I was too grateful to ask him how he knew all this. He stayed with me until I felt better. It was mother-son bonding in a new way.

Just another reason to say: Thank you, cancer.

Diana Wagman, a professor at Cal State Long Beach, is the author of the novels "Skin Deep," "Spontaneous" and "Bump."

http://www.latimes.com/news/custom/s...la-news-scimed

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1996 cancer WTF?! 1.3 cm lumpectomy Er/Pr neg. Her2+ (20nodes NEGATIVE) did CMF + rads. NED.
2002 recurrence. Bilateral mastectomy w/TFL autologous recon. Then ACx2. Skin lymphatic rash. Taxotere w/Herceptin x4. Herceptin/Xeloda. Finally stops spreading.
2003 - Back to surgery, remove skin mets, and will have surgery one week later when pathology can confirm margins.
‘03 latisimus dorsi flap to remove skin mets. CLEAN MARGINS. Continue single agent Herceptin thru 4/04. NED.
‘04 '05 & 06 tiny recurrences - scar line. surgery to cut out. NED each time.
1/2006 Rads again, to scar line. NED.

3/07 Heartbreaking news - mets! lungs.sternum. Try Tykerb/Xeloda. Tykerb/Carbo/Gemzar. Switch Oncs.
12/07 Herceptin.Tykerb. Markers go stable.
2/8/08 gamma knife 13mm stupid brain met.
3/08 Herceptin/tykerb/avastin/zometa.
3/09 brain NED. Lungs STABLE.
4/09 attack sternum (10 daysPHOTONS.5 days ELECTRONS)
9/09 MARKERS normal!
3/10 PET/CT=manubrium intensely metabolically active but stable. NEDhead.
Wash out 5/10 for tdm1 but 6/10 CT STABLE, PET improving. Markers normal. Brain NED. Resume just Herceptin plus ZOMETA
Dec 2010 Brain NED, lungs/sternum stable. markers normal.
MAR 2011 stop Herceptin/allergy! Go back on Tykerb and switch to Xgeva.
May-Aug 2011 Tykerb Herceptin Xgeva.
Sept 2011 Tykerb, Herceptin, Zometa, Avastin.
April 2012 sketchy drug trial in NYC. 6 weeks later I’m NED!
OCT 2012 PET/CT shows a bunch of freakin’ progression. Back to LA and Herceptin.avastin.zometa.
12/20/12 add in PERJETA!
March 2013 – 5 YEARS POST continue HAPZ
APRIL 2013 - 6 yrs stage 4. "FAILED" PETscan on 4/2/13
May 2013: rePetted - improvement in lungs, left adrenal stable, right 6th rib inactive, (must be PERJETA avastin) sternum and L1 fruckin'worsen. Drop zometa. ADD Xgeva. Doc says get rads consultant for L1 and possible biopsy of L1. I say, no thanks, doc. Lets see what xgeva brings to the table first. It's summer.
June-August 2013HAPX Herceptin Avastin Perjeta xgeva.
Sept - now - on chemo hold for calming tummy we hope. Markers stable for 2 months.
Nov 2013 - Herceptin-Perjeta-Avastin-Xgeva (collageneous colitis, which explains tummy probs, added Entocort)
December '13 BRAIN MRI ned in da head.
Jan 2014: CONTINUING on HAPX…
FEB 2014 PetCT clinical “impression”: 1. newbie nodule - SUV 1.5 right apical nodule, mildly hypermetabolic “suggestive” of worsening neoplastic lesion. 2. moderate worsening of the sternum – SUV 5.6 from 3.8
3. increasing sclerosis & decreasing activity of L1 met “suggests” mild healing. (SUV 9.4 v 12.1 in May ‘13)
4. scattered lung nodules, up to 5mm in size = stable, no increased activity
5. other small scattered sclerotic lesions, one in right iliac and one in thoracic vertebral body similar in appearance to L1 without PET activity and not clearly pathologic
APRIL 2014 - 6 YRS POST GAMMA ZAP, 7 YRS MBC & 18 YEARS FROM ORIGINAL DX!
October 2014: hold avastin, continue HPX
Feb 2015 Cancer you lost. NEDHEAD 7 years post gamma zap miracle, 8 years ST4, +19 yrs original diagnosis.
Continue HPX. Adding back Avastin
Nov 2015 pet/ct is mixed result. L1 SUV is worse. Continue Herceptin/avastin/xgeva. Might revisit Perjeta for L1. Meantime going for rads consult for L1
December 2015 - brain stable. Continue Herceptin, Perjeta, Avastin and xgeva.
Jan 2016: 5 days, 20 grays, Rads to L1 and continue on HAPX. I’m trying to "save" TDM1 for next line. Hope the rads work to quiet L1. Sciatic pain extraordinaire :((
Markers drop post rads.
2/24/16 HAP plus X - markers are down
SCIATIC PAIN DEAL BREAKER.
3/23/16 Laminectomy w/coflex implant L4/5. NO MORE SCIATIC PAIN!!! Healing.
APRIL 2016 - 9 YRS MBC
July 2016 - continue HAP plus Xgeva.
DEC 2016 - PETCT: mets to sternum, lungs, L1 still about the same in size and PET activity. Markers not bad. Not making changes if I don't need to. Herceptin/Perjeta/Avastin/Xgeva
APRIL 2017 10 YEARS MBC
December 2017 - Progression - gonna switch it up
FEB 2018 - Kadcyla 3 cycles ---->progression :(
MAY30th - bronchoscopy, w/foundation1 - her2 enriched
Aug 27, 2018 - start clinical trial ZW25
JAN 2019 - ZW25 seems to be keeping me stable
APRIL 2019 - ONE DOZEN YEARS LIVING METASTATIC
MAY 2019 - progression back on herceptin add xeloda
JUNE 2019 - "6 mos average survival" LMD & CNS new single brain met - one zap during 5 days true beam SBRT to cord met
10/30/19 - stable brain and cord. progression lungs and bones. washing out. applying for ds8201a w nivolumab. hope they take me.
12/27/19 - begin ds8401a w nivolumab. after 2nd cycle nodes melt away. after 3rd cycle chest scan shows Improvement, brain MRI shows improvement, resolved areas & nothing new. switch to plain ENHERTU. after 4th cycle, PETscan shows mostly resolved or improved results. Markers near normal. I'm stunned but grateful.
10/26/20 - June 2021 Tucatinib/xeloda/herceptin - stable ish.
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Old 12-27-2007, 12:30 PM   #2
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RE:
The second biggest reason [for middle aged pot use] was anxiety.

-----------------------------
As an asthmatic, I'll stick to Xanax for anxiety. Cancer is terrifying. If we need antidepressants or anti anxiety meds -- or Pot -- to get through treatment, go for it. Pot is still illegal, though.
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Oncotype DX Score 32
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Lumpectomy 11/04/05 Clear Margins
3 Dose dense AC (Couldn't tolerate 4)
4 Dose dense Taxol & Herc. (Tolerated well)
36 weeks Herceptin (Could not complete one year due to decrease in MUGA score)
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Old 12-27-2007, 08:47 PM   #3
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LOL that was really funny. Not wanting your children to find out you are smoking pot!! LOL
I am for the legalization of it though I have tried it and not liked it--except after chemo, it sure might have helped with problems more than just nausea. Like a renewed sex life.
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Endometrial Cancer 2002
Mammogram 11/2004
Lumpectomy 12/2004
Stage 1, 9mm DCIS, grade 2, Her2+++, ER/PR negative
Refused A/C as recommened by two oncs.
35 treatments of radiation that ended March 4, 2005
Changed oncologists and began
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Old 12-28-2007, 11:22 AM   #4
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Thank you Flori. I have a soon to be 15 year old and had to chuckle at the ironies of life...My favorite expression is "Never say Never". Once again again, Thank you Flori...you make me look into my soul,back into the place I remember from those months on chemo...

Hugs,
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Old 12-28-2007, 11:49 AM   #5
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Flori
You post made me go back in time! My brother from California always tells me to ask the Dr. for Marinol or medical marijuana....I told him I don't need it...or at least not yet! on't they have the marijuana cafes in California for medical use?
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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Old 12-30-2007, 07:49 PM   #6
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Thanks Flori, my 20 year old son offered me some when I was doing adrimacin (the red devil). I almost took him up on it. There have been some studies going on that there is something in the pot that seems to help breast cancer, but you can not get enough of it to help just by smoking it. I think this study is going on in California. Personally I think they should just legalize it.
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Diag 10/2006-high grade invasive ductal carcinoma- mastectomy L breast
2.5 cm tumor ER/PR pos-Her2+++
4 rounds A/C, 4 rounds Taxol
Herceptin every 3 weeks until Jan. 2008
6/18/07 prophylatic mastectomy R breast
8/2007 started aromasin/stopped arimidex (side effects)
12/07 stopped aromasin due to side effects (now what?)
Finished herceptin 1/8/08
started tamoxifen for 2 years then will switch to femera
allergic to tamoxifen started femera 4/2008
June 20, 2008 portacath removed
Learnig to live life to the fullest!
Stopped Femera due to side effects
July 28, 2008 start trial for breast cancer vaccine
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Old 12-31-2007, 03:31 AM   #7
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My son, who is 22 now, started smoking Pot when he was 15. Just a little, to do like the others. Everything was fine in the family. But he got "addicted" very fast. He stopped his studies and was unable to concentrate... I never let go and he is only now starting to climb up the hill again. And he only smoked Pot. This happens to a a small portion of Pot smokers. I ran after the drug dealers, worked with the police, the school the doctors...I saw so many other kids who ruined their lives with Pot. And their families with it. I do not agree to legalizie Pot.
But I do agree using it for pain. It should be used like Morphine. I also had my head in the toilet for hours. Chemo was horrible for me. I lost 25 pounds and was not fat. Plus the rest...The anti nausea pills did not work much. I understand what you went through Flori. If I had known that Pot could have helped me, yes I would have tried. I am sorry I did not know. But under control. Doctors still do not take care of "pain" enough. maybe I could use it now? I'll ask my doctor in the pain center.
Michka
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08.2006 3 cm IDC Stage 2-3, HER2 3+ ER+90% PR 20%
FEC, Taxol+ Herceptin, Mastectomy, Radiation, Herceptin 1 year followed by Tykerb 1 year,Aromasin /Faslodex

12.2010 Mets to liver,Herceptin+Tykerb
03.2011 Liver resection ER+70% PR-
04.2011 Herceptin+Navelbine+750mg Tykerb
06.2011 Liver ned, Met to sternum. Added Zometa 09.2011 Cyberknife for sternum
11.2011 Pet clear. Stop Navelbine, continuing on Hercpetin+Tykerb+Aromasin
02.2012 Mets to lungs, nodes, liver
04.2012 TDM1, Ned in 07.2012
04.2015 Stop TDM1/Kadcyla, still Ned, liver problems
04.2016 Liver mets. Back on Kadcyla
08.2016 Kadcyla stopped working. mets to liver lungs bones
09.2016 Biopsy to liver. no more HER2, still ER+
09.2016 CMF Afinitor/Aromasin/ Xgeva.Met to eye muscle Cyberknife
01.2017 Gemzar/Carboplatin/ Ibrance/Faslodex then Taxotere
02.2017 30 micro mets to brain breathing getting worse and worse
04.2017 Liquid biopsy/CTC indicates HER2 again. Start Herceptin with Halaven
06.2017 all tumors shrunk 60% . more micro mets to brain (1mm mets) no symptoms
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