Carefree moments are almost impossible for those with cancer to come by. This is an ingenious idea and follow through. Love it!

http://www.businessinsider.com/the-mimi-foundations-if-only-for-a-secon…

Good morning :)

I want to share our newest Case Based Panel Discussions videos covering Stage I-IV) with the forum.  Most of you probably know that oncologists see each case as an individual disease.  That's because most all cases have at least one unusual component that can/should be considered when planning.  It's where the idea of "the art of oncology" comes into play.  When we read statistics it's important to look at the whole spectrum of individuals' outcomes.  My husband and my favorite example is he was restaged or recurred after curative chemo/rads which was either a mistake or spine radiation got rid of that last bit of cancer or... The point is he took a treatment break 11 years ago and never progressed (remember, inflamed scar tissue looks the same as cancer on CTs and PETs).  That's just the tip of the iceberg of rare and unusual aspects of his journey.  When you're a part of individualized planning a trip that interrupts treatment would be discussed and maybe even considered an important aspect of care.

This is where the case based discussions come in handy to us lay people.  Here they discuss how they look at an individual and all their differences to create an individualized plan. If you're reading this you've probably also consumed lot's of articles and videos that give outcomes/stats, that perfect number that falls in the middle of a wide range of numbers (people) half on either side. That works well when considering the entire population of that group but consider the individual that you are and don't expect to fall on that median number, sometimes no one does. 

I hope you have a good day or good moments in your day, ;)

Janine

Just in case you've missed or misplaced our 2021 Targeted Therapies Forum check out Grace's refreshed Front Page links and links to the new faculty video series on clinical trials.

I've started this thread for a new member I've been messaging with and we wanted to bring the conversation to the forums.
Pandora wrote about her person who has a pancoast tumor and since my husband also had one wants to hear what I have to add.
Her last post said, "I just wanted to know how your husband dealt with the disease. My father in law has an abdominal aortic aneurysm. He is 76 and thw pdl 1 is >1-49%, which is not so good regarding to the treatment with immunotherapy in first line."

Don was very sick for a while and the tumor left lasting physical problems but chemo and radiation cured him. He like everyone with nsclc had a lot of individual issues that make comparison difficult (it's why many oncologists look at each case as an individual type of cancer). But the destruction the tumor caused in his ribs and brachial plexus is likely similar. Your father in law with an abdominal aortic aneurysm may benefit from consulting with a vascular or cardiac specialist to help guide treatment options such as possible chemotherapy after radiation. Chemo with or after radiation adds a few percentage points to the cure rate.

Has radiation helped with his arm and shoulder pain and what has his doctors said about systemic (chemo, immuno) options in consideration to AAA?

All the best,
Janine

I can see that the new GRACE is a major undertaking involving a lot of work, but just wanted to offer some suggestions from a user's point of view.
- In general, I think the pages feel a bit cluttered and hard to navigate. In particular, I am not sure it is worth distinguishing, on the right-hand-side of the page, between "new forum topics" and "new forum replies", as these are essentially the same thing. To have both takes up space and risks a lot of repetition. If this doubling up were scrapped, there'd be more room for recent comments from different forums.
- Some "Comments" (on faculty posts) from the old, frozen site are appearing - are these just as "fillers"? It is quite misleading as it suggests these threads or comments are still active (for eg I've just come across a comment from Regina on a 2009 post of Dr West's).
- I know it is a web convention to be fixated on time (posted ten minutes ago, an hour ago and so on), but I wonder if this "freshness" is overemphasised in the new version. On GRACE, which already operates in a number of different time zones, the question of when something was posted is far less important than who posted it, what it's about and whether you've already read it. It would be great to have a function, as on the old site, that labelled posts as unread or new. To me this is far more important than how long ago they were posted. I was probably in bed at the time :)
Many thanks, and I hope feedback is acceptable in the context of everyone's hard work, which is much appreciated.

There is not a ton of info available for Cholangiocarcinoma, so seeing information come up with new developments is always exciting.  In this video, Rachna Shroff MD, chief of Gastrointestinal Medical Oncology at the University of Arizona Cancer Center in Tucson, AZ, highlights novel therapies for the treatment of cholangiocarcinoma and opportunities for utilization of precision oncology and the development of targeted therapies for genetic alterations in patients dealing with a diagnosis of cholangiocarcinoma. 

Watch the video HERE. 

Let us know what you think. 

March 17, 2018 at 8:12 am #1294101

masalovai
I have stage 4 NSCLC adenocarcinoma with bone metastasis. I started carboplatin Alimta Avastin chemo treatment and wondering if this triplet is effectively treating bone metastasis as well….. I am also receiving zoledronic acid every three weeks , but it does treat bone mets.

There are very limited publications related to effectiveness of standard chemo on bone metastasis. I’ve found that targeted drugs such Erlotinib and gifatinib are very effective in treating bone metastasis.

I am afraid of bone mets progression and would like to find out if I can have any treatment for bone mets in parallel with my chemo treatment. Can I probably add gefitinib to my triplet….. ?? I’ve found one paper discussing this combo. They observed some improvement , but only 6 people were involved in the trial.

Thank you

Irina

March 17, 2018 at 8:17 am #1294102

masalovai
These are only references I’ve found which related somehow to the treatment of bone metastasis.

I would greatly appreciate if someone could send me more information on this subject .

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511889/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4599040/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998527/

Thank you
Irina

March 17, 2018 at 8:51 am #1294104
JimC Forum Moderator
JimC Forum Moderator
Hi Irina,

Standard chemotherapy tends to be as effective as any systemic therapy in treating bone metastases, as such therapies treat cancer wherever it is found in the body, with the possible exception of the brain due to the blood brain barrier, where response may be lessened. Adding an EGFR inhibitor would only be considered if your cancer has been found to have an activating EGFR mutation, but even in that situation most oncologists do not feel that there is enough evidence to justify adding an EGFR inhibitor to the chemotherapy regimen. One reason for this is that sequential use therapeutic agents tends to be preferred, allowing a patient to get the maximum benefit from each agent, rather than “using up” several at once.

Treatment of bone metastases may include the use of radiation in order to palliate symptoms such as pain, as well as to prevent fractures. You may want to discuss this option with your oncologist.

The papers you cite show interesting results, but as you indicate the small populations make it difficult to draw any firm conclusions from the data, and larger, randomized trials would be necessary before such approaches gain clinical acceptance. The evidence is especially weak in the case study of an herbal regimen in one patient, as quite unusual results can occur when looking at just a single patient.

JimC
Forum moderator

Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19
4 cycles Carbo/alimta, 65% shrinkage
Tarceva maintenance
Mar 2010 progression, added Alimta, stable
Sep 2010 multiple brain mets, WBR
Oct 2010 large pericardial effusion, tamponade
Jan 2011 progression, start abraxane
Jun 2011-New liver, brain mets, add Tarceva
Oct 2011-Dx Leptomeningeal carcinomatosis; pulsed Tarceva
At rest Nov 4 2011
Since then: http://cancergrace.org/blog/jim-and-lisa

March 17, 2018 at 9:58 am #1294107

masalovai
Many thanks, Jim , for your prompt reply. I so much appreciate your messages. I fully agree that results of those sources are not reliable enough , but as I’ve mentioned there are very limited literature describing direct effect of chemo treatment on bone mets.

How the combo of chemo therapy is chosen taking in account presence of bone mets? Probably one chemo agent is working better in this specific case than other one…….?

Or probably additional drug could be added to the chemo treatment to help with healing of bone metastasis…?

Can you recommend any publications discussing treatment of bone mets , but not management of pain or bone destruction associated with them.

March 18, 2018 at 10:49 am #1294113
catdander forum moderator
catdander forum moderator
masalovai,

It doesn’t matter if the lung cancer metastasized to bone or organ if the systemic treatment works it works where ever it is except the brain. As Jim said chemo doesn’t often make it into the brain because of the protective barrier known as the blood/brain barrier.

The treatment that targets bone mets are the Bisphosphonates such as zometa.

So when reading research about bone mets, metastatic lung cancer, etc., systemic treatment efficacy includes efficacy anywhere outside the brain including bone but there are no specific anticancer agents that target bone.

I hope you do well and are feeling alright.
Best hopes,
Janine

This reply was modified 1 week, 4 days ago by catdander forum moderator catdander forum moderator.
This reply was modified 1 week, 4 days ago by catdander forum moderator catdander forum moderator.
March 18, 2018 at 11:43 pm #1294116

masalovai
Thank you, Janine , for your answer. I’ve learned from the literature that Tarceva is very effective for bone metastasis and some oncologists use it together with chemo. I just wonder is it works for people with negative EGFR ……. Probably the choice of chemo combo needs to take in consideration present of bone metastasis…..?

The literature also says that the effect of chemo is quiet limited for bone mets , specifically in lung cancer cases , but I am sure that some chemo agents could be more effective than others.

Unfortunately there is very limited publications in this subject.

I’ve seen in this side that doctors participate to discussions. Is there any chance to have their opinion…….?

Another question: I found just a few recent communications on the subject of lung cancer in this side. All other discussions are quiet old ….. probably I don5 know where to look.

Thank you very much again for your very valuable comments, your time and wish to help people.

All the best

Irina

March 19, 2018 at 12:04 am #1294117

masalovai
What is about Disulfiram , which has been found very effective in bone mets….?

https://www.ncbi.nlm.nih.gov/pubmed/25777347

Some other publications are also available. I just wonder if it could be safe with my chemo combo, particularly with Avastin…. I am receiving Carbo,Alimta Avastin.

My second cycle is next week. I also receive Zometa ones in 3 weeks.

March 20, 2018 at 2:49 pm #1294120
catdander forum moderator
catdander forum moderator
Unfortunately, there hasn’t been any new developments in metastatic bone health since the advent of bisphosphonates. Even though they are 8-10 years old drugs like zometa are still the standard of care for bone mets plus systemic treatment. There are also orthopedist centered treatments such as vertebra strengthening procedures to help combat bone mets. http://cancergrace.org/cancer-101/category/cancer-101/general-lung-canc…

The study you mention above seems to be the only clinical trial on nsclc and Disulfiram. This trial really only shows that it’s safe and worth studying more but much too small to say adding disulfiram raises survival rates. There are ongoing trials for other cancers so that’s better than nothing. If trials in breast cancer and prostate cancer turn out positive then it’s more likely to be considered to be studied in lung cancer. It’s difficult to get funded for this level of research and it doesn’t sound like there’s much monetary incentive to study disulfiram for the pharmaceutical cos. That’s why the wonderful organizations that raise money for breast cancer are so important. I used to be jealous that breast cancer got all the attention and funding but it’s paid for good research that benefits lung cancer as well.

Our faculty occasionally comments on the forums but not regularly like they used to. I know they can add a lot of reassurance and credence to the discussion and that’s why we use the blog and forum posts as resources. I hope we are still able to help you understand your options moving forward.

All best,
Janine

March 21, 2018 at 1:36 pm #1294123

masalovai
Dear Janine

Thank you very much for useful information and all support.

Wish you all the best with your journey.

Irina

I just wrote a post about questions I had after seeing the excellent movie "Dallas Buyers Club", about how patients and caregivers really feel about the clinical trials system. The post is here:

http://cancergrace.org/general/2013/11/29/is-the-system-of-clinical-tri…

I'd welcome your honest thoughts about whether people trying to navigate in a world of of promising but also potentially dangerous new drugs for a dire medical illness feel that the system works in their best interests or works more against them.

Thanks for any input you have. I'd love comments here, after the post in the link above, or join us for the #LCSM tweet chat Thursday at 8 PM Eastern, 5 PM Pacific, if you do the Twitter thing...

-Dr. West

<span style="text-align:center;">GRACENotes Volume 48 -The newest happenings on GRACE

Don't miss out - receive the newest information from GRACE in your inbox every Friday.

View the newest GRACENotes here! http://conta.cc/2fcHBRn</span&gt;

Hello,

Today I'd like to share a new playlist on our youtube channel, Importance of Testing.  These videos cover prevention, screening, and early detection of skin, lung and breast cancers. 

To further your understanding and that of others, you are always welcome to post questions, thoughts, replies, and experiences.

Be safe,

Janine