[continued from the previous post]
"In contrast, another treatment has 0% response rate (granted, I’m picking an extreme example just to get a point across) because all patients have only 5% shrinkage. But, for this treatment, it lasts much, much longer—it’s a full year before the cancer grows again. For most patients, this second treatment would be better even though its RR is lower. The notable exception would be the patient with terrible pain not responsive to pain drugs, for which response is needed urgently to improve symptoms." - http://cancergrace.org/topic/understanding-overall-survival-and-response...
Also note that there can be shrinkage of as much as 29%, yet not qualify as a "response".
Enjoy your holiday weekend as well.
<p>I began visiting GRACE in July, 2008 when my wife Liz was diagnosed with lung cancer, and became a forum moderator in January, 2010. My beloved wife of 30 years passed away Nov. 4, 2011 after battling stage IV lung cancer for 3 years and 4 months</p>
Thanks for that additional information Jim, I can see the balancing act there. Hubby has no pain, but increased difficulty swallowing. He was given 12-18 months at beginning and it's 15 months in, he's sure he will expire exactly at the 18 month mark. Trying to convince him there's not a stamp on his forehead is tough. 8 more weeks until next scan, these will be long weeks.
I certainly understand the idea of wanting to convince your love that there's no stamp after a doctor has given him one. It happened to my husband and as you can see he's well past that. I just wanted to lend support to you. I wish I could speak for the hundreds of good idea people who've tried so many things. I think it comes down to getting the mind on something else. What that something else might be I don't know. Reading aloud to one another, providing foods that go down easy, go on trips, play with the dog...The mind game cancer plays is horrifying to say the least. As for you, well I hope you have someone who can provide the same for you. And if/when it all is too much and all you want to do is scream, a moving car is the perfect place.
Keeping you in my thoughts,
Thanks Janine. I've done the screaming in my car when Mom had cancer in 2011, I know that trick. I have another question about nutrition. How do we know when its time for supplemental nutrition? Hubby finally managing to not choke/throw up a couple of things the last 2 days, but barely eating anything. Is it a certain amount of weight loss? or fatigue or blood work? He says to me he will NEVER go for a j-tube or TPN, but I think if Drs suggest it, he will change his mind. I also think it would take the pressure off him mentally of HAVING to eat. Hoping the last 2 days of less difficulty are a sign this taxol/cyramza maybe might actually help him for a while. Next dose tomorrow. Cheryl
I'm going to ask a head and neck oncologist to comment on your question about feeding tubes. As you know we don't have expertise in esophageal cancer where the need for feeding tubes may come up more often. However if someone here knows about that it would probably be Dr. Weiss.
Placement of a PEG tube is easier than it may sound. It's a ten minute surgery with relatively low risk and rapid recovery. When it's no longer needed, removal is an office procedure (pretty much just removing any stitches then pulling it) with the stomach healing within minutes. I've never had one, but my patients who have tend to look back and say that it wasn't as big of a deal as they thought that it would be.
The tube provides access to the stomach. So, for patients who have pain swallowing or mechanical troubles swallowing, it allows for nutrition to be given. For these situation, PEGs can be great--it's hard to have good energy or to recover well without nutrition. When the problem with eating is more nausea, PEGs are only a little better than eating by mouth as food is still going into the stomach.
It's never the wrong time to talk to the doctor about a PEG. Conversation does not mean that a person has to do something. It just gets more information and more perspective.
Thanks so much for this information. Heading into Boston for #2 of Taxol today. Will ask what they suggest about supplemental nutrition and how it usually goes with their other EC patients. Lately it's day by day and everyday brings something new. Trying to hang onto this rollercoaster.
Update July 28 2016, hubby completed 3 taxol/cyramz and then had a week off. He started running fevers almost everyday up to 101. Took him for testing, no infections, but fever persists, today is day 10 of fevers again at 101.
He's also been very very weak, had to wheel him up to his dr appt Wed. Chemo was cancelled due to weak and fevers. Was sent for scans that day, which is 4 weeks early.
Only thing we know is they saw something in lung and are sending him for an induced sputum test Monday. Is that something ordered which could check for a possible lung infection? Still waiting for official read of scans.
They decided to check his TSH, which came out 9.4, checked free T4 it's 1.1. waiting to hear if he will need thyroid hormones. He hasn't been able to eat much at all, is very tired and weak.
Is thyroid something that can get destroyed with so much chemo? he's had 31 of them so far. I don't think EC metastasizes to thyroid often, but guess that could happen?
Thanks for listening.
I am sorry to hear of your husband's latest struggles.
Yes, the induced sputum test can help diagnose lung infections. And in clinical trials Cyramz (ramucirumab) was shown to cause hypothyroidism in a small percentage of patients. It is recommended that thyroid function be monitored during treatment with Cyramz.
I hope that very soon your husband's doctor's can discover and successfully treat the cause of his fevers and other symptoms.
Thanks Jim, official ct scan of chest is in. Learning the actual wording.
New ground glass opacities in all lobes of lungs. There are new small pleural effusions. The heart is at upper limits of normal for size. First time the reports mention heart size, could this be enlarged heart?
Possibly pneumocystis pnemonia.
Waiting is always so hard, won't get to speak with drs until next Wed. Day 12 of fevers.
This is what Dr. Sanborn has stated with regard to ground glass opacities:
"The most common cause of ground glass images is inflammation or infection, not cancer or BAC. When a person has had a pneumonia, we can see ground glass findings for quite some time. If these are found after cough or infection symptoms, the most common first step is to perform follow up imaging. This usually is performed between a month and several months later, depending upon the look on the CT and the level of concern of the doctor or patient. BAC does indeed move very slowly, and what we are looking for is for evidence that the ground glass images are improving. This would point very strongly to a benign source, and away from the need for invasive procedures such as a biopsy. Even in the case of "stable" images, there are times where ongoing monitoring may be more appropriate than moving directly to a biopsy. This is particularly the case if the areas are small or difficult to reach without a significant surgery." - http://cancergrace.org/forums/index.php?topic=4268.msg25398#msg25398
Certainly in combination with your husband's symptoms, pneumonia seems to be a very likely cause of these GGOs.
As far as the comment about his heart size, when you look carefully at what was written, it is still within the normal range. As a result, radiologists reading prior scans may not have mentioned it because it was not outside that range. Radiologists tend to have little information about a patient other than diagnosis or presenting symptoms, so at times they report findings that simply aren't relevant or worrisome. You could ask his doctor whether the heart size appears increased since previous scans, to see if there is a trend.
Otherwise, if pneumocystis pnemonia is suspected, I would expect that he will be treated an antibiotic such as Bactrim, and likely hold his chemo until he improves.
Thanks so much Jim. Still running fevers, guess we won't know anything until at least Wed which is our next chemo appt (expect chemo part to be cancelled).
Weird thing is about his heart, I always look at scans on CD and I noticed it seemed larger to me before I even read the written report. I was trying to measure previous scans to current scan, he has lost 55 lbs since start so I thought the heart should measure smaller, however in various places it's measuring slightly bigger. Just seems odd the this report is the first to mention it after 9 CT scans.
Waiting is not fun.
There are various reasons the heart may appear enlarged, including a pericardial effusion, which in itself can have various causes, including cancer and fungal infections. If your husband really does have pneumocystis pnemonia, that could be the culprit.
I hope you can get some good answers on Wednesday, and get your husband on the path to clearing up this condition.
Thanks again Jim. Just reading the abdomen written report, it all sounds not good to me. But will wait until Wed appt to get it all explained. :(
There is a new 1.2 cm lesion in hepatic segment 5/8 (series 301, image 21). Subtle hyperdensity along the surface of the right hepatic lobe is suspicious for metastasis.
Subtle hyperdensity along the inferior margin of the spleen is suspicious for metastatic spread.
A 2.3 x 2.3 cm soft tissue nodule adjacent to the gastroesophageal along the lesser curvature of the stomach may represent a nodal metastasis.
Subtle enhancement along the serosa of the sigmoid colon likely represent metastatic deposits. There is additional peritoneal thickening adjacent to the descending colon.
Findings suspicious for disease progression with peritoneal carcinomatosis, with thickening along the serosal surface of the sigmoid colon, right hepatic lobe and inferior margin of the spleen.
Yes, it is often problematic to try to interpret a CT report before talking to your doctor, who is in possession of all of the information to explain it best.
We'll keep you in our thoughts for a good meeting on Wednesday.
Update today, after some whirlwind days, we are now home on hospice with hubby. It's strange having no appts in the calendar. His fevers continued for over 2 weeks, nothing was found in all infectious workups including a bronchoscopy. Did 5 day course of broad spectrum antibiotic and no fevers since.
Today online I see this new info on lung test.
Gram StainNO POLYS , Very Rare MIXED GRAM POSITIVE AND NEGATIVE ORGANISMS WITH NO SPECIFIC TYPE PREDOMINATING
Not sure what that means. So onto this new phase and try to enjoy the next weeks/months.
I am sorry to hear of these latest developments. It's good that the fevers have ended, and I hope that hospice will be able to keep your husband comfortable and that you will enjoy many good days together.
I wish you comfort and strength in these difficult days ahead. He is fortunate to have had your love and support throughout his cancer journey.
Home with hospice since 8/8. Hubby doing a bit better since fevers stopped. However we see signs of food getting stuck again. If this progresses, we have to see what is available while on hospice to help alleviate eating problems. This road we might have to cross sooner rather than later. His last chemo was July 13, so we are a month out from that. Amazingly he still has no pain from any of his cancer, for that we are blessed.
Latest report from lung bronchoscopy regarding the new GGO in all lobes shows: "Acute and Chronic inflammation". From what, we may never know. Also saw it noted "failure to thrive' in his records. Assuming that's part of diagnosis allowing him to go on hospice.
Day by day.
Just checking in to see how things are going for Hubby and you. It's great to know that he's not been in any pain. How's the food intake situation?
Keeping y'all in my thoughts,
Hi Janine, thanks for asking, the eating is getting more difficult. He can swallow ok, but things getting stuck after. The EC is at the junction. So we will see how this goes over the next few weeks. Scarey. Cheryl
Update Sept 26. Hubby got really bad after 3 treatments of taxol/cyramza, fevers and very weak. So weak they sent him home with hospice on Aug 8. Last chemo was July 13. After this much time off treatment, hes feeling better. Went back to onc, came off hospice and is starting Keytruda Wed. Might as well be up at bat instead of sitting on the bench. We know that it only works 20-30% of the time on EC, but worth a shot.
I'm so glad you've updated us. I hope your Hubby is one who does really very well on Keytruda without side effects. My fingers and toes are crossed.
Question, I can't find details on any website. I was curious if keytruda initially works for a patient and then fails after a year or so, what is the reason it starts to fail? I understand for chemo, the cancer mutates to grow around the chemo, but for immunotherapy what's the reason? Thanks.
Great question that many of us wish that we knew the answer to. This question is the subject of a LOT of research. There are no clear answers, but I'll share some speculation.
When I was a resident, we were taught about the systems processes employed on airlines to prevent terrible things from happening (and, I write to you from an airplane!) We were taught about a "swiss cheese model" where many things had to go wrong for a plane to crash. Increasingly, I think of cancer the same way. While one mutation may be particularly important (such as EGFR) for a once-healthy cell to go bad and become cancer, fixing that one problem does not cure cancer once it's established (erlotinib may be great, but it doesn't cure). The same is probably true of the immune system. It likely takes multiple immune defects to allow a cancer to grow. Fixing one key defect may help control cancer, but cures remain uncommon. Current therapeutic strategies are focused on T cells, but it is very likely that other components of the immune system are also important. I predict that one day, we will target many aspects of immune failure all at once. And, I predict that we will discuss cure more often than we do now.
Cheryl, Is it ok to start a new thread with this new questioning on the subject of immunotherapy. It will be excellent for so many others but is buried in the rest of your story. What's worked for others in the past is keeping a thread of personal experiences like you've done so far in this thread but when you've got a new question that could be asked by many put it in a new thread so others can find it in a search. I know it's more work on your part but it can be so helpful for so many. If it's OK I'll split the thread off into another.
BTW, I don't think there is an answer to your question yet but I've ask an onc who does research on the subject to comment so we'll see.
Thanks Janine, hope someone can explain as it's interesting to me. Cheryl
These are new agents, and we really just don't yet know the mechanism(s) for acquired resistance. It is likely to be different for different people and cancers, & researchers rarely have the opportunity to study tissue from repeat biopsies after a patient has developed acquired resistance after previously responding well to immunotherapy.
I'm sorry we don't have an answer yet, but of course it's a subject of intense research and clinical interest!
Dr. Howard (Jack) West
Associate Clinical Professor
City of Hope Cancer Center
Founder & President
Global Resource for Advancing
There are 'acquired resistance' mutations to Opdivo/ Keytruda described.
For example, tumor cells may mutate, causing defects in the way they present their proteins to our immune system. These mutations may render the cells resistant to cytokines, or unrecognizable to our T cells. The group at UCLA has described this. This is a big area of research.
Thanks so much for the link and info Dr. Ben. It's very interesting to me, even though I'm a computer programmer this stuff fascinates me.
My husband got his first infusion of Keytruda last week, he did well only slight nausea and chills, plus fair amount of fatigue. I find it strange his dr. did not test for pd-l1 expression in his tumor. I noticed he's Macro Satellite Stable (MSS) and I've been reading that most likely means no pd-l1 expression. Waiting is always the hardest part, scans again after 6 or 9 weeks she was not sure which yet.
I've read a couple of articles on here about to test or not to test and also about pseudo progression. All very informative.
Update: Got scans after 2 keytruda, reports mention good response in liver but also some increased lymph nodes. So mixed report and will continue with 2 more keytruda, scan again in 6 weeks.
Only part of report I don't understand is this wording, can someone explain what it means? Is it indicative of a good or worse response?
"A 22 mm segment 5 lesion has become more cystic, probably indicating that the solid component has undergone further necrosis."
Marching on into 20 months of stage IV. Happy Veterans Day.
For all of the advances of immunotherapy (and there are many) one weakness is that we frequently know less where we stand as compared to when we treat with chemo. Mixed responses (some spots growing and some shrinking) and ambiguous scans are far more common. In my practice when there is ambiguity with immunotherapy, patients who feel well get a shot at staying on immuno in the hopes that it's working; patients who feel poorly are promptly moved off of immuno onto something else. Also, if the possible progression looks "scary" to me for causing harm, I'm more likely to switch, while if it looks low probability for causing harm if it grows more, I'm more comfortable continuing the immuno. "Cystic" means fluid filled and "necrosis" means dead cancer. It can be good or bad. It's good in the sense that we want the cancer to die and the death could be due to effective treatment. On the other hand, sometimes cancer grows so quickly that it outgrows its blood supply and dies as a cause of that. So, this is all explanation of the ambiguity. I hope that time proves that good things are happening!
Thanks so much Dr. Weiss for the explanation and information. I really appreciate your time and this site. It will be very interesting to follow my husband's response with keytruda as he has not been tested for PD-L1, although his tumor is reported as MSS and I understand that could mean less likely to have PD-L1. I'm going to ask his onc at MGH what they think about adding a MEK inhibitor because I've read about a study on MSS paitients where that can boost response. :).
Update Dec 15, 2016 - Hubby feels pretty good, completed 4 keytruda now. Still no pain, no nausea. However having increased difficulty eating, lots of mucus builds and he has to choke it out. A few times it sounded like he is drowning in it. Got scans yesterday, won't see dr till Monday. I looked at scans and it seems to me his liver looks really good, nice response. But something new is showing up in esophagus that was not in any prior scan. Maybe it's just the mucus in there.
Question is, can keytruda have mixed results with one area showing response and another area obvious progression or new growth?
The waiting is hard. Thanks.
I'm glad to hear that your husband is generally feeling well, and that he appears to have had a good response in the liver. I hope that your meeting with the oncologist confirms your impression. Although it is possible to have a "mixed response" to treatment, a buildup of mucus can appear on a CT, so hopefully that's all it is. You might want to check with his doctor, but over-the-counter Mucinex (or a generic equivalent) may help break up that mucus and provide some relief.
Many of us have experienced the anxiety of waiting for scan results, so we understand just how you are feeling. I hope that you get great results on Monday.
Update 12/22/16:. Met with onc on Monday who gave us great news that hubbys tumors have shrank in liver and some have disappeared. In esophagus, tumor is same size but showing signs of necrosis. All excellent news, onto 3 more keytruda and scan in 9 weeks.
On Tue night all of a sudden he started throwing up huge amounts of water and mucus for 9 hrs straight. Turns out he became blocked, was having increasing issues eating anyways. So now he has a stent in place. Recovering from that and will see how eating goes in a few days.
Merry Christmas folks.
Dang Cheryl, Good news with what sounds like a disturbing bump in the road. Hopefully the stent will keep his esophagus open for good. Sometimes dying tumors cause there own set of issues. I'm so so sorry ya'll are going through this during the holidays. Cancer is such a bully.
I have a feeling you and your husband will find many opportunities to have happiness in the days to come...hope.
Great news on the shrinking and stability!!!
Keeping you both in my thoughts.
Thanx Janine. I'm very shocked because he's not been tested for pd-l1. Also he's MSS and from what I read that means less likely to be pd-l1 positive. Only worried how long the keytruda will keep things going this way, like the folfox that stopped working at about 10 months, I'm expecting this will stop working as well. Who knows what other new something might be out by then though. It's like a crazy race. Merry Christmas!
It is, like a crazy race. One that winners move as slow as possible. My money in on Hubby!
Merry Christmas with warm hugs!
Hello, quick question about alk phos level. Hubbys kept rising last summer, lo and behold he ended up with mets to liver. New chemo didn't work began keytruda, alk phos dropped quite a bit but it's again rising and is higher than last summer. Just curious is a rise in alk phos normal when liver is responding to keytruda? Thanks!
A look at the Keytruda prescribing information shows that about 28% of patients had elevated alk phos (see the chart at the top of page 13). So it's not necessarily an indication of progression in the liver, but likely a rise due to the Keytruda itself.
Alkaline phosphatase is a very non-specific marker. Causes of elevation (or fall when these factors are relieved) include: blockage of bile ducts in the liver (sometimes due to cancer, sometimes to other causes) and bone turnover (sometimes due to cancer, sometimes due to other causes). Changes in alk phos can sometimes suggest a new problem, but can never confirm it. Elevation of liver inflammation enzymes such as AST, ALT, and Alkphos are common with keytruda. When not very elevated, these can typically be monitored.
Thanks for the info. Noting increased fatigue past few weeks. Alk phos has risen again, guess we will find out for sure if it's due to progression or not with scans on Feb 14. Hopefully it's going up due to keytruda itself. Always concerned.
Keeping fingers and toes crossed for good scans. I'm so sorry you're on "always concerned" status but very understandable.
Well well, since hubby has been so tired, I asked his onc to test his thyroid. Lo and behold his TSH is thru the roof at 47+ and is now on thyroid med. I was reading that keytruda can cause issues with thyroid. Now I wonder will it be permanent or not. Hopefully he will feel better in a few weeks when this med kicks in.
So glad that was just a bump in the road and you were there to get it looked at. I too have read immunos can cause thyroid irregularities. If the thyroid problem can be managed with meds and the immunotherapy otherwise keeps the cancer at bay then YAHOO! Your husband is lucky to have you on the front line of his care. I imagine/hope you know how important a role you play in his life. I'm sure he does.
Take care of yourself, easy to say but difficult to pull off when you're in the trenches, I know. Keep people close who can help out including taking you out for a good time. I can imagine a pedicure would do wonders.
Thanks for the kind words Janine. Funny you mention a pedicure, I have never had one in my life. But hubby just came back from one as he likes them. lol I'm assuming his body will take a while to rebound from the low thyroid and for the supplement to work. Hoping his energy comes back. Next milestone will be scans in middle of Feb. End of March marks 2 years with EC. Long road, but looking at your hubby, I see an even longer road with you guys. Just amazing.
Hi, just got back from latest scans. Hubby has had 7 Keytruda now and is due #8 on Friday. I'm the wannabe radiologist and I see continued response in Hubby's liver tumors. I can't tell what's going on with esophagus because this is first scan with stent in place so hard to compare to last ones.
However, I believe I see possible pleural effusion in one lung. Can keytruda be working well but cause this issue? If so, what can be done?
I hope you are right about the response. The appearance or increase in size of a pleural effusion, by itself, is not considered firm evidence of progression. Some patients have contnuing problems with recurring effusions even in the face of tumor response.
If the effusion is small and asymptomatic, your husband's oncologist may want to watch and wait to see if it reduces in size, or at some point it might need to be drained. If it continues to recur, there is also the possibility of a pleurodesis, in which a substance such as talc is inserted into the pleural space, causing the inner and outer layers of the pleura to adhere to each other, preventing further fluid accumulation.
Hopefully it's a good report all around, with no need to address an effusion.
Written reports are in, there are pleural effusions in both lungs. What gets me is apparently 2 diff radiologists read his scans.
The one who read chest CT, reports; Circumferential thickening of the distal esophageal wall extending into the gastric cardia, with apparent increased size of posterior tumor bulk at the GE junction.
The one who read abdomen, reports; Distal esophageal mass is overall unchanged accounting for interval placement of a stent traversing the gastroesophageal.
Which is it, increased size or unchanged? Ugh.
Also read this; Of note, there is loss of the fat plane between the mass and the aorta. Looking online to see what this means, it could signal aortic invasion? If so, sounds scary.
They will scan again at 6 weeks from last one.
Such a tough ride.. keytruda #9 coming up the 13th.
Update 05/21/17. Hubby losing weight, down to 135 from 225 2 yrs ago. Also seems to be slowing down physically, I've had to take over the few chores he was doing and have to help with his clothes and use wheel chair at hospital. Mentally he's really struggling, they changed antidepressant to Zoloft. Needed stent cleaned in March, had another scope Friday where they cauterized some tissue growing in but said things look stable. Won't get CT scans again till 2nd week in June. Dr thought based on his presentation that perhaps keytruda might not be working much longer, gave him option of keeping going or not, he chose to keep going for now has had 11 of them. So we march on for now #12 may 31, then scans 2 weeks after that. Hoping to enjoy some spring.