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Durvalumab


Robert Macaulay

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#22 done with just some fatigue yesterday, blood work in normal range. 

DKF ..  thanks for the cup of water. Teeth.. I have not been to my dentist for a few years & didn't want any more x-rays but was getting a small toothache and went. I just finished getting 7 cavities filled and will get two teeth pulled after I'm done with Durva.  I'm not saying it's related to Durva but thought I would post it. It could be chemoradiation related?

Grahame ... Great news on your 1st infusion without any issues except fatigue. Having a happy oncologist is always good news. I never got muscle aches but we are all different. I have a port and put numbing cream on before they insert it, don't feel a thing. 

enjoy the day

 

 

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Oh Tomm,

I think it's great you carved some time and made an effort to have your teeth checked but whoa, you sure got handed a hell of a lot to contend with. But on the other hand, priceless to have your teeth in good order.

I was fanatically religious about having my teeth cleaned and checked every 6 months which is why it was so shocking for my dental issues to rear their ugly heads BUT it's no secret that former smokers contributed to compromised dental health and yes, chemoradiation and our age makes us prime candidates for bone loss and gum recession resulting in tooth decay. Both of my "root canals" were the result of decay right under the edge of my crowns that had been in place for over 20 years....I had a good run. But still, what a miserable hand to be dealt with, on top of my flu. I remain completely indignant.....well at least a little bit. Hope your diligence for your tooth health is seamless and painless.

Finished my PETSCAN today.....managed to control my dry hacking cough (somewhat) during the procedure. Felt great to get that out of the way. Tomorrow root canal....knocking these annoyances to the side is a good thing.

Started my Vitamin C 1000mg/day. I feel so empowered!

Happy Valentines Day my friends:

I was arguing with my husband at Luigi's Diner when my best friend came over, grabbed the garlic bread and coleslaw from our table and ran off. I wish she would stop taking sides.

Take Care All, DFK

 

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DFK,

Thanks for your comments;  I did read them right away (& passed on to husband) but am just now getting back to reply but I do appreciate them. No his skin on back was only slightly light red after radiation, seemed to be OK with some cream on it. You made a good point about the Gabapentin - had not thought about a different dose, etc.  He did ask the doctor at next appt but she said if the Excedrin (acetaminophen, caffeine, aspirin, 565 mg) was working to just stick with that.  He  has not yet tried the heating pad we have - will bring it up again. More recently, his nipple was very sensitive, and he put a gauze pad over it which helped a lot.

Tomm,

Thanks also for your comments. I had not  heard of a naturopathic oncologist but it sounds like a good idea. I did find one only in Spokane where he goes for treatment. Unfortunately, our insurance is a Medicare Advantage Plan and there are no naturopathic doctors at all in their network; will phone but believe from the web site that there is no coverage at all if doc is out-of-network. We cannot afford to private pay. The whole plant CBD tincture sounds promising and is legal in Wa state. Believe he wants to stick to trying only one thing at a time so will keep that as an option.

Silly Cat,

Thanks much. Do you know what dosage Gabapentin you took only at night?  Will see if  he agrees it might be worth another try. As usual, your experience is so valuable to other patients - thanks for sharing.

He will have Durvalumab #10 next week and is also scheduled for a CT scan - his doctor left clinic in Dec. and he now  has a young female doctor he  has only seen twice I believe (also sees ARNP, backup for doc); from earlier scans, the tumor has shrunk a lot and the lymph node is also much smaller, which is great news; look forward to further reduction hopefully.  Just got a flu shot myself recently but cannot persuade him to get one or a pneumonia shot - both are covered by ins. Will ask doc about it at next appt if he doesn't, oh well, something to argue about I guess, lol. I don't want to "micro-manage" but he is a "hunt and peck" typist so would never post on a forum and usually dictates what he wants help with on the forum so I can pass it on.

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Hello, again,

This may be a new topic but my husband Foster asked me to post about his experience with skin sensitivity especially on his chest. Clothing exacerbates the sensitivity. One nipple is painful and he has put some gauze over it which helps a lot.  He mentioned this to the ARNP he saw today, and she felt it may be a result of radiation - however, that ended on July 29th last year. He started immunotherapy Durvalumab on Sept. 17th and just finished #11.

Has anyone else experienced this kind of skin sensitivity and was it due to the immunotherapy, radiation, or something else?

Thanks for your help.

Georgia

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Hi Georgia,

First and foremost, congratulations to hubby and you on finishing #11.
 

I did have an area on my back, a very noticeable darkened square from radiation, that acted up every now and then with rash and itchiness. It was of my opinion that though the radiation caused the area to be sensitized, I felt the Durvalumab was responsible for the itching, tenderness and rash. I treated it with prescription Hydrocortisone 2.5% cream when it flared up with relief.
 

Take Care, DFK

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Hi 

I had minimal burn on chest and quite a reasonable darkened patch on back after radiation. This has healed quite nicely . Have had a single dose of Durvulamab and 1 week in have noticed surprisingly the milder chest burn area developing a itchy rash more so than the back. Early days for me though. Number 2 on 28 Feb. I do find energy levels are down but persisting with walking dogs, pottering on yacht trying to get it back in water and some general maintenance around our 2 acre property. 
 

Grahame

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Happy Friday to All,

February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕

Questions I had for Oncologist

1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.


R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 

2) What now? 
 

R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 

Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.

I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 

Thank you everyone for your support. 

Take care, DFK

 

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Wow, you must have been really relieved to hear this news!  You made the smart call to enlist the experts from day one, along with your Wonder Woman attitude it all played a part!  That’s awesome.  I hope you have a fabulous trip, if you are able, Moonstone Beach in Cambia California is worth a restorative visit, it was one of our favorite places (near the Hurst Castle). Carry on! 
Michelle 

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8 hours ago, DFK said:

Happy Friday to All,

February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕

Questions I had for Oncologist

1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.


R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 

2) What now? 
 

R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 

Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.

I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 

Thank you everyone for your support. 

Take care, DFK

 

Hi DFK what wonderful news . An inspiration to us all to continue the fighting our journey. Positive approach you took has paid dividends it seems . Look forward to reporting similar success in the future 

have a great holiday 

Grahame

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Thanks Barb, Michelle and Grahame for your kind words of support.
 

It would be no surprise to anyone that I had a sleepless night prior to my MD appt to discuss PT/CT results. I felt especially vulnerable since I was experiencing new aches and pains from the flu. Pulled a muscle below my ribs from vigorous coughing and strained my lower back, again from vigorous coughing. In my mind, these were solid indications of metastasis to my ribs and spine. As I mentioned before, fear of the unknown are horrible victors and there are no boundaries as to what my overactive mind can conjure up. My dear husband is always tasked with pulling me back to earth from the stratosphere of the "C" what if's.
 

Ron H, thanks for reading, how are you faring with treatment?  Tomm, Tom, Curt, thanks for reading and your support. TJM, thanks for reading and welcome. Your tenacity will take you far. 
 

Early on in my treatment, I had a little secret that I kept to myself. During my bike riding, I envisioned that with each stroke of my foot pedal, I was killing "billions" of cancer cells. It became my reason to never miss a ride. Even when the weather was iffy, or I just wasn't feeling the love, I still had my task of killing billions of cancer cells. One especially rainy day, there was a break in the clouds and I ran outside, bike in hand screaming to my husband, I've got to go, I got some cancer cells that need killing. He of course was befuddled but knows that in my "C" world, I am always trying to work things out. 

Take Care everyone, DFK

I was wondering all night where the Sun had gone, then it "dawned" on me.....

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DKF

really happy to read your success and joining the NED club. It's nice of you to let others know that PDL-1 is not required to get NED. When you come to Oregon if you find yourself and husband in Eugene there is this https://www.eugenesaturdaymarket.org/ ..the longest running saturday market in the USA. 

Two Hippies are walking down a railroad track stoned..

One Hippie says "This is a really a long staircase!"
The other Hippie says "I don't mind the stairs, it's this low  handrail that's killing me."

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DFK, ecstatic to hear your great news! 

I'm scheduled for Ct this week. Hoping and praying for good news too. I need to ask why I don't get PET scans more often? 

So happy for you!!

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This isn't the proper forum for my request, but am most familiar with my Durva buddies here. 

Can I ask, if I may for your prayers and good vibes please. My hubby is in treatment for this dreaded disease but his is PanCan stg 4. He was doing great for 3 years till recently. He's had pain and docs trying to get his meds right and get him stronger to do chemo again. . It's been a nightmare. 

I am thankful I've been strong as I have been to care for him. 

Thank you, Opal

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Wow!!! Great news NED is the best news ever! I have changed onco and I am very happy, although I still have a lot of side effects from 5 infusions of Durva, I have Hashimotos thyroidists, and my skin is finally doing so much better! after the 5 infusions all I did was go from one Doc to another first a cardiologist, then thyroid doc, dermatology doc, had basel skin cancer all caused from the Durva, I asked to stop the treatment before I got to 5 but the Dr kept pushing me to continue, it was a terrible experience, and I am still suffering anxiety from it, although I am positive we all have experienced anxiety from the cancer itself. I wish that I was able to tolerate the Durva, with a PDL 1 Neg it seemed fruitless to me. I am so happy that DFK is now NED, that is wonderful news, congratulations! I asked if there be an alternative to Durva, and was told, "not in this setting" needless to say my former onco was not the best at giving bad news. Well onward I go, March 9th I get another PET/scan and follow up with new onco please pray for me, it is very scary not having much support here from home, and I appreciate all the good news everyone has to offer. Kate 

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DKF,

Congratulations - what good news, so happy for you.  Thanks also for sharing all the details - it is so helpful for me to pass on to my husband - had #11 recently and most side effects seem to have resolved for the time being.  I have learned so much on this forum and appreciate everyone's comments and experience so much.

Again, yea !

 

Georgia

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DFK - Thank you for inquiring. And congratulations on the NED. Enjoy your west coast vacation, you deserve it!

Yea, I am still lurking about and checking on the Durva Club members and keeping all of you in my thoughts. I've been kind of silent with nothing new to post but do read every posting in this Durvalumab group. So happy the read of some of the NED results with the Durvalumab treatments. I see there are a few new members here so welcome to them from a former Durvalumab patient with 18 infusions under my belt until after having a reoccurrence and one new local lymph node involvement and then finding out that I was PDL-1 Neg and ALK+ (confirmed CT/PET/Lung Needle Biopsy/EBUS). From what I understand, since there was no progression elsewhere I am still classified as a Stage 3A. 

As I reported last December, after 6 weeks of being switched from Durvalumab to a TKI (ALECENSA - [Alectinib]) due to the ALK+ mutation, the December CT had indicated a possible small effusion and a possible slight case of pneumonia at which time I was placed on antibiotics. At the begining of January I had a X-Ray to check on that which resulted in the radiologist reporting no changes to the malignancy, but also no indications of an effusion or pneumothorax. I am scheduled for my next CT in early March. 

It is still a struggle to get my ONC to remember to order Thyroid tests along with the other monthly blood tests/port flush. After reminding him last month that I likely still had elevated TSH levels and being told that that it had dropped off the radar, it was finally tested again several weeks ago, with a TSH level result of 16. It's been almost a year now of slowly increasing my dosage of Tirosint (Synthroid) and I've only dropped from a high of over 44, down to 16. Getting more than a little impatient with the slow pace of treatment, but at least my T4 levels have just now risen back up into the normal range. His opinion was that the TSH level is trending in the right direction. My response was that I would hope so since it has been nearly a year! My latest "discussion" with him was why he has never, not even once, had my CPK levels checked. He started to say it wasn't necessary until I whipped out the info sheet on ALECENSA which states that it should have been checked. Long story short, it now WILL BE checked in early March. With the cost of the Alecensa, I hit both my yearly deductible and yearly max out of pocket within the first two weeks of January, so I told him that I was having this and any other test medically justified test that I wanted whether it was there or through my PCP. One thing that I've learned from all of this is that you have to learn as much as possible from others (like in this forum) and then advocate for yourself. 

I do have to say, although I, like many of you, I suffered through some of the many side effects of Durvalumab, but I can also say that the side effects of the Alecensa are no picnic either. Other than taking 8 capsules a day, primarily my main complaints are with the constant fatigue and shortness of breath after any exertion at all. Of course the weight gain side effect also doesn't help either of those issues either. I am becoming very impatient about getting the results of my next CT as I am curious if this TKI (at about $15K per month) is helping or not. Unfortunately unlike Durvalumab, Alecensa is not a possible cure as it only delays progression for some people until such time that the beast mutates again and finds a way around that medication. I guess luckily when that time comes, there is a third generation TKI now available that works even better for many patients. I guess we'll see.

In other matters, I am still working full time, but giving either retirement or going out on sick leave and then LT disability some consideration for this year. I probably will if I progress over to Stage 4. I don't mind the work (office work) except for maybe working with some of the millennials, but I dread the walk between our parking garage and our office building everyday. By the time I get there I am huffing and puffing excessively at which times it takes 10 minutes to start breathing normally and my heart rate to return to normal. Decisions decisions….

I am sending well wishes to everyone here.

Till next time...take care and continue to fight the fight! My thoughts are with each and every one of you.

RonH

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Kate7617 ..

sorry to hear you are having side effects, this is the 1st I have heard that durva caused basel skin cancer. This info. may be of use to you https://hemppedia.org/cbd-oil-skin-cancer/

From reading this forum I've notice that most side effects happen around infusion 5-7 and then our bodies start adjust . Fatigue is almost always an issue. My guess is your about to feel better. Your  Onc  gives you Durva with curative intent and you can see people becoming NED from getting it. Some good news is that we get Durva, only released to the public 2 years ago and before that all they could do was wait and watch for cancer to return..  we are very lucky to get this. The  past if over, the future isn't here... be here now. Best of luck on your journey, you are not alone.

A pun, a play on words and a limerick walk into a bar.

No joke

 

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58 minutes ago, Kate7617 said:

Wow!!! Great news NED is the best news ever! I have changed onco and I am very happy, although I still have a lot of side effects from 5 infusions of Durva, I have Hashimotos thyroidists, and my skin is finally doing so much better! after the 5 infusions all I did was go from one Doc to another first a cardiologist, then thyroid doc, dermatology doc, had basel skin cancer all caused from the Durva, I asked to stop the treatment before I got to 5 but the Dr kept pushing me to continue, it was a terrible experience, and I am still suffering anxiety from it, although I am positive we all have experienced anxiety from the cancer itself. I wish that I was able to tolerate the Durva, with a PDL 1 Neg it seemed fruitless to me. I am so happy that DFK is now NED, that is wonderful news, congratulations! I asked if there be an alternative to Durva, and was told, "not in this setting" needless to say my former onco was not the best at giving bad news. Well onward I go, March 9th I get another PET/scan and follow up with new onco please pray for me, it is very scary not having much support here from home, and I appreciate all the good news everyone has to offer. Kate 

I (Georgia) read the following posted by Eagle 13 on 12-9-18, but don't know if any of it would be helpful;

I (Eagle 13) was put on Imfinzi or Durva right after my Chemo and radiation treatment completed. (With no testing) I received 8 treatments of Durva before I had to stop due to the Pleural Effusion.  I am now Stage 4.  Biomarker testing was done on the fluid that was pulled.

I sought a second opinion with the agreement of my Onc.  My Onc was puzzled the Durva wasn’t working and ordered the biomarker test on the fluid.  Results came in right before the 2nd opinion appointment. The 2nd opinion Dr took over my primary care by my choice and put me on the targeted therapy.  The targeted therapy is 1 pill I take once a day, every day at the same time.  The drug for my mutation, EGFR - (Epidermal Growth Factor Receptor) they chose was Tagrisso.   I am a non-smoker.  EGFR is typical for non-smokers who get  non small cell lung cancer.

Here is the explanation of the biomarkers

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5137804/

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Hey Ron-

Good to hear from you.  I know you’re probably active on the ALK FB Page, I’m the lurker with ALK here.  Just a thought on the disability/retirement. I filed for disability and didn’t regret it. I received a list of key phrases from a disability attorney for my doctor to document in my medical record.  Wasn’t a fun process and the private employer sponsored disability insurance company did send at least two private investigators to keep an eye on the house (ugh).  
Social Security was a piece of cake in comparison. 
Alectinib kills my energy too while the scale increases 1 1/4 Lbs per month.  As Bob says Que Sera Sera.   Hope to see you in Denver this summer.  
Michelle

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On 2/21/2020 at 2:31 AM, DFK said:

Happy Friday to All,

February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕

Questions I had for Oncologist

1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero.


R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your  lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators:  Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 

2) What now? 
 

R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. 
 

Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months.

I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. 

Thank you everyone for your support. 

Take care, DFK

 

Great news!!!!!!!!!! I do have a couple questions.

My onco told me the tumor will never be gone it is now scar tissue which they hope doesn't contain any cancer. Yours is gone?

Did your onco say that perhaps the chemoradition did the job? When i ask mine about my good response so far she says we don't know if it's the immuno or chemoradiation.

I'm almost a year since treatment started and the last CT said "stable". 9 more Durvalumab treatments, have stopped twice for various problems. 

I don't post much but reading everyone's journey is very helpful. Joe.  

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