38 and diagnosed with stage 4 esophageal cancer
I am a 38 year old male from Minnesota. Non smoker my entire life and pretty much a social drinker until recently. Since essentially Christmas of 2016, all I can say is I have just felt "off". Not really depressed, just unmotivated, undriven, and lethargic. It has happened a few times in the past 2 years that I woke up choking on stomach acid. 5 months ago I began to have some pretty noticeable pain swallowing food.
In June, I went to the doctor because I was beginning to have severe acid reflux in addition to the swallowing problem. (Usually the 1st 3 to 4 bites of every meal need to be taken gingerly and slowly, and red meats and bread or a combination of those cause the most problems.) I told the doctor my symptoms in detail, The doctor barely looked at me, told me I had heartburn and threw a prescription for prilosic at me. The heartburn itself went away quickly, but the swallowing problem did not. and I have since switched to Zantac due to the long term side effects of PPIs)
Knowing the doctor was an idiot, I set up an appointment with a GI specialist at the Mayo clinic in Rochester in August. I detailed all my symptoms, and immediately they began with bloodwork, scans, biopsies, endoscopic ultrasounds...On day 1 I asked the original doc could this be esophageal cancer? "Highly unlikely, infinticimile numbers of people get it at your age. Usually people in their 50s, 60s, 70s who drink and/or smoke their whole lives develop it."
1 day later I find out that I have two abnormal tissue growths in my esophagus, 1 literally a mere inch or so above my stomach sphincter causing my esophagus to be 70% constricted. The other one in the mid of my esophagus, with a tiny amount of tissue connecting the two. Next day, suprise surprise, I find out that it is in fact adenocarcinoma. Next day, I found out it is in my lymph nodes, as far as my shoulders and abdomen, officially making it an early stage 4.
The good things I have going for me are that
1. My appetite is still normal as I write this.
2. Although I don't feel 100%, I have a decent amount of energy, and am able to exercise, even vigorously, if I give myself enough recovery time.
3. It has still not spread to any major organs, I do have a tiny spot on my liver, so small that a biopsy or MRI would be pointless...they think that if it is cancerous, chemo would kill it very quickly.
4. I have a touch of youth left, and my blood work is as close to normal as a 38 year old moderate obese guy can be. No high blood pressure, no diabetes, no severe anemia, vitamin and mineral counts are very close to normal.
At this point I am doing a chemo coctail every two weeks with an experimental immune system booster. I just started round 2 today, and have a take home pump hooked to me until Friday. The goal is to shrink the 2 tumors enough and knock the cancer out of the lymph nodes to where we can at least do radiation.
At this point, I am not even a candidate for surgery, though they haven't completely ruled it out. It is just too thick and too close to too many vital organs.
The surgery they want to do is to cut the top part of the stomach and bottom part of the esophagus out, match it up as best they can. Has anyone ever done this, survived, and had any quality of life or lived close to a normal life after it? They flat out told me even without complications, the first year after that surgery can be hell.
Looking back, I would guess that I have had this cancer at least 2 years, if not longer. There were just too many little hints of things being wrong that I wrote off as just "getting older"
1. Occasional metallic smelling stools for the last 2.5 years.
2. I became a very slow eater without realizing it, and subconsciously I would eat slower and smaller portions.
3. Acid reflux problems that slowly got worse over two years but suddenly became severe earlier this summer.
4. Mild lethargy and a lack of motivation for well over 2 years.
5. Pain in mid to low esophagus after swallowing food that gradually got worse and worse.
6. Dull, throbbing pain directly around and below the sternum. Sometimes it felt like light burning or poking (very different from heartburn, I tried to explain this to the first doctor).
7. Sometimes with along with severe heartburn, pain and itching would radiate to the mid to upper back.
8. About 8 or so episodes in the past 2 years where I woke up choking on stomach acid. Anyone who has experienced this knows it can be 2 to 3 times more painful that simply vomiting. I sleep with my bed inclined now.
9. I get the hiccups now if I eat too fast, probably due to the bigger tumor pushing the esophagus in odd directions.
While I don't feel 100% like I mentioned, I surely do not feel ready to drop dead anytime real soon. The first chemo kicked my **** for about a day, but I was recovering from a cold to begin with. With #2 I am not feeling the greatest right now but I kind of know what to expect.
I know doctors love to throw numbers and stats at everyone and lump people into groups, but I am optimistic that I can fight and beat this. They wouldn't bother treating it if they didn't feel I at least had a fighting chance. The continuous pain around my sternum has all but disappeared, I managed to eat a steak tonight with very little complications. People who look at me do not even believe that I have cancer, I just don't look sick.
I think it is all about your own attitude, even your own spirituality. And the people who support you. Good luck and my thoughts and prayers are with anyone going through this or any type of cancer right now. I am curious to hear everyone's story and experiences.
Comments
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38 is too young for this stuff
Hello,
Hopefully you've saved your life by quickly realizing that the 1st doctor you went to wasn't any good at doctoring. It happens too frequently that folks don't act quickly and the cancer spreads as a result of a doctor telling them to take some prilosec and don't worry about it. Those stories are on this site. Getting to good doctors & hospitals, like the Mayo Clinic, is the most important thing that you can control. Too many people just go to the hospital down the street because it's convenient. You mention that you think attitude and support are important, and I agree with that, but I can't stress enough that good doctors are simply better than bad doctors. By definition, 50% of all doctors and hospitals are below average. It's critically important to go to the other half. That is what you are doing, Mayo is a top of the line hospital.
I started out on this journey in 2008 at roughly your age, I was 40. 38 is way too young for this. I was stage III and had really bad reflux for 20+ years. Adenocarcinoma is usually a result of reflux. Squamous cell carcinoma (the only type your first doctor seems to be aware of) can come from years of drinking and smoking. I noticed food getting stuck in my throat. I didn't know it, but that's called dysphagia and it"s a very common symptom of EC. I had chemo/radiation, then surgery then a bonus course of chemo that was the same stuff as pre-surgery, but stronger. I had a "complete response" and thought I was done with it. A couple of years later (2011), I had a recurrence in a lung and was stage IV. I was given 7-8 months (give or take). I tested HER2+, so the clinical trial I was considering was replaced with Herceptin. I had a very good response to the folfox/herceptin combo and was told again that I'd had a "complete response". I've been testing clean (except for a recent nodule in a lung which is hopefully nothing) ever since.
You asked about the surgery. It is in fact major big deal surgery. I'd strongly recommend that you look at having it done laproscopically, instead of the open procedure. It does take a while to adjust to the new way of life. The two most obvious changes are that you cannot eat as much as before (not even close) and you'll need to sleep in an elevated position (perhaps even more than you're doing. It took me a long time, but I've been living as close to a normal life as possible for years, now. I eat and drink whatever I want in near whatever quantities as I want. That's a big deal for EC folks.
You mention that you're a little worse off after your second round of chemo. The side effects are cumulative. They will get progressively worse. The side effects then slowly go away after you've stopped, but they don't just disappear right away.
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I think I am one who simply
I think I am one who simply had reflux his whole life but never developed actual heartburn symptoms until recently. Even as a little kid I remember burping/verping after any big meal, but I barely had a hint of heartburn until my mid 30s. Being a truck driver, I would sometimes drink up to 8 cups or more of coffee per day. The past 10 years I developed a love for spicy food as well, the hotter the better. I'm sure that didn't help anything.
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Who are you treating with?
My husband has esophageal cancer, and we live in Western Wisconsin, and he has been treating at Mayo as well. I am curious to know who you are treating with, and whether you had a surgery consultation. Are you having the chemo in Rochester? My husband saw Dr. Harry Yoon for his Stage III adenocarcinoma, and then had Dr. Francis Nichols do his esophagectomy three years ago (traditional open Ivor Lewis). Hopefully your chemo will shrink the tumors enough that surgery is a possibility. If you have any specific questions about life after the surgery I can give you some insights.
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I am seeing Dr Amit Mahipalcpassaro said:Who are you treating with?
My husband has esophageal cancer, and we live in Western Wisconsin, and he has been treating at Mayo as well. I am curious to know who you are treating with, and whether you had a surgery consultation. Are you having the chemo in Rochester? My husband saw Dr. Harry Yoon for his Stage III adenocarcinoma, and then had Dr. Francis Nichols do his esophagectomy three years ago (traditional open Ivor Lewis). Hopefully your chemo will shrink the tumors enough that surgery is a possibility. If you have any specific questions about life after the surgery I can give you some insights.
I am seeing Dr Amit Mahipal at this time. At this point I am not even a candidate for surgery, but they haven't ruled it out. I can't even do radiation at this point. I would have to do a full gastroesophagectomy (cut part of stomach and esophagus).
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October 13th update.
Just an update, I can say that a week after chemo #3 I feel much better overall, outside of the side effects of the chemotherapy itself. So far it is usually the day after I unhook my 46 hour pump that I feel the worst, usually I just sleep a lot and it it pretty much chicken soup and toast as far as food goes for about a day and a half.
I didn't even need my anti-nausea pills after my first treatment, after the 2nd one I took them for about 2 days and after the third treatment I took them for maybe 3 days. The side effects from each treatment have been progressively worse, but still nothing severe yet. The nausea this time seems to linger just a bit even a week later, it is a strange feeling to have nausea and be hungry at the same time. My appetite is back to normal except for the 2-3 days shortly after treatment, I can eat like a horse again. The swallowing problem is still there and noticeable, but significantly less. I used to be able to feel the food and pain as it passed both tumors, now I can only feel the larger one.
The NP that I saw on the 4th said that my blood work literally looks amazing for someone with both cancer and chemo drugs in their system, other than slightly low iron and calcium all vitals are completely normal.
So far I am able to exercise and am pretty much back to normal 2 days after unhooking my pump. I have worked myself up to running over 3 miles every other day, and go to the gym every other day.
I definitely do not feel 100%, the fatigue sometimes hits me when I least expect it, but I try to listen to my body and know my limits.
I am hoping that this gives some hope to all stage IV's, and hopefully we are getting to the point where stage 4 is not an automatic death senfence for young and old alike.
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Good to Hear1979bmg said:October 13th update.
Just an update, I can say that a week after chemo #3 I feel much better overall, outside of the side effects of the chemotherapy itself. So far it is usually the day after I unhook my 46 hour pump that I feel the worst, usually I just sleep a lot and it it pretty much chicken soup and toast as far as food goes for about a day and a half.
I didn't even need my anti-nausea pills after my first treatment, after the 2nd one I took them for about 2 days and after the third treatment I took them for maybe 3 days. The side effects from each treatment have been progressively worse, but still nothing severe yet. The nausea this time seems to linger just a bit even a week later, it is a strange feeling to have nausea and be hungry at the same time. My appetite is back to normal except for the 2-3 days shortly after treatment, I can eat like a horse again. The swallowing problem is still there and noticeable, but significantly less. I used to be able to feel the food and pain as it passed both tumors, now I can only feel the larger one.
The NP that I saw on the 4th said that my blood work literally looks amazing for someone with both cancer and chemo drugs in their system, other than slightly low iron and calcium all vitals are completely normal.
So far I am able to exercise and am pretty much back to normal 2 days after unhooking my pump. I have worked myself up to running over 3 miles every other day, and go to the gym every other day.
I definitely do not feel 100%, the fatigue sometimes hits me when I least expect it, but I try to listen to my body and know my limits.
I am hoping that this gives some hope to all stage IV's, and hopefully we are getting to the point where stage 4 is not an automatic death senfence for young and old alike.
Hello,
It's good to hear that you're doing well with your treatment. It hits different people in different ways, but I'd assume that your youth and physical fitness are factors working to your advantage.
You mention that you've completed round #3 of chemo. What chemo are you on and how many rounds are you scheduled for? My stage IV go-around was 12 rounds of bi-weekly Folfox with weekly Herceptin. It was brutal (especially at the end), but it was effective.
I'm six years from my stage IV diagnosis this month. Unfortunately, there aren't a ton of stage IV success stories out there (though there are a few). Please continue posting/updating here, you are, in fact, giving hope to others. If you look at the counter on your post, you can see that a whole lot more people read your posts than actually reply. Each of those readers may well be someone you've positively impacted.
Best Wishes,
Ed
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2 1/2 yrs and numbers are low and manageable at this time.
Greetings,
I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015. I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful. Just logged into the site today.
Dennis
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Interested in your story - can you help?Funoutsyd said:2 1/2 yrs and numbers are low and manageable at this time.
Greetings,
I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015. I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful. Just logged into the site today.
Dennis
HI Dennis,
My name is Deirdre and my father (60 Years Young) has just been diagnosed with Stage IV Esophageal Cancer on the 5th September. We are from Cork, Ireland and do not know of anyone else who is dealing with this type of cancer. My father started Chemo yesterday, Cisplatin & 5FU and HER2. I have had him on several supplements up until yesterday.
1) Beetroot, Apple, Carrot & tumeric Juice (all organic) daily - with Vitamin C powder & Wheatgrass powder added.
2) Cottage Cheese & Flaxseed - small quantity in the morning.
3) Salvestoral Platium - 3 times a day.
4) Smothies with - Almond butter, Almond Milk, Banana, 2 x TBS Chia Seeds, 1 x TBS Sunflower Seeds, Coconut Oil, Vegan Protein Powder, Milk Thistle & Essiac Capsules x 2.
5) Lemon, Baking Soda, Echinchea Water
6) Looking to start him on Curcumin Capsules from Life Expansion soon
However the hospital he is attending right now are very anti any alternative treatments and have told him to stop all of the above. I would be really interested in knowing you story and what you did and did not over the past 2 1/2 years.
Great to hear about survivors doing so well. <Content removed by CSN support staff>
Best Regards,
Dee
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Nov 2nd Update
Right before treatment number 5 yesterday, I got some pretty uplifting news.
Both PET AND CT Scans indicate that the cancer has not spread or grown anywhere else, and both tumors and all previously infected lymph nodes have become 30 to as much as 50 percent less infected. Some of the distal ones are hardly lighting up at all with contrast dye.
I was told I will probably never be a candidate for surgery, due to how far it has previously spread. I wasn't too crazy about 2 feet of my guts being ripped out anyway. Radiation is now becoming more of a possibility in the near future.
Blood work remains normal except for slightly low iron and platelets, the telltale signs of a cancer patient doing chemo.
I am in almost no pain at all, and have very little if any pain when eating. Two months ago I could feel two distinct areas of pain as food pushed down my esophagus, and it was becoming hard to deal with at times. My appetite is almost completely back to normal.
Chemo itself sucks but it is my cross to bear if I want to get better. The cold weather really has brought out the side effects of oxiliplatin. He has slightly lowered my dose twice due to the neuropathy that it causes.
I did chemo #5 yesterday and have my 46 hour Fanny pack hooked up as I write this.
Please do not misread this and assume that I am on the way to a miracle cure. Even if I manage to completely eradicate all the cancer I may have to do a less frequent form of chemo or immunotherapy for the rest of my life.
But even a 20 percent reduction is amazing after only 4 treatments.
I have no one greater to thank but the Lord Himself, and all the people who have been praying for me. The doctors and nurses at the Mayo clinic who do an amazing job, and have let me take part in the special study drug.
I hope this gives a great deal of hope and comfort to all who have been recently diagnosed as well as those still fighting it, and especially those who have lost loved ones. Cancer is still an evil deadly beast but things are different than they were 20 years ago. My uncle went to the Mayo clinic 25 ago with an abdomen full of cancer, all he was told was basically "seek alternative medicine and pray for a miracle, theres nothing we can do for you." 25 years later and by the grace of God , after conly 2 months and 4 chemo treatments I have put a big dent in one of the worst stage 4 cancers you can possibly get, and I am pretty much still living a normal life.
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EC Surgery
I declined the esophajectomy because of the negative posts I have read about the poor quality of life post op and a surgeon at Duke Medical that does about 100 of these surgeries a year and attends conferences to speak about the High risk for these surgeries being the #1 risky surgery in this country. I went to MD Anderson in Houston and had a very minor surgerical procedure (EMR) where the EC tumor was removed and I am currently desease free. MD Anderson has been ranked as the #1 cancer care center in the nation.
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That is great news!!!
It is wonderful to read your good news. A great way to start the New Year. Even if they say you may never be a surgical candidate, you are making great progress on first line treatments and if those don’t continue to work well, there is always second line immunotherapy approaches as well.
I had some issues with peripheral neuropathy in my feet after 6 rounds of cisplatin but it did gradually get better with time. It did take well over a year after I completed by chemotherapy to improve but it did gradually dissipate.
Wishing you continued good news from your scans!!
Best Regards,
Paul Adams
McCormick, South Carolina
DX 10/2009 T2N1M0 Stage IIB - Ivor Lewis Surgery 12/3/2009
Post Surgery Chemotherapy 2/2009 – 6/2009 Cisplatin, Epirubicin, 5 FU
Eight Year SurvivorLife may not be the party we hoped for, but while we are here we might as well dance!
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More positive results
By the grace of God, I continue to show remarkable response to treatment.
After 8 rounds of chemo, I completed my 2nd round of CT scans and PET Scans just before New year's.
All Scans show no new hypermetabolic activity. For now the disease is contained, slowly shrinking and not spreading.
In August I had upwards of 6 infected lymph nodes, the worst of which was one of my right paratrachael lymph node. It was literally almost the size of a golf ball 4 months ago, the SUV max went from off the charts in August to 12.6 in early November to 8.6 last week.
My distal esophageal tumor had a max SUV of 10.4 in August, down to 3.6 in early November, down to 3.2 last week. There is not much they can tell me about the small, upper secondary tumor, or if it still even exists.
The small spot on my liver, whatever it was, seems to have disappeared.
I am still told I will more than likely never be a candidate for surgery, but they haven't shut the door completely.
After my ninth round of chemo, my energy still remains decent and I am able to go to the gym and do long distance running in alternating days.
I no longer get the hiccups when I eat and am actually able to eat at a decent pace with no pain. I am no longer getting the night sweats that I used to have for 5 years or more. I have not had an episode of waking up choking on stomach acid since I started treatment. My appetite is great.
The only real problems I am having from the chemo are the increased neuropathy in the extreme cold weather up here (due to oxaliplatin). Also, my platelet counts continue to drop, well under 100 now and if they get too much lower we will have to pause or significantly reduce treatment for a while.
The was a note in my scans about "restaging", not sure if they "downgrade" a diagnosis or lower the stage # as things shrink and die off...Original diagnosis was T3, N2 in August.
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Good News
Hello,
I'm glad you're getting good reports. I hope they continue and get even better.
Oxaliplatin is not a fun ride. I got six months of folfox (oxaliplatin is one of the drugs in the cocktail) from November to May, so straight through cold weather season. The cold sensitivity went away fairly quickly when the chemo stopped, but some of the tingling/numbness is permanent for me. Oh well, still worth it to be alive.
Best wishes for a positive & healthy (as much as possible) New Year,
Ed
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Staying the course . . .
Wishing you all the best and thank you in advance for sharing your stories as I watch my Man tackle this monster. Stage IV Esophageal Adinocarcinoma post esophagectomy, second round FOLFOX/Radiation. Very interested in knowing how to manage eating and hydration without a functioning stomach, and dealing with radiation side effects such as ulcerated "everything". We've been pretty proactive and smart about nutrition and treatment. But now, mucus is setting in and it's difficult to sleep when needing to spit every few minutes, and at a 40 degree angle I might add. He has all the "concoctions" to minimize all the side effects. Very difficult ride . . . . feel free to chime in, I'll be checking in.
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Hi Dennis . . . .Funoutsyd said:2 1/2 yrs and numbers are low and manageable at this time.
Greetings,
I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015. I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful. Just logged into the site today.
Dennis
This is my first attempt in connecting to someone similar to our situation. My man is 53 yrs old, diagnosed with Stage IV Esophageal Adenocarcenoma exactly a year ago. Went through a milder chemo/radiation to shrink the tumor (handled that one better than expected); esophajectomy 3 months after diagnosis, and now on FOLFOX and more radiation. This round is proving to be much more challenging in that his anatomy is different than the last treatment, and the current treatment seems far more "severe" for lack of a better word. We've become somewhat of chemists for nutrition and he juggles nutrition and hydration days due to a non-functioning stomach. Much mucus keeps him up due to frequent spitting. He's a strong guy with a great attitude and makes it easier for me that way. Any insight you may have would possibly be helpful to us . . . I feel that looking at your post is somewhat of a crystal ball . . . thanks in advance and congratulations on your successful journey thus far!
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What are you doing besides chemo?
Dear BMG,
I've fought with ec for 3 years, but not stage 4 level. Sorry yours was so advanced when they found it. I started my treatments with chemo-radiation then switched to naturopathic means for a couple years. Actually this regenerated my esophagus somewhat, kept my immune system strong (chemo really knocks that down) -- haven't had a cold for 3 years, and contained the cancer in the tumor area. If interested in how I dealt with this through the medical, natural, and spiritual, let me know. cancereclipse@gmail.com
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What type of holisticFunoutsyd said:2 1/2 yrs and numbers are low and manageable at this time.
Greetings,
I am now about to turn 56yo and I was diagnosed stage 4 grade 3 undefined esophageal adeno carcinoma in April of 2015. I've learned to take a more wholistic approach to my own care, but I'm very interested in finding out what others are finding successful. Just logged into the site today.
Dennis
What type of holistic approaches have you taken a nd does your doctor approve them?
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After 12 rounds of chemo, and
After 12 rounds of chemo, and my 3rd setsof CT/PET Scans, I have more great news!
As far as they can tell, The only area of cancer remaining is in one of my right paratrachael lymph nodes. It has decreased in size by over half since the beginning of this year, and the SUV Max from Contrast dye uptake has dropped massively from 8.6 to 3.9. If the response continues at this rate I may be looking at a complete response (remission, N.E.D.) by mid summer!
The doctors now think I really do not "need" surgery if we see a complete response.
My 13th round of chemo after the scans was just plain brutal...but the worst is already wearing off after just 2 days. Everything seems to hit me so hard and so fast, I get severely nauseated while still at the clinic during infusion...havnt puked from any of this yet but I fear those days may be numbered. Low, fluctuating fever of about 99 to just over 101 for about 36 hours after infusion. Ugly, Red Crusty eyes for maybe 36 hours...Flu like joint and muscle aches...The worst of it still goes away within 48 hours.
All I have really done diet wise is massively cut back on the junk food and fast food. I do drink a lot of herbal teas, and have a few homemade smoothies a few times per week.
I am taking a coctail of oxaliplatin, luecovorin, eloxi, emend, flurouracil, and immunotherapy study drug atezolizumab. I think the study drug was designed to destroy solid tumors...some sort of PDL-1 blocker? I'm not sure about all the scientific mumvo jumbo...
I am not completely out of the woods, but praising God that the light at the end of the tunnel is getting brighter.
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Awesome Report1979bmg said:After 12 rounds of chemo, and
After 12 rounds of chemo, and my 3rd setsof CT/PET Scans, I have more great news!
As far as they can tell, The only area of cancer remaining is in one of my right paratrachael lymph nodes. It has decreased in size by over half since the beginning of this year, and the SUV Max from Contrast dye uptake has dropped massively from 8.6 to 3.9. If the response continues at this rate I may be looking at a complete response (remission, N.E.D.) by mid summer!
The doctors now think I really do not "need" surgery if we see a complete response.
My 13th round of chemo after the scans was just plain brutal...but the worst is already wearing off after just 2 days. Everything seems to hit me so hard and so fast, I get severely nauseated while still at the clinic during infusion...havnt puked from any of this yet but I fear those days may be numbered. Low, fluctuating fever of about 99 to just over 101 for about 36 hours after infusion. Ugly, Red Crusty eyes for maybe 36 hours...Flu like joint and muscle aches...The worst of it still goes away within 48 hours.
All I have really done diet wise is massively cut back on the junk food and fast food. I do drink a lot of herbal teas, and have a few homemade smoothies a few times per week.
I am taking a coctail of oxaliplatin, luecovorin, eloxi, emend, flurouracil, and immunotherapy study drug atezolizumab. I think the study drug was designed to destroy solid tumors...some sort of PDL-1 blocker? I'm not sure about all the scientific mumvo jumbo...
I am not completely out of the woods, but praising God that the light at the end of the tunnel is getting brighter.
Hello 1979bmg,
That is amazing news. I'm very glad for you. Hope to hear back from you that you've been upgraded to "complete response".
Stay well,
Ed
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