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Durvalumab


Robert Macaulay

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I don’t have a port. 
It was during the CT scan so no durva. Think it was the contrast.

My arm was swollen for 2 days. Hurt like a mofo. 

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Hi Polly,

Totally sucks all around.  I can’t remember did they do a biomarker test when you were diagnosed?   Hang in there, keep fighting.  Does having the antibodies to COVID give you any peace of mind?  
Michelle

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Michelle

they did a biomarker. Don’t remember the results. Having the antibodies relieves a little bit of my anxiety but I live in middle of NYC and it’s been crazy over here!!! 

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Yep.  My family is over the river in NNJ, someone set the 9-11 Memorial on fire yesterday putting the entire neighborhood at risk.  Homeowners jumped in dig firebreaks until  the FD arrived.  Total madness in the burbs too!
 

Be sure to ask about the biomarker results. It could help determine what the next course of treatment will be.   

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Hello Durva Club Members-

If you have any time, please give a warm shout out to your newest member in Canada, Lindsay under the Introduction page, just joined today.  I'm sure you guys will make her feel welcome!  

Michelle 

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Thanks for the intro! I was looking at this thread earlier and have found lots of great news stories! It’s been helpful to read and gives some hope!
 

I was wondering though if anyone has had a change to their treatment frequency due to COVID? I’m now going for a double dose every 4 weeks. 

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Hi all,

Just had #20 this past Monday! So far I'm handling it all ok. I say it's the low dose steroid getting me thru this. My Oncologist agrees. I still have weird aches and pains, and my Onc just shrugs her shoulders and says thyroids good, bloodworks good we will continue with your treatment yes? Well duh! Of course. Gotta love her she is a wonderful Dr, my Dr Chang.

Had a virtual or whatever you call them thar telephone face to face visits with my Pulmonologist yesterday, well that was strange if you ask me, he too is chinese, I had a difficult time understanding him, but we got through the visit ok. He said "Oh you gained weight this is good!" Yes I gained 40 lbs! I was 118 when I first saw him in May of 2019 I now am 158, I've been whining because nothing fits me from last year! Bright side I can get some new clothes, down side, I have to order online, Ugh! Oh well, this will be a trip.

Polly, so sorry to hear about all the crap you've had to go through! I hope everything works out for you, I'm sure your oncologist has something up his/her sleeve Please keep us posted

Hi Jack!

Well take care everyone, have a great night 😃

Roseann

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Hi Lindsay Welcome to the Durva Club!

I live in Connecticut, so far I still am getting my treatment every other week. I wouldn't want to get a double dose! How does that make you feel, getting it like that?

I hope your feeling ok with your treatments going forward. 

Take care 😃

Roseann

 

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Thanks Roseann! 

so far I’ve been feeling good. I get a bit of a discomfort in the center of my chest but no shortness of breath so they’re not too worried about it. 

We’ll see how things continue, I’ve only had 3 treatments total - 2 regular and one double. I just hope the math works out that it ends up being the same treatment in the end. 

I’m sure I’ll be in here lots with questions as things move along. I’m not too sure what to expect side effects wise, it seems like some of you had some and some hand none! 

 

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Hi Rosann,

So glad to hear that you’re doing well!  Sorry about the weight gain, we all get that, happy doctors who obviously can’t appreciate our wardrobe crisis!   Aches and pains seem to come with the territory, totally sucks.  You might want to ask about some anti inflammatory supplements such as fish oil-curcumin combo or the bromelian qlucosamine chondroitin cocktail.  
 

This super cute t-shirt dress arrived today- check it out:

https://www.amazon.com/dp/B071H6MTLS/ref=cm_sw_r_em_api_i_L2X0Eb5G4E1WR

Its very flattering & true to size.  Happy shopping! 
Michelle 
 

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Hi Michelle, nice dress! Thanks. I'm more of a dress type of a gal anyway, much more forgiving what with the fluctuating hips and what not LOL! Looks very comfy and the price is something I can afford too! Do you know if the curcumin will mess around with my gallstone? I was taking Fish oil for a long time, but I stopped, can't remember why hmmm. I will have to ask about these combos, so far my weight has pretty much stabilized, I go between 154 up to 158.9, they tell me it's hormones! Haha! I'm 62 yrs old what hormones I say. Anyway, I have to go have a look see on Amazon and order 1 or 2 of those dresses they look so comfy.

Thank you again Michelle, I Hope all is well with you❤️

Lindsay,

Glad to hear things are A-Ok so far, we are here for you, if you have any questions or concerns, remember no question is ever a stupid question, one or all of us have probably experienced the same thing at one time or another 😃

Take care

Roseann

 

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I am so happy I found this group, thank you all for the support and responses to my concerns. 

I look forward to continuing reading all of your experiences and sharing mine along the way. It’s nice to have the support of those going through or who have gone through the same thing. 
 

treatment number 4 will be in a couple weeks for me. Fingers crossed the blood work is good and we can keep going! 

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Roseann 

Thought I was one of the few gaining weight in this treatment. Started at 156 in December when I was diagnosed. I am now and not so proud 185. I’m only 5’3”. Doc said it’s diet and I told her that the prednisone has me angry or hungry. Easier to satisfy hunger. Lol 
Hoping now that I’m not on Durva anymore my weight will go down? Maybe? 

Michelle,  I wish I wore dresses. Those are adorable. 
  
Polly

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  • 2 weeks later...

Well, blood work was good, and I will do treatment number 4 tomorrow! Got some good information on the change in protocol to 4 weeks, and it sounds like this might be the way forward with some of the studies. Which would be nice to not have to go in all the time and be such a regime! 

No real side effects yet, when did you all start to notice any?

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Hey Lindsay,

Good news on going forward with #4! I Just had #21 on Monday. I'm getting there! Still every 2 weeks, I wouldn't want it any other way, thank you LOL!

I, myself noticed side effects almost right away. By my 2nd treatment I started getting all outta whack. I was getting shortness of breath, severe muscle aches, tingling in both my hands and feet, wicked back pain, headaches, stupid crying all the time. I was just a hot mess! My Oncologist had me skip treatment #3 and most of those issues resolved, so we knew it was from the Durvalumab. She put me on a low dose of Prednisone 5mgs, I wanted to stop treatment all together, because I was pretty scared, but I trusted her so I started the steroid and pretty much have had a few side effects the scared me but were resolved quickly! Now, I still am freakin tired for the first week, recover then back in for my infusion. My tumor has gone down and according to my scans no activity in my lymph node, or anywhere else! So the stuff which I refer to as "nasty *ss crap" is working Yay! So since I'm getting close to the finish line I'm happy, but also nervous as to whats next?

Take care,

Roseann

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Barb and Polly,

I just had #21, gained a total of 40 lbs so far went from 118 to 158! I am 5ft 5in I had to get some new clothes to wear! Since I'm 62yrs old I don't see the weight coming off very easily, so I am ordering a few dresses that Michelle recommended from Amazon, they are really sweet! And clothes that will grow with me LOL!

Enjoy your summer!

Take care,

Roseann

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Note to Lindsay, and then PShsy...

Warning, this is long, sorry.

Lindsay I finished #26 infusion about 6 months ago. Here's my side effects story..  Keeping in mind I did NOT get double dose once a month. At my #2 infusion I also received a flu shot. About 2 weeks after that infusion I started to develop a rash. A minor side affect not too prevalent or talked about. My rash didn't itch, it was just red blotches which started on face and disappeared then showed up on my neck and chin, and disappeared did this small sections until it hit my ankles. Not pretty but not painful. Derma gave me every cream and ointment but nothing helped it. A couple Durvies sent me a link that apparently those administering never realized that one should not get Durva AND a flu shot same day or I was just sensitive. 

So along with this (Polly pleez note) an early scan showed slight pneumonitis. Thus Durva was held and I was on 70mg Prednisone and tapered down over I think the next 6 weeks. Steroids were awful. I cried, got cranky and wanted to eat but tried not to. Rash disappeared and so did pneumonitis. Back on Durva. Polly why are they taking you off? My main complaint, I could only sleep it seemed in 3 hour increments for the duration. Fatigue was terrible. I too gained the 30 pounds without really eating more, probably less then normal. It was all in my mid section. I continued on exhausted but managed. Scans showed shrinkage and good stuff. I didn't have PDL or a mutation. Testing showed no active "C".

At 20 weeks I was noticing knee and joint pain which continued and lessened just recently. I get stiff now in joints at one position for long periods but chalk it up to a few years older. Not complaining.

Last week I had my 3 month scans and all is well. Stable and labs great. My Onc seems to think I may be stretching scans to 6 month intervals after September's. I like that but then I don't.   I managed 26 infusions and a separate lab poke for each visit without a port and no problem. I attribute that to some very good nurses. 

Well thru all this, I wondered if I'd get a head/brain scan ever again. I was told no symptoms, Stage 3 no scans needed. I still worried.

Yesterday afternoon while sharing care giving for my Mom, I jumped up from a cat nap and tried to make a quick dash to my Mom except that my face had a quick meeting with the kitchen floor. I ended up in ER (oh I didn't want to go!) with 6 stitches, a broken tooth and a sprained pinky finger. Two inches I would have hit the soft carpet.  There is a silver lining in this. Stitches in the eyebrow and all.....ER had to do a head scan.  All is good. Clean and clear.

I wish all you Durvies and caregivers courage, strength, faith and hope to keep going. Miracles do happen.

Hugs to all,

Opal

 

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Hello Fellow Durvas and Done with Durvas club members ... I'm in the Done with Durva club. My update: My last infusion that I should have gotten in April was canceled, my CT that was due in April was canceled, my port take out was canceled, my port flush was canceled  and all doctors visits canceled. I just got a date for my big reveal CT on July 1st. The last CT in late January showed I am NED and I have gone with the "if no one says you have cancer, you don't have it"  I like that feeling and now I have scan scanxiety again. 

My side effects started around #4 and it was just fatigue.. turned out my thyroid was not being checked and when they did I ended up at 139.. normal in 3.5-4.5.  I got meds to fix it and in a  month or so I was down to 3.6. I did not gain any weight during the entire treatment.  Now that treatment is over I have itching from my knees down to my ankle at night. We are all different...

take care all..enjoy the season

 What did the little corn say to the mama corn?

Where is pop corn?

How do we know that the ocean is friendly?
It waves!

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Opal, 

I hope you’re healing from your fall. Stitches must suck but you did get the head scan. I’m not entirely sure why they stopped the treatments and in fact am really conflicted about it. I have/ had pneumontis they believe caused by radiation but I also tested positive for corona antibodies.. The pulmonologist isn’t sure why they stopped either. 
I also only sleep for about 2-3 hours at a time wake up and force myself to sleep and I’ve actually skipped a night or 2 with no sleep at all

I have been able to get back into bike riding and mild yoga so I’m trying my best to combat this weight gain and reverse it.


I’m not sure how to go about asking for second opinion about whether discontinuing Durva treatments or even I should? Any advice? 
 

Polly 

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Hello all. Been a busy bee since my last infusion on May 7th. 3 weeks after I felt like my old self and I feel better a little more every week. Funny thing is I would get sob doing too much and I just realised this too is getting better. Decided to tear down a wall which was a 4 day job. It’s been 3 weeks, it has grown into new floors, paint, doors-what has possessed me?  I’m glad you are doing well and I’m hoping we all keep getting good results. 
barb

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PShsy...it will take some work to get a second opinion but definitely worth it. Get your medical file, treatment records, and get a different Oncologist. Get in to see one ASAP. You're city is going green or opening up I thought I heard. 

Perhaps when Rower reads your post I'm sure she will have a couple of ideas to pass on. She's got Jersey girl roots not so far away.

You and your health are definitely worth your time so Just Do It. Pleez?

Good going getting into biking and yoga. 

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Hey ladies, JG checking in here.  Polly probably a good idea to get a second opinion from an expert in lung cancer (most of us see general oncologists).  You can start by contacting the help line at the Go2Foundation or Lungevity.  I know that Go2 maintains a list of regional experts.  In your neck of the woods the doc will either be affiliated with either Memorial Sloan or Mass General.   I understand Mass General is offering video appointments.  Let us know how it works out. 
Michelle

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