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Robert Macaulay

Durvalumab

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Charles

I monitor the results but do not get alarmed if some go out range as this happens quite often and the docs pickup on anything on my monthly ckeckup. I have never had any results continue out of range, Thyroid came close last month and wbc went ballistic that was due to chest infection in December all back to normal.

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Hi Charlie

Thanks for your post- it’s very interesting.  I’ve heard of a few PDL-1s monitoring their diet & PH levels too   They are all in NED.  You might want to see if there is an Integrative Oncologist in your area to help you put together a comprehensive treatment plan.  When I was first diagnosed, I suppose like many, I did hours of research.  For me the internet can be a scary place.  My Integrative oncologist aka the hippie doctor is doing a great job.  The less time you spend online is more time to enjoy doing other things.   Hope this helps!  

Michelle

 

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Hiya Fellow Durva folks! Anybody miss me? 🤣

How's everyone doing? I started working again...supposed to be part time but...well...they keep increasing my hours. LOL

Doing much better now...back at my durva infusions. Caught that nasty bug that was going around but a quick dose of antibiotics fixed it.

All the muscle pains in my side and back went away with the steroids. Now I just have a sore shoulder thing. I'm looking into physical therapy for that I guess. Doc says it's just me...not cancer related. I get the weirdest stuff. 😁

Hope everyone here is doing good! I don't get to drop in as much as before with all the working. Meh

 

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We did miss you ,Kleo! I was getting ready to post a "Where is the other Durvalumab twin?" message. I'm glad to hear you're doing well.

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Hi, Kleo! It's good to have you back! Thanks for the update and we're glad to hear that things are going well!

Have a wonderful weekend,

Lauren
--
Digital Community Manager
LUNGevity Foundation

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Charles

Number 14 coming up next week all my blood work except Lymphocytes which has been out range since day 1 (low). Fatigue has gone but that could return at any time same with the itching. At present time this is the best i have felt since starting treatment late August last year. The only thing is chest congestion in the morning due to inflammation with slight cough caused by the drug working its thing.

Is it working ? i never ask  seen the doc yesterday  and next scan is late April and as i was told in the beginning if there is any progression the treatment will halt.So i just keep showing up for the blood work and infusions bi weekly with monthly doc appointments and three month CT. Que sera sera

Bob

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Hey Robert, glad to hear back from you. just finished number 3 on Tues.  I had a liver scare so went to E.R. and it turned out to be inflammation so I didn't take the third infusion due to prednisone but got it a week later. I'm like you, feel better now than any point in treatments. Coughing comes and goes but can do more physically, inflammation is worse as the day goes on but not near as bad as it was, starting to have more "good lung" days than "bad lung" days and hoping no more side effects except inflammation. 

Charles

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Charles

In the past with gout i  took ibuprofen and worked real well for me. Also took some last December when i got bad chest infection . Now seeing my lungs are inflamed by the drug working  i decided to take one once a day and it sure has helped my condition.

Bob

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Robert,

 funny you should mention Ibuprophen, I just happen to have a bottle not 6 inches from my left hand here by my computer, yeah it works pretty good , thanks for the link, Charles

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Charles

I have also been using Mucinex tablets twice a day it Helps loosen mucus and makes coughs more productive. They are approved according to the  Durvalumab site as safe drug.on there lookup register.

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On 3/9/2019 at 5:02 PM, Robert Macaulay said:

Charles

Number 14 coming up next week all my blood work except Lymphocytes which has been out range since day 1 (low). Fatigue has gone but that could return at any time same with the itching. At present time this is the best i have felt since starting treatment late August last year. The only thing is chest congestion in the morning due to inflammation with slight cough caused by the drug working its thing.

Is it working ? i never ask  seen the doc yesterday  and next scan is late April and as i was told in the beginning if there is any progression the treatment will halt.So i just keep showing up for the blood work and infusions bi weekly with monthly doc appointments and three month CT. Que sera sera

Bob

Hey Bob, Opal here.. I'm 2 infusions behind you tho I started 8/30 I had a nasty rash and my immuno was held.  Happy to say that rash is gone but got blotchy rash on arms now. My lymphocytes are low too, but told not to worry.  I'm due for scans about April 15 or so. Here's hoping we both get great results.

Kleo.... wondering how your joint and back and side muscle pain is?  You arent only one getting weird stuff, I too have strange joint back and muscle pain and stiffness. Tylenol is not helping.  I get infusion this week and will be inquiring about this. Are these adverse reactions or side effects....or old age perhaps.  Hope you are doing good and not working too hard😉

 

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Hello Durval pals, I will not be getting anymore Durval infusions, did not get #13 but got CT and MRI 3 weeks early due to what I thought was a pulled muscle creating some intermitent pain between my scalpula.  My PC doc sent me for Xray, long story short I saw my oncologist and he said MRI shows a lesion on T5.  

Oncologist had me get blood work up to see if I have mutation...why dont they do it at the get go, I feel all those weeks getting infusion could be wasted. But that was standard treatment for stage III I was told.  I'm scheduled for sterostatic radiation next week for the lesion.  

Does an MRI show cancer, because report uses words like "favorable" and "possible invasion from adjacent primary tumor".  I am thinking I would prefer more definitive description before getting my spine zapped!

I'm trying to be positive and think now I can perhaps get targeted treatment and this is going to be all good.  Anyone have similar experience? 

Whew! High anxiety here!!

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Opal

Sorry to hear of your recent results from the MRI and if they sending you for sterostatic radiation next week for the lesion they must have had good indication from the ct and MRI to proceed in that direction.

My next scan is due April-30 with follow up the following week with the doctor for results.I am similar to you and staying positive .

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Sorry to read this Opal. I’m nervous about starting this myself for the same reason without mutation tests. Seems it is somewhat standard for stage 3. My insurance won’t pay until stage 4 and I can’t afford to pay. Hopefully it was found quickly. Keep fighting. Thinking of you.  Where are you in NJ?  I left 3 years ago. 

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