Topic: Good News/ What's Working

I received my first report on tumor markers after one month (two rounds) of chemotherapy (Oxaliplatin/Xeloda/Gemzar).  I'm not entirely certain of a complete and accurate interpretation, butin February  I had a Carcino-embryonic ag reading over 5 which dropped slightly to under 5 ng/ml in March.   In February my CA 19-9 reading  was above 3000, which dropped by over 2/3  to under 1300 Units/ml in March.  I know both are way above well patient norms but both are in fact significantly lower than earlier.

  I just wonder if this will be significant enough to start shrinking this bleeping thing to the point where the surgeon will consider excision. 

What's really confusing is that the Cancer Center professionals seem almost deliberately contradictory in their statements about treatment plans:  The oncologist hints at the possibility on shrinkage to the point of being within surgical margins--while his main nurse says that once the surgeon has turned you down we keep you in chemotherapy permanently with no possibility of surgery ever.  The next time I see them together perhaps I can get a better answer.

Re: Good News/ What's Working

Jack,

There are many people on this website who have started chemo, had their tumors shrink, and have then become a resectable case.  I would say your chances of this are certainly possible.  It probably will not happen in the first few months, but over time if you respond to the drugs you can very possibly show some shrinkage.

Best of luck to you!

Rick

Ulcerative Colitis 1990, Stage 0 colon cancer and subsequent colectomy with J-pouch in 7/2005, PSC 7/2005, Klatsin CCA 8/2009

Re: Good News/ What's Working

Hello Jack and yes we have had quite a few CC patients on this site who have had their tumors shrink and then had surgery. If you ever have any doubts don't forget you have the right to another opinion. Can't understand the nurse telling you that. Please stay hopeful and thank goodness your doctor is more optimistic than his nurse. Also please keep us posted.  By the way, that is great news about your counts lowering!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News/ What's Working

Thanks for the kind feedback.  I saw the nurse yesterday, and summoned up the assertiveness to ask her if she meant what she said or if in fact what I thought I heard was different from what she meant to say.   She clarified that she did not mean to rule out surgery.  "Every patient is different."   

Thanks for being positive and supportive.  There will come a time again, I hope, when I'll be better able to be more supportive to others as are you.

Re: Good News/ What's Working

Ooooof!!  The nurse's initial comments must have knocked the wind out of you, Jack!!  I'm glad you were able to get her to rethink her statement & clarify her meaning.

My very best to you.

Julia

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Good News/ What's Working

Lainy--you were certainly right in every way.  An update from my oncologist last week indicated that both tumor markers are continuing to fall, and the tumor may have shrunken by 15-20% in size according to MRI and CT scans.  I was referred to an interventional radiology group, and they're now considering radioembolization or chemoembolization as procedural  alternatives just in case the current chemo regimen begins to falter.

The oncologist seems to be getting more confident about surgery to remove the remaining tumor completely--although he stresses that everything depends on the continuing response to the current chemotherapy regimen.  If that succeeds, then the next move might be direct to surgery.  If not, then most likely the next step is radioembolozation followed by possible referral to surgery.

I think, given my circumstances, I have been given the most hopeful news imaginable.  Your encouragement and shared history about other patients was entirely accurate, appropriate, and very much appreciated.  Thank you and Praise God!

Re: Good News/ What's Working

Dear KY JACK, MUSIC to my ears!  That is a huge ray of hope. I hope the news continues to be good. By the way I read all your posts on vitamins and such and my daughter's fiance has Lymphoma but has been in remission for 2 years. He credits his Natural pathic doctor along with his chemo sessions. He gets HIGH doses of vitamin C intravenously. One never knows. Anything is worth a try!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News/ What's Working

Hi Jack,

Great news indeed and thanks for sharing it with us all! Hopefully the good news will continue for you and that the tumour will continue to shrink. I will keeo my fingers crossed for you!

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Good News/ What's Working

Great news and YES you can shrink it enough for your options on surgery to change. If the doctors arent observing you for that, it is time to change doctors. Best of luck.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

10 (edited by KentuckyJack Thu, 24 Jun 2010 13:40:24)

Re: Good News/ What's Working

Last week the cancer center ran MRIs and CT scans on my chest and pelvis to see how my response to chemo was progressing.  The good news is that the massive mass has continued to shrink down to 6.7 X 5.6cm from the previous 8s and 9s.  When the onc showed me the scans on his computer both I and my friend could see the obvious serious reduction in size when compared with previous scans of this spidery mass with tentacles.

Some bad news is that it appears to be shrinking along the lines of its original apparent growth pattern, which means than although the outer parts are dying off, the encasement of the left portal vein and the anterior division of the right portal vein is unchanged.  This and the fact that the mass originally and still abuts against the main portal vein, as well as unchanged obliteration of the middle and left hepatic veins by the mass lesion--provided the original grounds for ruling my stage 3 cc as "non-resectable."

More good news is that the onc feels that the progress to date justifies further consultation with the surgeon who may possibly feel that things have changed enough to justfy the knife.

The other bad news is that my aggressive chemo treaments with the oxiliplatin/Gemzar/Xeloda blend have taken their toll on platelets and white blood cell counts, so I've been given this week "off" chemo.  I had 4 Neuprogen shots last week but the marrow hasn't yet been jump-started sufficient to resume treatment.

Yet more good news is that The tumor team is meeting this week, and I see my onc next Tuesday--when he anticipates a decision will have been made about whether to continue with chemo at the same or reduced dosage, or schedule straight away for surgery, or radioembolization or chemoembolization by the interventional team.

And still more good news is that the onc who originally characterized my tumor as "huge" has now characterized the response to treatment as "remarkable."  Makes me feel like clear progress has been made, and I just hope it keeps me ever more clearly on the path to surgery and recovery.

Thanks to all for your support!

Re: Good News/ What's Working

What wonderful news. Lets hope the surgical team wants to be as aggressive as your oncological team.

Fingers crossed and thumbs held.

Kris

Cancer is a word, not a sentence.

36 year old patient with buckets of hope

Re: Good News/ What's Working

Hi Jack,

Some great news there and thanks for sharing it with us all. Hopefully the good news will continue for you on Tuesday when you meet your onc. I will keep my fingers crossed for you.

Best wishes,

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: Good News/ What's Working

K. Jack, I do believe you just won an award for the most outstanding "Good News, Bad News, Good, Good News" post. Love it and your news. We will stay tuned for word on the Grand Opening!

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News/ What's Working

This sounds really goooood to me, Jack big_smile.  Thanks for telling us & Good Luck with the Onc appointment.

Julia x

“When it is dark enough, you can see the stars." - Ralph Waldo Emerson

Re: Good News/ What's Working

Thanks for the award, Lainy!!  Not only did you figure out the award I was fishing for, but you made me laugh, and that always merits an award right back at you.  God bless you both!  And yes, you've an open invitation to the Grand Opening!

Re: Good News/ What's Working

I'm so glad of your good news, KentuckyJack.  You had mentioned before that you take vitamins, supplements, etc. and I was wondering if you thought that they are helping, too.  I take Milk Thistle and a mushroom complex and a few vitamins and I think they have helped my liver enzymes, but not sure how they have helped the cancer.  My CA-19 is up to 6665 and the CEA is 7.9.  This has me worried but my doctor doesn't want to start chemo until the scan shows that the cancer is growing.  I am wondering if anyone else's might be that high.
I will have another blood test and MRI the middle of July.  She has mentioned that they would give me Genzar/Cisplatin when I have chemo, again.
I have checked with doctors up and down the state and they have all agreed that chemo is my only choice for treatment.  The last doctor I saw is a specialist in Brachytheraphy, but after seeing my scans, he said I was not a candidate.  I did not ask why, since the doctor at UCSF had said she didn't think that I should have it because for me right now the risk would be much higher than the reward.
I am still feeling good and for that I am grateful.
By the way, what cancer center are you going to, KentuckyJack?
I like to hear about the good news from all of you.  Thanks, for sharing.
Theresa

17 (edited by KentuckyJack Mon, 02 Aug 2010 01:09:21)

Re: Good News/ What's Working

To all:  On July 27, I went in to the Siteman Cancer Center at Barnes/Jewish hospital of St. Louis, MO for an arteriogram/mapping session to inspect the routing for my planned radioembolization on August 11.  The mapping session was ended early when the docs found that the tumor-blocked blood supply to the left lobe of the liver had caused the arteries/veins to atrophy beyond the point where they would allow safe passage and planting of the microspheres for successful intervention.  The doc in charge said there were still treatment options which, although less ideal than radioembolization, would offer hope for shrinking/killing the tumor.

Today, July 30, 2010, I received a call from the chief Interventional Radiologist, who discussed Siteman's next proposed course of treatment.  He proposes to use their stereotactic equipment for stereotactic radiotherapy/radiosurgery.  This involves 5 sessions (over two weeks) of external radiation aimed at the tumor from a variety of different angles so that the radiation received by the tumor will be much greater than that received by surrounding tissues encountered by the radiation beams en route to the tumor.  Few side effects are to be expected, possibly including some heartburn and mild queasiness/nausea--and I should be able to drive myself to and from the sessions.

They have a triplex (?) unit that includes three different treatment devices, according to the Siteman website--I think they'll be using the basic stereotactic part on me.  The good news is that over a period of a few months after the radiation, it should become apparent to what extent the treatment is successful.  The disadvantage of this procedure over the originally-planned radioembolization/microspheres is that the stereotactic procedure only gets the cancer that is visible on the imaging devices, whereas the radioembolization/microspheres would have penetrated more deeply into the liver to get at cancer that might not show up on the images.  The other disadvantage (?) is that the stereotactic radiation is considered only as a replacement for surgery in my case.  According to the Interventional Radiologist, the aftereffects of the radiation include scarring of tissues which will render surgery impossible.

Overall, it seems that the sterotactic radiation therapy edges more toward the palliative than the curative treatment that I'd hung my hopes on, but if successful, it should buy me more time and perhaps, after follow-up chemotherapy, a return to work.

Well. there's my "show and tell" for the week, and what a week it has been.  Severe disappointment on Tuesday turned to less-than-ecstasy for Friday evening, but with a sincere "Thank God" for a treatment option with continued hope.  A good weekend to any and all interested parties.

Re: Good News/ What's Working

Jack....I liken this cancer to a fire.  At times, it can be distinguished, other times flair-ups are controlled as they appear.  Either way, it can lead to success.   I am grateful to hear that another approach can be taken and I wish for an absolute and perfect outcome.  For all we know, this may be the last intervention needed in order to keep this cancer at bay. 
Best wishes and I nice weekend to you, also,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER

Re: Good News/ What's Working

I've been overwhelmed by procedures and pending decisions and information by a multiplicity of sources in the new(to me)  and strange area of radiology for the past month.  Comments from several of the docs involved are:  "The stereotactic radiotherapy (Stereotactic Body Radiation Therapy--SBRT) for you has a very good chance of getting some result, is very unlikely to cure it,  it may however more or less permanently control it."  "I don't know if the damaged liver lobe will regrow after radiation as it would after surgery."  "The main side effect of your SBRT is fatigue lasting from one week to one month."  "You won't be considered for adjuvant follow-up chemotherapy for two months after the end of your stereotactic radiotherapy treatment."  "After treatment, there is a 60-70% chance that the cholangio tumor will NOT grow back at the exact same spot."  "The SBRT WILL likely stop all visible cancer in the tumor, which means that the tumor will likely stay where it is, but will NOT grow forward."  "Although there is a 60-70% chance that the cholangio tumor will not grow back at the exact same spot, statistically there is also a 60-70% chance that metastases WILL grow elsewhere with ICC patients."

There's been a good bit of information to collect and digest.  Next week, I see my chemo onc again and will inquire of his opinions about recommensing chemotherapy in place of radiation or following radiation.  The radiology onc said there would be no  adjuvant radiation to the exact same tumor location since I would be getting the highest allowable dose with the scheduled SBRT.  Subsequent surgery is extremely unlikely due to marked scarring from radiation.  Radioembolization with microspheres has been ruled out, as well.  SO, my choices of traditional treatment are narrowing.

My choices of treatment are also narrowing by law, since I have now completed the transition from Blue Cross/ Blue Shield to Missouri Medicaid--which limits my choices to treatments and doctors to those practicing in the State of Missouri.  (Ain't health care reform grand?  But seriously folks.....).

The GOOD news for me is that CT scan results from 8/10/2010 indicate that the measure of my tumor reveals still-continuing shrinkage from 5.6 cm AP X 6.2 cm transverse on 6/17/2010  down to 5.4 cm AP X 5.0 cm transverse.  It seems to be a little over half as big as it was when chemotherapy was started in early March this year.  The other GOOD news is that the CT report said that there is still "NO CT evidence of metastatic disease.(!!!)"  Thank God, nutritional supplementation, and chemotherapy!!

So, having passed through the CT scan hurdle, my old body appears to have qualified for the SBRT clinical trial.  The radiation treatments, each lasting about an hour, are scheduled for the last week in August and the first week in September, and there are five of them.

The OTHER GOOD news for anyone qualified and interested is that my radiation oncologist at the Siteman Cancer Center/Washington University and Barnes/Jewish Hospital of St. Louis is seeking calls from those qualified and interested in participating in his SBRT clinical trials.  I am emailing Marions with details, but he said he ONLY wants prescreened calls from those whose cancers have been determined to be non-resectable, preferably having been treated with the standard chemotherapy regiment for ICC or HCC, and with absolutely no metastases or lymph node involvement.

Re: Good News/ What's Working

Good Morning Jack and as usual its nice to wake up to your good news. I am sure many will appreciate the news about  Barnes/Jewish Hospital of St. Louis  seeking calls from those qualified and interested to participate in SBRT clinical trials. As always you continue to be a beacon of light and keep up your own fantastic work.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHING
Any suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: Good News/ What's Working

Hello Jack,

Well, there was certainly LOTS of good news in your post.  Thank you so much for sharing everything with us.  I do learn a lot from your posts too. 

Congratulations on so much shrinkage of that tumor.  You can really say things are working for you.  Good luck on the upcoming radiation treatments.  I hope that you are tolerant of it's side-effects and you get through it well.

Keep in touch,

Linda

"Life is not about waiting for the storms to pass...
it's about learning how to dance in the rain."

Re: Good News/ What's Working

KentuckyJack...thanks for posting this information.  I have contacted Barnes and am awaiting a reply re: the clinicaltrials.gov identifier.
Best wishes,
Marion

THIS INFORMATION IS NOT INTENDED NOR IMPLIED TO BE A SUBSTITUTE FOR PROFESSIONAL MEDICAL ADVICE. YOU SHOULD ALWAYS SEEK THE ADVICE OF YOUR PHYSICIAN OR OTHER QUALIFIED HEALTH CARE PROVIDER