This is long but need suggestions Please!

marlin307 · November 2017

Hi everyone!

My mother in law, age 62, was diagnosed w/ stage IV adenocarcinoma EC that has metastisized to liver, lesion on a lung, L2 in lumbar, lymph nodes. She gradually started having difficulty swallowing starting in June of this year but she said it didn't concern her because her dad and a sister have a condition that causes spasms and they will have problems swallowing. Starting in August she was feeling worse, losing weight and by early Sept she began to develop pain to the right upper side of her abdomen that would last up to a week after eating meat and then was concerned enough to see her primary doctor. He ran blood work on her which showed her liver enzymes only slightly off and if I remember correctly everything else was fine. He referred her to a gastroenterologist for endoscopy. We live in a smaller town and we are limited on the number of specialist we have so it was her appointment was going to be a month out from all that. By the end of October she had told by husband she was feeling so bad she didn't think she would make it to that appointment and she is not one to complain about anything. The next day she was at work, and thank God she works at a hospital, she was eating pancakes for breakfast and couldn't swallow it at all and was vomiting. Her co-workers knew this had been going on and noticed her weight loss and literally grabbed her by the hand and drug her to the ER. There they did a CT scan and told her that she had cancer everywhere. She was admitted to the hospital. They did a liver biopsy and the endoscopy. She has a large tumor to her lower part of the esophagus and the doctor was able to dilate slightly to help with swallowing and did a biopsy on the tumor.

Now since we live in a smaller town and limited on specialists, they are always overbooked. As a nurse, I feel the quality of care with the specialists, the technology, and overall knowledge of advancements is just not nearly the same as in larger cities. We are only 2 hour drive to Houston, TX which has some of the best medical care known. But since she works at a local hospital and the insurance, she wanted to see what 1 of the 2 oncologists here had to offer.

On 11/1, my husband, brother in law, and myself went with her to meet with the oncologist here in town. Her appointment was at 3. Other patients in the waiting room were saying that the wait is always so long to get called back that you better pack a lunch/snack and something to occupy your time. Sure enough she was called to the back close to 5pm. When the doctor came to the room, it appeared that he had not reviewed any files prior to the appointment and was looking at it for the first time there. He told her it was stage IV EC, talked about the metasis, and told her without treatment life expectancy is average 6months and with treatment averge is 1 year. He then brings up a website with the latest treatment recommendations, goes through a flow chart of what her symptoms are to come down to what kind of treatment options there are. He said he recommends starting an oxalplatin and went over how often treatment is, side effects and why he chooses that over a cisplatin. At this time there were not results on HER2, and only discussed if it was positive he would add another drug on top of the oxalplatin. Brother in law asked about natural, organic treatments she could do on her own to go with the chemo such as tumeric capsules, a turkey tail mushroom(?), etc.... The doctor said he doesn't like anything being added outside the chemo because if there is a reaction is it from the chemo or the organic stuff. Regarding nutrition, he just said let her eat whatever she wants for the calories. BIL is against all that and BIL asked about more of a green diet, less sugar, alkaline diet, etc. The dr said could but since she already had problems swallowing and then when starting chemo and not going to have an appetite, he just wants her to eat whatever she wants. All in all the 3 of us were not impressed with what was said, we took that there's no hope so just do whatever you want and we'll give you chemo to help you live slightly longer. (My husband and I know there's no cure for this stage, but we felt like most of it was horrible advice. Now BIL and his wife feel there's a cure if she does organic, holistic stuff w/ the chemo). Mother of course is scared and wants to start treatment as quickly as possible. So this doctor set up appointment for PET scan, port placement 11/10, MRI for 11/13 and to start chemo 11/14. I asked the nurse practioner in the office about having an oncology team and they do not have that. We did convince her to get a second opinion from MD Anderson in Houston.

The results from the MRI showed that it had not metastisized to the brain, but it had to liver, lesion on a lung, in L2 lumbar and lymph nodes. She had port placed and then the day she went to have her chemo treatment, the person who handles insurance in the doctor's office had quit and had not gotten preauthorization for the chemo and did not tell anyone. She sat in the waiting room for 2 hours before they told her anything.

This past Wednesday was the MD Anderson appointment. This doctor was open to natural supplements as long as not in a capsule form or liquid extracts where it would be a concentrated form but mom is scared after what the other doctor told her. MD Anderson doctor went over a better nutrition plan for her. Suggested if she wants a chocolate milkshake that it's fine but maybe trying adding protein powder to it to help get nutrition out of it, she discussed different ways to make health punched smoothies, smaller frequent meals, try to make healthier food choices when given the option but at the same time eat what she can. She said she would start with a similar treatment the other doctor suggested. But she would add taxotere for 2 months to jump start and then switch to folfox. She said more than half of her patients show no progression in cancer with this plan on the 1st scan. She suggested w/ the holidays approaching and the doctor here doing a very similar treament plan, to go ahead and start here and then after the first of the year before her 5th cycle, to go back to MD Anderson for her 1st scans. She said if things look good to cont treatment here and if not she definitely wants her to start going there and look at different options. She said in that case they could do test to see if she would qualify for clinical trials and to see if she would qualify for immunotherapy. She emphasized to mom that life expectancy varies from each person and she has patients w/ her diagnosis who over a 2 year mark, also depends on how much she wants to fight and take care of her body as well. At MD Anderson she would be set up w/ a case worker, dietician, on call staff. Everyone was very pleased with this doctor and feel more optmistic about her receiving, how we all feel, better care. But she does start her first treatment here Monday the 20th.

My husband and I went by this evening to go visit with her. She was complaining of feeling nauseated and weak all day. She said normally she can eat a little something and she'll feel better but not today. She tried peppermints, lemon drops and some kind of wrist band things to help with nausea but she said nothing worked. She said the BIL has made her smoothies and bought organic protein to add but everything he's made, she doesn't like. She looks like she's lost more weight since Wednesday. A case worker w/ her insurance called her today and told her they will not cover MD Anderson if she can have treatment here.

So now knowing the story, I'd like to get some information from people who have already experienced all this, so I can share with her for some hope, advice from people actually experiencing what she's going through she can try versus what a doctor from the outside tells her.

1. Have you or any loved ones used this same treatment plan?

A. What kind of side effects were experienced? Was there anything that helped you relieve the effects?

B. Was treatment shown effective after first scan? If not, what were the next options and what was chosen?

C. How long were treatments at a time? (she's supposed to wear a pump for 48 hours but they told her first time she would be there for over 2 hours)

2. For anyone w/ EC: How do you relieve nausea?

3. Do you or your loved one use any organic supplements? If so, what kind? How do you think it helps?

4. What works best for you or your loved one for nutrtion?

A. If a feeding tube is used, at what point was that an option? (hasn't even been discussed by either doctor)

5. What is the stance on cannibis?

6. Any other advice or suggestions you have for her that I couldn't think to ask?

Thank you in advance for taking the time to read all of this and for any advice. She's greatly loved and we want to have as many options available to help provide comfort, support and hopefully more longevity for her.

Blessings everyone,

Stefanie

Deathorglory · November 2017

Hello Stefanie

Hello Stefanie,

So sorry to hear about your MIL. Sounds like she's in a really bad spot. I think you guys are doing right by her to take her to Houston. EC, especially stage IV, is major big deal stuff and should be treated by experienced doctors at a quality cancer center. MDA provides that, and it sounds like your local hospital doesn't. This is a very common situation folks find themselves in, but not everyone does what you guys are doing to give themselves the best chance. MDA has access to trials that she can't get at the hospital down the street. It also will have doctors who deal with EC for a living and are more able to monitor and effectively deal with side effects (folfox has a lot and some are severe).

I've had two go-arounds with EC, the 1st time was in 2008 and I was stage III. The 2nd time was 2011 and I was stage IV with a recurrence in a lung. I was given a 7-8 month prognosis and told that I should get my affairs in order sooner, not later. I know how hard it hits to be told that, but I also appreciated my doctor being upfront with me. I'd rather know what I'm dealing with. I live in the Philadelphia area and have access to several high quality cancer centers, so I knew I was going to get great care. I was initially told my treatment would be folfox with the option of adding a clinical trial. Then my HER2 test came back positive and I replaced the trial with herceptin. Long story short, the folfox & herceptin worked wonderfully and I'm testing clean six years later.

I want to make sure I address your questions so I'll do that now, and then ramble later if I need to.

1. As I mentioned above, folfox has some severe side effects. The neuropathy and cold sensitivity are the most widely known. Everything cold will hurt. Picking up something from the fridge/freezer may well require gloves. I describe drinking something cold as having your mouth/throat turn to a sheet of ice and then shatter. The neuropathy left my hands and feet numb and tingling. The neuropathy and cold sensitivity gradually wore off during the two weeks between folfox treatments. By the 12th time it took all 14 days for the effects to wear off. After the 12th round, some of the neuropathy was permanent. My hands are still a little numb and my feet are very numb and tingly. Most folks don't go through all 12 rounds, though because of the side effects. I also got VERY weak. It got to the point where I fell down a few times and a couple of other times I just passed out/fainted. There were times I had to crawl to the bathroom, hoping I could crawl fast enough to make it there in time. Everyone who knew me (wife, mother, sisters, etc...) thought I was going to die and soon by the time I was finished. Turned out it was just the chemo working and working well. I didn't get another PET/CT scan during treatment to monitor it. I got one a few weeks after treatment ended and it showed a complete response. I don't remember exactly how long each infusion lasted. I'll guess at about six hours (but I got herceptin also which added a little bit). Two hours may be just for the taxotere, with folfox lasting longer. Then there was the two day fanny pack of 5 FU. I refused to skip showering for two days, so I wrapped my shoulder/chest in saran wrap, hung the pump on the curtain rod, and tried to keep it as dry as I could.

2. My oncologist was 100% on top of nausea. I took a bunch of different meds for that. I want to say four different meds, but I can't remember what they were. I really didn't have nausea before treatment and she managed it perfectly so I didn't have that side effect from chemo either.

3. I'm not a big believer in organic/holistic/alernative treatments for anything other than their psychic benefits. If any of them actually worked, every doctor out there would be recommending them. I just think that the universe of professional oncologists is smarter than some random guy who read something on the internet. That said, I did practice some voodoo myself (with my doctor's approval, of course). I drank lots of tea for the antioxidants. Put LOTS of lemon in the tea for the vitamin C. Read somewhere that garlic could be helpful, so I cooked with a ton of fresh garlic. My oncologist read somewhere that aspirin could be beneficial, so I took an aspirin a day. I don't know that any of these things were of any good, but it made me feel like I was in control of doing something to help myself. And I think that's the actual benefit of those alternative things.

4. As far as nutrition goes, I wouldn't recommend following my path. I can be a bit of a maniac. I wasn't going to let cancer dictate my diet to me. I was going to eat whatever I wanted, cancer be damned. One (of many) example is I drank cold drinks during the folfox treatments (that's how I know it feels like your throat is iced and then shattered.) There is another thread here, just a few down from this one that deals with an EC diet and nutrition. It's by Loretta Marshall. It's from November 10th and called "Post Esophajectomy diet". It's worth your time to read it.

5. I have no personal experience with cannabis or medical marijuana, but there are a lot of folks who swear by its positive effects on nausea, pain, appetite and anxiety. If you're interested I'd definitely say give it a try. There's a thread a little below yours called "Touchy topic, Medical Marijuana" It's by JimboC and it's from January 3, 2012. It has a lot of folks' 1st person experiences and thoughts.

6. One thing I'd like to suggest to you comes from your description of your family. It seems there might be some conflict between what the different family members think is best. Fist, foremost, in fact the only thing that matters is what your MIL wants (if she doesn't want smoothies with organic protein etc..., then that's that, no further discussion). Everyone is entitled to their thoughts, but your MIL is the final decisionmaker. I'd suggest putting that idea out there to the family. It can be hard, because everyone wants what's best for her, but she's the one & only captain on this ship. Everyone needs to know and respect that.

Another idea I'd like to put out there is to not quit. I'm walking, talking proof that being given a stage IV diagnosis with a few months of life expectancy doesn't mean you're actually going to die in a few months. At 40, I had a 15% chance of surviving five years. At 44 I was told that "from where you are, most people live 7 or 8 months, some a couple months more, some a couple months less. And there have been one or two people who have had a complete response." Not one or two percent, just one ot two total. Well, now there's two or three of us. I'm now 50 and still testing clean. Don't quit.

Best wishes to you MIL & your family,

Ed

marlin307 · November 2017

Deathorglory said:
Hello Stefanie
Hello Stefanie,

So sorry to hear about your MIL. Sounds like she's in a really bad spot. I think you guys are doing right by her to take her to Houston. EC, especially stage IV, is major big deal stuff and should be treated by experienced doctors at a quality cancer center. MDA provides that, and it sounds like your local hospital doesn't. This is a very common situation folks find themselves in, but not everyone does what you guys are doing to give themselves the best chance. MDA has access to trials that she can't get at the hospital down the street. It also will have doctors who deal with EC for a living and are more able to monitor and effectively deal with side effects (folfox has a lot and some are severe).

I've had two go-arounds with EC, the 1st time was in 2008 and I was stage III. The 2nd time was 2011 and I was stage IV with a recurrence in a lung. I was given a 7-8 month prognosis and told that I should get my affairs in order sooner, not later. I know how hard it hits to be told that, but I also appreciated my doctor being upfront with me. I'd rather know what I'm dealing with. I live in the Philadelphia area and have access to several high quality cancer centers, so I knew I was going to get great care. I was initially told my treatment would be folfox with the option of adding a clinical trial. Then my HER2 test came back positive and I replaced the trial with herceptin. Long story short, the folfox & herceptin worked wonderfully and I'm testing clean six years later.

I want to make sure I address your questions so I'll do that now, and then ramble later if I need to.

1. As I mentioned above, folfox has some severe side effects. The neuropathy and cold sensitivity are the most widely known. Everything cold will hurt. Picking up something from the fridge/freezer may well require gloves. I describe drinking something cold as having your mouth/throat turn to a sheet of ice and then shatter. The neuropathy left my hands and feet numb and tingling. The neuropathy and cold sensitivity gradually wore off during the two weeks between folfox treatments. By the 12th time it took all 14 days for the effects to wear off. After the 12th round, some of the neuropathy was permanent. My hands are still a little numb and my feet are very numb and tingly. Most folks don't go through all 12 rounds, though because of the side effects. I also got VERY weak. It got to the point where I fell down a few times and a couple of other times I just passed out/fainted. There were times I had to crawl to the bathroom, hoping I could crawl fast enough to make it there in time. Everyone who knew me (wife, mother, sisters, etc...) thought I was going to die and soon by the time I was finished. Turned out it was just the chemo working and working well. I didn't get another PET/CT scan during treatment to monitor it. I got one a few weeks after treatment ended and it showed a complete response. I don't remember exactly how long each infusion lasted. I'll guess at about six hours (but I got herceptin also which added a little bit). Two hours may be just for the taxotere, with folfox lasting longer. Then there was the two day fanny pack of 5 FU. I refused to skip showering for two days, so I wrapped my shoulder/chest in saran wrap, hung the pump on the curtain rod, and tried to keep it as dry as I could.

2. My oncologist was 100% on top of nausea. I took a bunch of different meds for that. I want to say four different meds, but I can't remember what they were. I really didn't have nausea before treatment and she managed it perfectly so I didn't have that side effect from chemo either.

3. I'm not a big believer in organic/holistic/alernative treatments for anything other than their psychic benefits. If any of them actually worked, every doctor out there would be recommending them. I just think that the universe of professional oncologists is smarter than some random guy who read something on the internet. That said, I did practice some voodoo myself (with my doctor's approval, of course). I drank lots of tea for the antioxidants. Put LOTS of lemon in the tea for the vitamin C. Read somewhere that garlic could be helpful, so I cooked with a ton of fresh garlic. My oncologist read somewhere that aspirin could be beneficial, so I took an aspirin a day. I don't know that any of these things were of any good, but it made me feel like I was in control of doing something to help myself. And I think that's the actual benefit of those alternative things.

4. As far as nutrition goes, I wouldn't recommend following my path. I can be a bit of a maniac. I wasn't going to let cancer dictate my diet to me. I was going to eat whatever I wanted, cancer be damned. One (of many) example is I drank cold drinks during the folfox treatments (that's how I know it feels like your throat is iced and then shattered.) There is another thread here, just a few down from this one that deals with an EC diet and nutrition. It's by Loretta Marshall. It's from November 10th and called "Post Esophajectomy diet". It's worth your time to read it.

5. I have no personal experience with cannabis or medical marijuana, but there are a lot of folks who swear by its positive effects on nausea, pain, appetite and anxiety. If you're interested I'd definitely say give it a try. There's a thread a little below yours called "Touchy topic, Medical Marijuana" It's by JimboC and it's from January 3, 2012. It has a lot of folks' 1st person experiences and thoughts.

6. One thing I'd like to suggest to you comes from your description of your family. It seems there might be some conflict between what the different family members think is best. Fist, foremost, in fact the only thing that matters is what your MIL wants (if she doesn't want smoothies with organic protein etc..., then that's that, no further discussion). Everyone is entitled to their thoughts, but your MIL is the final decisionmaker. I'd suggest putting that idea out there to the family. It can be hard, because everyone wants what's best for her, but she's the one & only captain on this ship. Everyone needs to know and respect that.

Another idea I'd like to put out there is to not quit. I'm walking, talking proof that being given a stage IV diagnosis with a few months of life expectancy doesn't mean you're actually going to die in a few months. At 40, I had a 15% chance of surviving five years. At 44 I was told that "from where you are, most people live 7 or 8 months, some a couple months more, some a couple months less. And there have been one or two people who have had a complete response." Not one or two percent, just one ot two total. Well, now there's two or three of us. I'm now 50 and still testing clean. Don't quit.

Best wishes to you MIL & your family,

Ed

thank you

Hi Ed,

Thank you for your response. I'm just in awe that you're living proof you can beat the odds.

Family, yes, definitely conflict. My husband and I are all for letting her make her own decisions. I went with her when the port was placed. She was telling me BIL and SIL made her a healthy dinner night before and it was good but he had made a comment about her drinking a chocolate milkshake. Like I said previously, she doesn't complain much. She doesn't want to hurt their feelings and she has tried to tell them but they keep insisting. I told her that day I was concerned she wasn't going to be allowed to have a voice in her own care and she says "I know".

I agree with you on the organic holistic approach. I'm a registered nurse, but I work neonatology. I have enough understanding that herbs and spices are not enough. Maybe there's slight benefits to something there but I feel it's not worth the risk when you go to one of the best cancer centers in America and even they are not all in.

So, the side effects... I'm really worried now. She's already rapidly declining and definitely weaker than only Wednesday and she hasn't even started treatment yet. My husband and I have been talking about buying a bigger house with 4 bedrooms since before this happened. Now it's accelerated so we can have room for her when she needs it or if she would want it. She said last night when we were talking about the house we put an offer on, that she doesn't think she can do it on her own much longer. Just Wednesday, she told us not to buy bigger because of her. So then we were showing her pics of the room that would be hers and she was already talking about what colors she would like to pain the room and she wants calming colors in there.

I hate this. They've been through so much as a family in general. My husband's dad contracted Hep C from a blood transfusion when my husband was 3. Had a kidney transplant and died 10yrs later when my husband was 20. She was by his side through everything and took care of him all that time.

Moving on.... thank you again for your help. I found this forum last night and would love to stay on here to keep yall updated.

Zzdunne · November 2017

what a wonderful daughter in law!

Hello Stefanie....first up, what a wonderful DIL you are. Your MIL is so lucky to have you and your husband on her side.

Summary of our story. My husband Mike (then 60) was diagnosed in August 2016. As his EC had not metastisised (yet) he underwent 6 weeks of chemo/radiatiation before an Esophagectomy in November, 2016. One of the lymph nodes removed tested positive so he was in the process of enrolling for a clinical trial of immunotherapy when scanning in February showed it had already metastisised to his liver with multiple lesions. He was no longer eligible for the trial as now stage 4. We have a leading Oncologist here in Sydney and he immediately started Mike on Folfox ( Mike tested negative for HER2 so did not have Herceptin added). Mike had 9 out of the possible 12 Folfox infusions. These were stopped because the side effects (neuropathy and generally feeling awful) were no longer justified in our Oncologists view. The initial benefit from Folfox had tapered off and he was only a partial responder. He then had a tablet form of the 5FU ( the drug delivered via the 48 hour pump) called Xeloda which can be used as maintenance and hold the tumours at bay. He had 3 rounds of this, over 9 weeks, but rescanning showed it didn't work and the disease had progressed. He is now on the immunotherapy drug Keytruda (off label). Enjoying very much being off chemo and feeling better than he has since the operation but we won't know until the end of December if the Keytruda is working.

As Mike never had symptoms from the original site and there has been no recurrance in the Esophagus, his eating issues were related to the Esophagectomy and then the chemo, rather than the tumour as is the case for your poor MIL. He lost a lot of weight (154 lbs after the operation down to a low of 121 at the end of chemo) which stabilised with the help of a good dietician and has now gained a few pounds. So even though the eating issues are different for your MIL you may find our experience useful. I have answered your questions below

1. yes - Folfox for 9 rounds including the 48 hr pump. From memory Mike was rescanned after 2 months which showed a good response. Another 2 month scan showed more response but reduced. 3rd scan showed no further reduction.

As was the case with Ed, Mikes Oncologist prescribed heavy duty anti-nausea meds given before and with the chemo so this was not a big issue. See response to 2 below.

He had some peripheral Neuropathy ( feet) but his main issue with Folfox was just feeling progressively more awful. Like having the flu as far as I could tell

2. For anyone w/ EC: How do you relieve nausea? He had Ondansetron to use at home when necessary but didn't need it much. From a previous bad experience post-Esophagectomy we knew he could not take Maxalon (Metoclopramide) which is also often prescribed.
His nausea was closely linked to bowel movements...any hint of constipation triggered nausea

3. Do you or your loved one use any organic supplements? If so, what kind? How do you think it helps? We used a multi vitamin and tried to maintain good nutritian through food and some nutrician supplements. I tried to force the green smoothies prior to the Esophagectomy but these made him so unhappy these were not resumed when he came home from hospital. As we are a family steeped in science and medicine we are sceptical about the benefit of supplements other than as a food replacement when necessary.

4. What works best for you or your loved one for nutrtion? We saw a few different dieticians over the past year and I would strongly suggest you try to find one who is familiar with EC and especially Folfox or chemo in general. Main recommendations from ours was to make every mouthful count and concentrate on what you can tolerate, with a high emphasis on protein to prevent muscle wastage. Because of the Esophagectomy Mike had issues with sugar ( a common problem) but as your MIL will not have the same problem adding protein powder to milkshakes would be a great idea. Scrambled eggs, adding cheese and even melted butter to vegetables is all good for protein and calories. Mike had to resort to some foul tasting drink supplements which he would sip throughout the day during the many months where he had no appetite and this helped stabilise his weight. As soon as his appetited returned these were abandoned in favour of real food. Again....small, high protein meals. For the first time in my life I knew the calories in just about every food item that came into the house. To be honest - the whole eating thing threatened to become a big issue and as a carer I needed to back off on my initially constant attempts to get him to eat and just provide support, a reminder to eat, and prepare whatever food he expressed any interest in. There were many months where no food was welcomed....and we are a big foodie household

A. If a feeding tube is used, at what point was that an option? (hasn't even been discussed by either doctor), Mike only had this in hospital and for about a week after. He did not have issues caused by the Esophageal tumour like your MIL

5. What is the stance on cannibis? In Australia its hard to get and the main issues it can help with (nausea, mood, pain relief) we have had other drugs that have worked well.

6. Any other advice or suggestions you have for her that I couldn't think to ask? Try to keep your MIL as hydrated as possible.....Mike has water or diluted fruit juice throughout the day This has been an ongoing battle as he was never much of a water drinker but understands how important it is with chemo and well being in general. Make sure they follow through on the HER2 testing in the hope that Herceptin can be added to the folfox regime.

Good luck Stefanie and please let me know if I can help with any further information. Just being there and letting your mother in law know she is loved may be all you can do....but that is so much.

Janine

marlin307 · November 2017

Zzdunne said:
what a wonderful daughter in law!
Hello Stefanie....first up, what a wonderful DIL you are. Your MIL is so lucky to have you and your husband on her side.

Summary of our story. My husband Mike (then 60) was diagnosed in August 2016. As his EC had not metastisised (yet) he underwent 6 weeks of chemo/radiatiation before an Esophagectomy in November, 2016. One of the lymph nodes removed tested positive so he was in the process of enrolling for a clinical trial of immunotherapy when scanning in February showed it had already metastisised to his liver with multiple lesions. He was no longer eligible for the trial as now stage 4. We have a leading Oncologist here in Sydney and he immediately started Mike on Folfox ( Mike tested negative for HER2 so did not have Herceptin added). Mike had 9 out of the possible 12 Folfox infusions. These were stopped because the side effects (neuropathy and generally feeling awful) were no longer justified in our Oncologists view. The initial benefit from Folfox had tapered off and he was only a partial responder. He then had a tablet form of the 5FU ( the drug delivered via the 48 hour pump) called Xeloda which can be used as maintenance and hold the tumours at bay. He had 3 rounds of this, over 9 weeks, but rescanning showed it didn't work and the disease had progressed. He is now on the immunotherapy drug Keytruda (off label). Enjoying very much being off chemo and feeling better than he has since the operation but we won't know until the end of December if the Keytruda is working.

As Mike never had symptoms from the original site and there has been no recurrance in the Esophagus, his eating issues were related to the Esophagectomy and then the chemo, rather than the tumour as is the case for your poor MIL. He lost a lot of weight (154 lbs after the operation down to a low of 121 at the end of chemo) which stabilised with the help of a good dietician and has now gained a few pounds. So even though the eating issues are different for your MIL you may find our experience useful. I have answered your questions below

1. yes - Folfox for 9 rounds including the 48 hr pump. From memory Mike was rescanned after 2 months which showed a good response. Another 2 month scan showed more response but reduced. 3rd scan showed no further reduction.

As was the case with Ed, Mikes Oncologist prescribed heavy duty anti-nausea meds given before and with the chemo so this was not a big issue. See response to 2 below.

He had some peripheral Neuropathy ( feet) but his main issue with Folfox was just feeling progressively more awful. Like having the flu as far as I could tell

2. For anyone w/ EC: How do you relieve nausea? He had Ondansetron to use at home when necessary but didn't need it much. From a previous bad experience post-Esophagectomy we knew he could not take Maxalon (Metoclopramide) which is also often prescribed.
His nausea was closely linked to bowel movements...any hint of constipation triggered nausea

3. Do you or your loved one use any organic supplements? If so, what kind? How do you think it helps? We used a multi vitamin and tried to maintain good nutritian through food and some nutrician supplements. I tried to force the green smoothies prior to the Esophagectomy but these made him so unhappy these were not resumed when he came home from hospital. As we are a family steeped in science and medicine we are sceptical about the benefit of supplements other than as a food replacement when necessary.

4. What works best for you or your loved one for nutrtion? We saw a few different dieticians over the past year and I would strongly suggest you try to find one who is familiar with EC and especially Folfox or chemo in general. Main recommendations from ours was to make every mouthful count and concentrate on what you can tolerate, with a high emphasis on protein to prevent muscle wastage. Because of the Esophagectomy Mike had issues with sugar ( a common problem) but as your MIL will not have the same problem adding protein powder to milkshakes would be a great idea. Scrambled eggs, adding cheese and even melted butter to vegetables is all good for protein and calories. Mike had to resort to some foul tasting drink supplements which he would sip throughout the day during the many months where he had no appetite and this helped stabilise his weight. As soon as his appetited returned these were abandoned in favour of real food. Again....small, high protein meals. For the first time in my life I knew the calories in just about every food item that came into the house. To be honest - the whole eating thing threatened to become a big issue and as a carer I needed to back off on my initially constant attempts to get him to eat and just provide support, a reminder to eat, and prepare whatever food he expressed any interest in. There were many months where no food was welcomed....and we are a big foodie household

A. If a feeding tube is used, at what point was that an option? (hasn't even been discussed by either doctor), Mike only had this in hospital and for about a week after. He did not have issues caused by the Esophageal tumour like your MIL

5. What is the stance on cannibis? In Australia its hard to get and the main issues it can help with (nausea, mood, pain relief) we have had other drugs that have worked well.

6. Any other advice or suggestions you have for her that I couldn't think to ask? Try to keep your MIL as hydrated as possible.....Mike has water or diluted fruit juice throughout the day This has been an ongoing battle as he was never much of a water drinker but understands how important it is with chemo and well being in general. Make sure they follow through on the HER2 testing in the hope that Herceptin can be added to the folfox regime.

Good luck Stefanie and please let me know if I can help with any further information. Just being there and letting your mother in law know she is loved may be all you can do....but that is so much.

Janine

Thank you for sharing and for

Thank you for sharing and for the advice. I've been sharing with her what I've been sent off of here and it seems to help her to hear from people with experience in this.

CancerEclipse · February 2018

Deathorglory said:
Hello Stefanie
Hello Stefanie,

So sorry to hear about your MIL. Sounds like she's in a really bad spot. I think you guys are doing right by her to take her to Houston. EC, especially stage IV, is major big deal stuff and should be treated by experienced doctors at a quality cancer center. MDA provides that, and it sounds like your local hospital doesn't. This is a very common situation folks find themselves in, but not everyone does what you guys are doing to give themselves the best chance. MDA has access to trials that she can't get at the hospital down the street. It also will have doctors who deal with EC for a living and are more able to monitor and effectively deal with side effects (folfox has a lot and some are severe).

I've had two go-arounds with EC, the 1st time was in 2008 and I was stage III. The 2nd time was 2011 and I was stage IV with a recurrence in a lung. I was given a 7-8 month prognosis and told that I should get my affairs in order sooner, not later. I know how hard it hits to be told that, but I also appreciated my doctor being upfront with me. I'd rather know what I'm dealing with. I live in the Philadelphia area and have access to several high quality cancer centers, so I knew I was going to get great care. I was initially told my treatment would be folfox with the option of adding a clinical trial. Then my HER2 test came back positive and I replaced the trial with herceptin. Long story short, the folfox & herceptin worked wonderfully and I'm testing clean six years later.

I want to make sure I address your questions so I'll do that now, and then ramble later if I need to.

1. As I mentioned above, folfox has some severe side effects. The neuropathy and cold sensitivity are the most widely known. Everything cold will hurt. Picking up something from the fridge/freezer may well require gloves. I describe drinking something cold as having your mouth/throat turn to a sheet of ice and then shatter. The neuropathy left my hands and feet numb and tingling. The neuropathy and cold sensitivity gradually wore off during the two weeks between folfox treatments. By the 12th time it took all 14 days for the effects to wear off. After the 12th round, some of the neuropathy was permanent. My hands are still a little numb and my feet are very numb and tingly. Most folks don't go through all 12 rounds, though because of the side effects. I also got VERY weak. It got to the point where I fell down a few times and a couple of other times I just passed out/fainted. There were times I had to crawl to the bathroom, hoping I could crawl fast enough to make it there in time. Everyone who knew me (wife, mother, sisters, etc...) thought I was going to die and soon by the time I was finished. Turned out it was just the chemo working and working well. I didn't get another PET/CT scan during treatment to monitor it. I got one a few weeks after treatment ended and it showed a complete response. I don't remember exactly how long each infusion lasted. I'll guess at about six hours (but I got herceptin also which added a little bit). Two hours may be just for the taxotere, with folfox lasting longer. Then there was the two day fanny pack of 5 FU. I refused to skip showering for two days, so I wrapped my shoulder/chest in saran wrap, hung the pump on the curtain rod, and tried to keep it as dry as I could.

2. My oncologist was 100% on top of nausea. I took a bunch of different meds for that. I want to say four different meds, but I can't remember what they were. I really didn't have nausea before treatment and she managed it perfectly so I didn't have that side effect from chemo either.

3. I'm not a big believer in organic/holistic/alernative treatments for anything other than their psychic benefits. If any of them actually worked, every doctor out there would be recommending them. I just think that the universe of professional oncologists is smarter than some random guy who read something on the internet. That said, I did practice some voodoo myself (with my doctor's approval, of course). I drank lots of tea for the antioxidants. Put LOTS of lemon in the tea for the vitamin C. Read somewhere that garlic could be helpful, so I cooked with a ton of fresh garlic. My oncologist read somewhere that aspirin could be beneficial, so I took an aspirin a day. I don't know that any of these things were of any good, but it made me feel like I was in control of doing something to help myself. And I think that's the actual benefit of those alternative things.

4. As far as nutrition goes, I wouldn't recommend following my path. I can be a bit of a maniac. I wasn't going to let cancer dictate my diet to me. I was going to eat whatever I wanted, cancer be damned. One (of many) example is I drank cold drinks during the folfox treatments (that's how I know it feels like your throat is iced and then shattered.) There is another thread here, just a few down from this one that deals with an EC diet and nutrition. It's by Loretta Marshall. It's from November 10th and called "Post Esophajectomy diet". It's worth your time to read it.

5. I have no personal experience with cannabis or medical marijuana, but there are a lot of folks who swear by its positive effects on nausea, pain, appetite and anxiety. If you're interested I'd definitely say give it a try. There's a thread a little below yours called "Touchy topic, Medical Marijuana" It's by JimboC and it's from January 3, 2012. It has a lot of folks' 1st person experiences and thoughts.

6. One thing I'd like to suggest to you comes from your description of your family. It seems there might be some conflict between what the different family members think is best. Fist, foremost, in fact the only thing that matters is what your MIL wants (if she doesn't want smoothies with organic protein etc..., then that's that, no further discussion). Everyone is entitled to their thoughts, but your MIL is the final decisionmaker. I'd suggest putting that idea out there to the family. It can be hard, because everyone wants what's best for her, but she's the one & only captain on this ship. Everyone needs to know and respect that.

Another idea I'd like to put out there is to not quit. I'm walking, talking proof that being given a stage IV diagnosis with a few months of life expectancy doesn't mean you're actually going to die in a few months. At 40, I had a 15% chance of surviving five years. At 44 I was told that "from where you are, most people live 7 or 8 months, some a couple months more, some a couple months less. And there have been one or two people who have had a complete response." Not one or two percent, just one ot two total. Well, now there's two or three of us. I'm now 50 and still testing clean. Don't quit.

Best wishes to you MIL & your family,

Ed

Hey Ed,

Hey Ed,

If Cannabis, which is a plant, is helpful then why aren't other types of foods, plants and supplements as well? You even used tea which I do too, especially Sencha Tea. Haven't we had healing through nature since the beginning of time until science created modern medicine? I used both natural and medical in an integrated way and would recommend that -- balance. In fact, my natural treatments for two years started taking my cancer backwards -- so when I finally had the surgery, my Staging was better than when I started. I'm not interested in arguing the case, just to say that maybe there's a bigger picture out there than pushing one side or the other. Have a great day and hope your treatments are having the desired effect for you.

This is long but need suggestions Please!

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