GrouseMan, rp1954 - how your wives are doing?

[vilca11]

Guys, I do not see you posting here anymore - what is happening in your families? I so hope all is well... Missing your postings... A., cant find your direct email in my mess...
Hugs, Vilca

[rp1954]

Doing fine, Stella. Breaking training too often (weight, empty carbs, 1/2-1 glass of wine 2-4x week, skipping secondary treatments half the time), having some real life and support changes, as well as logistical challenges. Some minor chemo brain issues. Overall she's pretty optimistic. She was always anemic, even after 5.6 yrs continuous chemo her latest Hgb is 14.

Getting everything perfect is difficult, e.g. got CEA and CA19-9 back to the post surgical baseline after last 2 years efforts; peaked AFP with a 50% reduction after restoring more IV vitamin C dosage to the chemo stack. I have a feeling of brittleness, skating on thin ice as things evolve and change, somethings become more difficult, like maintaining supplement and chemo dosages or IV frequency, or the rise of once minor markers.

[vilca11]

Well, you are a hero in my books... I have no idea how you manage it - it is just unbelievable to hold a person with her dx for 6 years in great condition... Of course it is becoming more and more difficult, but hang in, my dear, new ideas and findings are popping up that might give your wonderful mind a good food for further development of your strategies...
Just taking my hat off, sweetheart, she is so lucky to have you. Hugs to both of you and thanks for the update. Stella

[NateA]

Heartwarming! Good man!!

[GrouseMan]

Vilca - I am here most everyday, but have become very weary of posting much anymore. I usually just read the news releases from Garbovatwin, and a maybe one or two topics that might catch my interest. Most of what I have had to say has already been said sometimes many many times. I am starting to sound like a broken record. DK is actually better able to spend the time doing the research, and making explanations I usually or use to perform, as I don't have the resources I had when I still worked as a medicinal chemist in the pharma industry doing anticancer drug discovery. My present job doing informatics for this industry is changing as well, and I find most of my knowledge management work is taking me into other industries managing chemical information in non pharma areas more and more - so even this interaction with other medicinal chemists is becoming less and less. I don't have the time anymore to go the 60 miles round trip to access a really good research library and scan journals anymore. This stuff isn't easily available on line even in this digital age and what is available is very expensive to access that way.

Additionally I am on the edges always of depression. I have always been that way even before my wife's diagnosis. I worry about EVERYTHING and its hard for me to focus on work a lot of the time now. I have very few friends around now that the company I use to work for closed up shop - everyone has left the area. Family is not of much use to me support wise. I hear more about their problems then they can even begin to guess at mine! My wife is doing OK, but in late August her CT scan started to show involvement in her abdominal cavity after things having been stable for about a year. I suspected something was going on before that as her CEA was starting to creep up very slowly, in the three months prior to that CT scan. Of course the Abdominal Mets didn't just suddenly grow. They likely had been there while she was on maintenance therapy and just finally got big enough that they could finally be seen on a CT scan. The CEA increases where small but steady, and of course her oncologist was still happy that CT scans were stable and nothing new until that last one. BUT the radiologist also missed that something was impinging her kidney. Her oncologist was not happy to find that out in the last CT. Going back he looked carefully and saw it in the previous CT now that he knew it was there. He was very upset that the radiologist missed that and didn't bring it to his attention. Next week my wife is going into have a stent put in to relieve the pressure and help improve her kidney function in that kidney. She is back on more frequent Chemo now getting Iri, 5-FU and Avastin, every other week. CEA is no longer rising, and things are back to stable again things are not growing, but they are not yet shrinking either. The Iri is harder on her then the Oxy was I think as it messes up her appetite much more, and of course makes it harder on her bowel movement regulation etc. Liver Mets are still calcified, Spleen Met can't be seen any longer and Lungs things have never changed at all since diagnosis. She still tolerates chemo very well compared to many folks, continues to work, ride her horse when she can and train her dogs (We did that last weekend).

But as we know abdominal Mets are not good at all. Very difficult to treat. I know I know everyone talks about Hipec... I am pretty sure we can't afford that at all. It would be out of pocket as just about everywhere its still considered experimental. And even if it were not - its a crapshoot. It' not an easy thing and with the other mets still there though calcified finding someone willing to do it will be tough even at MSKCC or MDA. Other mets usually preclude any surgical intervention. My wife's oncologist doesn't think something that radical will in the long term help her much. So - I sit on my hands waiting for new immunotherapy methods. I have heard that the PD-1 PDL-1 Mabs are pretty rough on the patients. I have a friend that works part time in his retirement at a research hospital in the pharmacy that preps these agents for the patients. For many the number of cycles have been short, as they have had such sever reactions to these agents that they have had to stop taking them. They are VERY hard on the patient. Despite the hype and the TV commercials its not at all as good as it seems. A lot of people simply can handle the side effects. It will take a new generation of immunotherapy agents I think. We are learning a lot, just not fast enough. My same friend however says the DC-Vax treatment from Northwest Bio they are trialing at his hospital and its looking very good, but they are using it in Glioblastoma's. Its not been tried in many other solid tumors yet. However these brain tumors are responding very well to this DC-Vax treatment. Nothing is however moving fast enough along to satisfy me with regards to colon cancer!

Well - I better close. Thanks for asking about my wife. We are as you see in a holding pattern I think.

GrouseMan

[vilca11]

Oh, GrouseMan... tired you ARE, our dear friend... Many thanks for your response, honey... If your wife stops chemo at some point, may be she would want to start high dose IV vit C - 100grams x 2 or 3 a week, if I remember correctly? Works great on the abdominal spread, calcifies it - rp1954 was doing it for his wife and when peritoneum was opened, all deposits there were already dead... Check with rp, I do not rely on my head anymore, cognitive function is already affected to some degree...

With the depression, I have it for 11years, it started one year before my first cancer outbrake, I've been relying on Lexapro all this time... So, technically, I am not depressed anymore, but more like sad and do not like being among people, socialize.... no much interest to things other than related to cancer, to my close friends, to Russia and to my home life in Vilcabamba.... Symptomatically, these are signs of depression, while if you ask me, I would tell you that when I am home, I feel so fortunate and happy... while for some reason still prefer to spend time in my bedroom alone, though... Not because I cant get up and do something, but because I do not want to get up and so want to be alone... Like there is a very important task that requires all my concentration... So, I understand what you are talking about very well...
Warmest hugs, love and light your way, sweetheart... Vilca

[GrouseMan]

Follow up - its been about a year since the mets turned up in my wife's abdomen discovered through a gradual rise in CEA and finally confirmed in a CT Scan. At first they tried FOLFIRI plus Avastin, but that didn't seem to help much. Around March 2016 she joined a local trial using just Irrinotecan, Erbitux and Avastin (no 5-FU). That brought her CEA back down to about 6, but the main problem was the Met that was the largest was against her Ureter from her Kidney to her bladder. So she had to have a stent inserted to keep it open. Those have caused her considerable discomfort as they don't bend well limiting her activities somewhat. She was in a lot of pain last night as a mater of fact and is scheduled in a couple of weeks to have it replaced again, which should help some (They get crudded up I guess).

Well zoom ahead from March to now. Her CEA now has been increasing again gradually, the last couple of tests. So the Erbitux as expected likely isn't working any more so she is no longer stable. The CT Scan last week showed an increase in size of 4 to 6 mm from the last CT scan in a couple of the abdominal lesions. She saw oncologist this morning and they are dropping her from the trial now. Her oncologist is looking for next options. To say I am depressed is an understatement. We need to find something else to get these under control - Liver and spleen is still stable, the old Lung things still to this day have never changed and are probably not mets. Its possible I think, that after a 6 month break from Erbitux it or one of its related class of drugs might start working again, but we need something in the interim.

She is attempting to schedule a biopsy to determine if these things have undergone some kind of mutation they can take advantage of or not. Peri- mets are the hardest I think to treat of all. Damn it all. She is retiring at the end of this month. At this rate she gets a year maybe two to enjoy it???? I just want to explode I am so angry!

GrouseMan

[Maia]

Peri- mets are the hardest I think to treat of all. Damn it all. She is retiring at the end of this month. At this rate she gets a year maybe two to enjoy it???? I just want to explode I am so angry!

Terribly sorry to hear, GrouseMan. And I know what you mean --for a friend of mine, I've been in a personal battle with peritoneal carcinomatosis. Please check this thread (PIPAC) and we can PM, if you want.

[Maia]

Also,

A Phase 1/2 Study to Investigate the Safety, Biologic and Anti-tumor Activity of ONCOS-102 in Combination With Durvalumab in Subjects With Advanced Peritoneal Malignancies https://clinicaltrials.gov/ct2/show/NCT02963831
New York, not yet recruiting. Oncolytic virus + Astra Zeneca's anti PDL1. Subjects with peritoneal disease who have failed prior standard chemotherapy.

[jhocno197]

Grouseman, I am so sorry to hear this.

[vilca11]

Oh, GM, this all is probably harder for you than for your dear wife... The only thing I can say is do not think about future, about all that might be happening in that future... Start every day with thanks to Universe that it is one more day you have your wife alive, despite all the pain and suffering she had to go thru... The moment you concentrate on today's life only, the value of that day with her next to you will fight your depression and propel your actions in helping her for just another day, for just the next day after another day and so on... My heart goes to you, dear friend... Cancer makes people and their dear ones so helpless, so depressed... Accept that, do not rebel, just accept both your feelings and the reality of cancer... we all are going thru these feelings, it is very hard to stay focused on Life when you are going thru such tragedy... But try to focus only on today's Life, today's actions that are needed, today's dinner or shopping, etc. And listen to the uplifting music...We all die, some sooner, some later, that is Life too and loses are part of everyone's life... No point in experiencing all that pain ahead of the event, no need to survive that pain twice... It is enough of today's pain to go thru anticipation of the future one... Yes, there is very little one can do to change the outcome of stage 4 patients, but today's love and warmth will make your wife feel much better and make her stop thinking about the future too...All we have is today - that is what should be realized - and we have to make that "today" as beautiful as we can - with flowers, music, cuddling together, tasty dinner, etc... You know from what position I am speaking, I should have been dead, according to doctors, last October, then last June, and dr. Kemeny could not look in my eyes during our last meeting early December... But I came home from my unsuccessful half a year in Spain and started with life business - built a pavement from the gates to the doors of the house - 160 sq m pavement for the cars, then did auto watering system for the garden - can control it from the iPhone from any point on Earth, now hope to paint inside of the house in the color I prefer, etc... I do not think of cancer, unless I have to make a decision about further actions (which seem to be almost non-existent at that point). I just live everyday life, like nothing is happening... with narcotic's help, which does cover half of the pain... So, it is doable, the hell with cancer, it is not going to spoil my last days... That is all I can say, dear GM, not much help, probably, but just one of the ways to withdraw yourself from excessive sadness and depressive facts of life...
Love and warmth your way, dear friend...
Vilca

[lpas]

I'm so sorry to hear that, Grouseman. I hope you find a good trial. Your wife is very lucky to have you on her side.

[bitchslapped]

It is indescribable sometimes the heavy weight of helplessness the caregiver carries on their shoulders for their loved ones. One you have to swallow, keep silent from the patient, after all they have enough to cope with. I hope you continue to update. Interested in results of biopsy, next steps.

Best Wishes
BS

[DarknessEmbraced]

Rp1954: I'm glad everything going well with you and your wife!

Grouseman: I'm so sorry that things are looking up more for your wife. I hope she can get into another trial which will help!*hugs*

[GrouseMan]

Maia and Vilca thanks for your sentiments. My wife's oncologist is suggesting the MATCH trial. The biopsy is to determine the drug or drugs from many different classes of chemo to try that have various mechanisms of action and that the genetic screening of the mets might point towards being good candidate matches to particular drugs. He is also going to consult other oncologists at Karmanos, and other practices to see what else might be available. There are only 4 to 5 mets visible in her abdomen of which the largest is the one on her ureter. He is absolutely not concerned at all with the calcified liver mets, or the met that disappeared that was on her spleen. The 3 lung things he has never been convinced is cancer. He is focused on something to put a halt to these peri-mets now. He is open to suggestions from me as he realizes I have contacts and information he frankly doesn't have easy access to or has had the time to investigate himself. I doubt seriously he knows anything at all about turning MSS tumors "hot" for instance as DK has mentioned many times and making these sorts of things active towards immunotherapy. He mentioned for the first time HIPEC, but he doesn't think that is a good choice as he has never really seen it provide a durable response, and its awfully hard on the patient! Better for younger folks, though he considers her to be in very good health and shape otherwise. Maia the suggestion of PIPEC is a good one but since no one in the US performs this yet and travel outside the US would be prohibitive - this will have to wait a while I think. Your other suggestion looks interesting and will require some more investigation.

The MATCH trial is probably a good choice in the short term in that we garner more genetic testing information, there is a follow up one that is similar which will test even more. In the mean time I will try and research some of the materials DK posted on the curated ColonCancer trials web site he has created. I'll likely send this link to my wife's Oncologist to help educate him. I have a contacts myself at the Detroit Area Karmanos Cancer center as well as at the University of Michigan which is a major research hospital near us. I may also contact DK and discuss some options as he has even more contacts.

Best Regards,

GrouseMan