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Robert Macaulay

Durvalumab

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Tomm-I am happy I’m doing well, I wish we can see the benefits other than a scan every 3 months. 

Michelle-thanks. I’ll have a slice for you next weekend. 

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Hello all!  Been a while since I posted and I see several "Durvies" joined this immuno journey since I posted end of March.  So many of you put great and encouraging info out there. TX!! 

1st... Hi to Kleo..got you in my prayers everyday!  You keep on going! You mention no PDL1 but your lungs cleared up. Couldnt it have been Durva was working?

Bob M  -I'm behind you by just a few infusions, I'm up for #18.  Please keep us posted on how you are and what happens next when you reach the end of infusions. I feel pretty similar to you as far as mutation or lack of or lack of testing. How is your cough? I have one and hope its side effect of the durva.

Eagle, thanks for your encouragement to keep going and not fear scans. 

Hello to 2 Jersey girls😊

Here is my update since early April...in March I was having discomfort in my back near original tumor area so scans were done a week early. Small spot on my spine near tumor area. My Onc stopped Durval and sent me to RAD Onc, who BTW told me a year ago at radiation to eat eat eat. I have been doing so since and gained about 15 pounds and I'm still eating.  Don't think its the Durva. No lack of apetite here. 

Anyway the RAD Onc, he is wonderful!! said he wasnt convinced spot was "C" and was not going to radiate but sent me to IR.  Interventional radiology did biopsy and yippee, turns out not "C" but a minor fracture and I got a little cement. This episode set me back 2 infusions.

I am behind a total of 4 infusions because after my very first 2 fifteen treatments ago, I got awful rash and concern for pneumonitis went on prednisone and then a taper which took about a month.  This set me back 2.  

So after 17 treatments my new rash is slight and only on my forearms. I do get fatigue and dont have ambition and drive the old me had. But I try to stay positive and push myself. Sleep is awful. Anxiety is too. I have hard time not thinking "what if".  My leg, knee and hip joints are fairly stiff. (Note to self..I am a year older)But I thank God I feel as good as I do.  I did notice this went away when I was off Durva for the month. Must admit after a month of no infusions I felt really good. No short breath, cough or stiff bones or muscle aches. 

I get infusion every 2 weeks and typically can go shopping or out to dinner on way home so it really isnt anything like chemo. 

I'm due for scans next week. Scanxiety! I'm trying to stay off the internet because I dont like reading about OS etc.  I am trying to think this treatment will be as my Onc says "with curative intent".  And I'm not underestimating the power of prayer.

Here in the States its a holiday. Happy 4th! (Sorry this was long).

 

 

 

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Opal

Good to hear from you i have three left to go if i could only get rid of the chest infection or whatever they want to call it and the docs are all aware of it as it shows on the CT .Had it since after the first scope in 2017 and many points in between except on Chemo where is was gone 😎.Yes the intresting part for me is now coming up after August-14 CT on Sept-3 and docs Sept-6, My bet is the  Scan late December will tell the whole story good or bad and yes the treatment is also wearing me down to some degree.

I never have concerns over waiting for scans results. Que Sera Sera

ps If you made it this far you will make to #26😁

Bob       Happy July-4

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Hey Bob, thanks for your reply and good to hear from you! Only 3 to go!! Thats terrific.  Yes, Que Sera Sera. I do sing that tune often.  I'll have you in my thoughts and prayers. I look to hearing  from you and updates. You're sort of the leader here for me being so close behind you in number of treatments. 😎

Please keep me posted. 

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Opal

This one is cross between a Border Collie and Smooth coated retriever i think was bred with the build for moving cattle or horses. I have Border collies in the past but after the last one great dog but no more pedigree dogs to inbred and this one is the last for me and #1 for me over many years with dogs.

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Hey there Jersey Girl! 

Great to hear from you!  The other Jersey Girl is probably on the boardwalk enjoying a slice of pie! 

All is well here on my targeted therapy (as Bob says we’re as good as our last scan). I’m up next at the end of this month.  Heading home to see my parents in Bloomfield next month, San Juan Island, WA in September, then Maine in October/November  

Sounds like you’ve been a real trouper through all of this. The anxiety is something we all have to live with.  I have replaced the “what if” scenario with “what’s next”.  Immune therapy  doesn’t work for mutants (yet)  so for now we take those happy little pills and carry on. 

So glad you’re keeping your spirits up!  

Michelle

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I’m questioning whether this is working. Pet scan report showed more shrinking and SUV 2.3?(I didn’t print it yet) of the main tumor and the lymph node is gone. But now I have a small volume pleural effusion and larger airspace disease with lower SUV?  From what I’m reading, pleural effusion puts me at stage 4 and prognosis is 6 months?  How could that be if the main  tumor is going away and no other hot spots. I’m going to freak out before my appointment on Thursday. 

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Barb

If Durvalumab is not working  for you  the doctor on Thursday will be one that makes the decision to stop the drug due to progression or some serious side effect.

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Barb

sounds like a pretty decent pet/ct to me considering. you've got more shrinkage and litlle uptake, working? something IS. Lymph node gone?  MOST WUNNERFULL!  And the plueral effusion? not great but  just keep positive because it sounds small, where exactly are you reading that a small effusion puts you at stage 4 and prognosis is 6 months?  TUMOR IS GOING AWAY AND NO OTHER HOT SPOTS, This sounds like an overall good deal to me and hope mine is at least that way on Tuesday.

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Hi Charles. I read that on a few cancer websites when I googled pleural effusion. Overall I agree it’s a good report but new developments scare the crap out of me. I also read it needs to be drained and tested for cancer cells and 50% come back positive.

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barb,

don't worry about what you read on websites too much,  small plueral effusions are not uncommon , I have one that has shrank and even had a "new" small pericardial effusion myself, but tumor shriinkage, less uptake, NO NEW HOTSPOTS , LYMPH NODES GONE, sounds to me like you should be doing the funky chicken and spreading the good news. and congratulations on a Good scan is in order here .

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Lol. The funky chicken. Thanks Charles. I guess I’ll put it in the back of my mind until I see the doc. I try to stay positive but you know how it is. Gonna plug myself into an inflight movie and look forward to getting home in 2 hours. Have a great Sunday. 

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35 minutes ago, Barb1260 said:

Lol. The funky chicken. Thanks Charles. I guess I’ll put it in the back of my mind until I see the doc. I try to stay positive but you know how it is. Gonna plug myself into an inflight movie and look forward to getting home in 2 hours. Have a great Sunday. 

Barb,

I developed a pleural effusion while on Durva.  Ultimately, I was taken off the Durva because of it.   The Onc had a biomarker test done on the fluid and I learned that immunotherapy would not work for me.  I had 4 Thoracentisis done removing 6 liters of fluid from my left lung.  The fluid was cancerous and moved me from 3B to stage IV.   That was last July,2018.  I went to a lung cancer specialist and was put on Tagrisso since I am EGFR exon 19 deletion. I take 1 pill everyday.  I am considered stable with no progression.  There is a small plural effusion left over from my last Thoracentisis where the fluid septated making it too hard to get it all.   I recommend asking for a biomarker test.  There are many new treatments beyond immunotherapy.

 

🦅

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On 7/7/2019 at 1:03 PM, Eagle13 said:

 

🦅

Dr. Eagle

Did you even read the post? hers was a positive post and appears to be working for her so why would you SIR, recommend changing anything at all?

Edited by Charles
respectfully asked to by Tom Galli (Moderator)

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No Bob, didn't work that way at all!

 

Edited by Charles
warned to by Tom Galli

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Charles

Thank you for your reply and again it speaks volumes of your wisdom and hope, And I will now look forward to your journey when you resume your Durvalumab  treatment in the near future, and you will have no concerns about me correcting your posts again😎.  All the best on your Durvalumab  journey .Keep us posted, Sorry i could not be more helpful in your present situation.

Stay the course

Bob

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Hello  All.. Hope we all have great CTs ..

My infusion #7 is due this thursday.  I asked my Doc. if I could get my infusion a day early to help with the fatigue when I go to a 3 day event in the woods that starts this friday and he said insurance would not allow early and  suggested I skip this week. He said as this is  a marathon a week break is OK with him and it's his idea.  I get a CT July 16th and infusion #7 on July 18th.  Sounds like a lot of us are getting a CT .. Please post your results..

To help with fatigue I got a "Myers cocktail"   from my naturopathics oncologist.

Myers' cocktail containing:

5 mL of magnesium chloride hexahydrate (20%)

3 mL of calcium gluconate (10%)

1 mL of hydroxocobalamin (1,000 μ/mL)

1 mL of pyridoxine hydrochloride (100 mg/mL)

1 mL of dexpanthenol (250 mg/mL)

1 mL of B-complex 100 containing:

100 mg of thiamine HCl, 2 mg of riboflavin, 2 mg of pyridoxine HCl, and 2 mg of panthenol

100 mg of niacinamide, 2% benxyl alcohol

5 mL of vitamin C (500 mg/mL)

20 mL of sterile water.

Quote

 

 

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Hey Tomm. Going for #6 tomorrow. Got my results for last weeks PET/CT. lymph node is inactive and no longer large-death to that spot of cancer. Main tumor is now 2.8cm and not very active. Radiologist gave me the lowdown on Tuesday. Small pleural effusion-he wasn’t concerned about it but he showed me the pic, it’s very small compared to other pics I’ve seen. Will get onc’s opinion on that tomorrow. 

I actually flew north this past weekend and had no problem with fatigue like I thought I would. I’m feeling normal almost-whatever normal is. Enjoy the weekend 

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Hey Tomm-

FYI I just met with my new hippie doctor- had to drive all the way up to Iowa City- yeah the mid westerners like their windshield time. 

I was familiar with Meyers Mix- the doctor told me that the blood levels for B-6 need to be carefully monitored as higher doses of B vitamins can cause neuropathy. This was news to us.  

Thought I wouldn’t pass along. Glad to hear you’re doing well! 

Michelle

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Barb,

Great news!!! you are the destroyer of bad things!! & the news that your Doc is not concerned is what we all want to hear.  Have you gotten your TSH  thyroid checked? This stuff messes with it and my is off the charts at 29+ but I have no symptoms  and started taking Amor for it & my Vit D was low, both  can cause fatigue.

I take lunch to my infusions and call it my picnic day, put  on my ear phones and watch my ipad and make believe I'm not in an infusion room with 60 others. 

enjoy the season all..

30 minutes ago, Barb1260 said:

Small pleural effusion-he wasn’t concerned

Quote

 

 

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Hi Michell..

Thanks for the information on Vit b. I have not had any neuropathy at any time during any treatment but I will watch my B's ,maybe my small dose of thc/cbd helps?  How are you feeling?  you always seem very positive, I hope  you feel like you sound.. thanks for being here for so many of us, you are a big help to me with your information and support..

 

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