Durvalumab

[Robert Macaulay]

Tom

Is that valid at Wallmart for discount. lol

I would like to take this opportunity to thank Imfinzi for supplying me the drug and clinic at no charge. I never thought this thread would become so popular this last year thanks to the people on this forum who contributed and all those that viewed over this time.

Special thanks to Kleo  who was a great support in the beginning of this journey and alas had to stop the drug.I believe it was because she did not receive the Durvalumab goody bag.😎 Thank you Kleo and all the best on your new path.

Going forward thanks to everyone and it is my hope we all can benefit from this drug in the coming months and years. Going to take a break now and will update on my future scans ,The  word is it could take up to eight weeks for the side effects of the drug to wear off.

Bob

[Rower Michelle]

Time off is well deserved Yoda Bob!  The Durva Club is official, complete with its emerging play list!   You’ve been a beacon of hope- thumbs up! 

[Tomm]

Infusion #9 done yesterday with new energy

update on blood work from #8

TSH  was 139 and now 113

the others numbers got better too but this is the one that messed with me a lot. I started taking vothyroxine , (synthroid) and within a week  I felt much better and ready to go to the Farmers Market tomorrow.  Everyone NEEDS to have your thyroid checked!!  Fatigue very light and no side effects that I know of..

enjoy your summer

[Charles]

Tomm,

WOW! 113 is still way high. I couldn't plan on getting behind the wheel of a car with my levels that high. My TSH has come down to 40 something and getting a little closer to normal but clearly still affects my overall abilities, strength and energy levels tremendously. Just had to up the replacement hormones to 75 mcg. per day before number 11 on Tuesday and evergy has improved a little but still has a ways to go. good luck and glad to hear you are improving.

[Tomm]

Charles,

I was started on 75 mcg when they saw my TSH 139 ... I checked Dr. Google to see how long it takes to start working and it said some people start to feel the effects in a week or two ... or a month or more. I choose the week option. I was very low energy for a week and then... better every day now. Hope your new higher dose gives you a speedy recovery

[DFK]

Tomm and Charles

Great on #9 done and TSH levels going south. If memory serves me correct, you, Charles and Ron H had high thyroid levels picked up later than sooner???

As Tomm has impressed upon all of us, TSH should be regularly monitored with treatments. I have TSH and Cortisol drawn every two weeks, some of my fellow infusers have them drawn every four weeks. Only when TSH is abnormal high, will T3 and T4 levels be done.

TSH-Thyroid stimulating hormone is secreted from your pituitary gland. TSH stimulates the thyroid to produce T4 (Thyroxine), a thyroid hormone. When your T4 is low ( a side effect of Durvalumab) the pituitary gland senses that and increases your TSH levels to produce more T4. You may still have a high TSH level but your synthroid  medication is replacing your thyroxine (T4).......just a little FYI. For me, it helps to know some of this minutiae.

My fatigue seems to come and go and I can’t nail it to any particular day. Peaks and valleys so pacing myself works for me. My voice remains hoarse and I still lack pitch and volume. Been on Prilosec (for acid reflux) almost a month with no improvement in my voice. ENT referral for vocal chord evaluation not until November. I've taken it upon myself to discontinue my steroid inhaler that was prescribed for me after my pneumonitis diagnosis in May. A common side effect of inhalers are voice hoarseness and my inhaler is the only change in my regime since starting Durvalumab in January. I'm grasping at straws here but willing to eliminate the obvious. Getting #16 Durvalumab this coming Tuesday with DLCO pulmonary test. I've been pushing myself with exercise and even though I know that my lungs is not a muscle, I truly hope my pulmonary function has improved.....we shall see. Carry on.

With Blessings and Gratitude, DFK

[Roz]

Wow, and to think my last TSH reading was 0.19.

Having it re-checked soon because quite obviously, it's low.

Hang in there everyone!!

 

Ro

[RonH]

Roz-

Definitely bring it to the attention of your Onc, however according to the lab results I receive, the "Reference Range" for TSH is 0.178 to 4.53 is with in the normal range, however I see on the internet, that there are other "reference ranges" such as 0.4 and 4.9 . It may depend on the specific lab, I don't know. I would suspect that being at or below the far low end, they would also check your T3 & T4 numbers.

DFK -

You are correct. As far as I am concerned the ONC/Labs should have been checking my TSH long before they actually started to. I started Durvalumab in early November of 2018 and the first time they checked TSH was in late May of 2019 and only then discovered that I had a TSH level of 44.03. (A check by my PCP back in March of the previous year had me at TSH=3.17, well within the normal range). Per my online readings, Durvalumab sending people into Hypothyroidism , or in some cases, Hyperthyroidism, is fairly common  and therefore should be a fairly routine blood check when on immunotherapy. 

Tomm & Charles -

As I noted in earlier posts, once started on levothyroxine, my TSH levels started dropping and after a short while, within10 days to 2 weeks or so, I could tell my energy levels had significantly increased. I am currently on 75 mcg, and working my way up to the proper dose. The results I have from 7/15 has my TSH down to 34.13. I was told by my Onc that they only test TSH once a month (i.e., every other Durvalumab infusion appointment), and normally only adjust dosages every 4 - 6 weeks, so this past Monday 8/12 they should have checked my TSH / T3 / T4 levels again. The results are not back or published to where I can get to them yet and it's been 5 days now. Part of the problem is that the lab that my Onc uses is in their Oncology facility but is not able to do the TSH testing there, so that lab sends the samples off to their corporate labs in another state for those tests which delays things. I believe my Onc and I will have a heart to heart discussion during my next appointment with him regarding blood testing, to include why I am not getting my Cortisol level tested. I have noticed that between the ONC, then the Infusion Nurses who access my port and draw the blood samples, then the lab on site itself (who as mentioned is a independent lab with their equipment in the ONC's facility), and then the main lab actually doing the thyroid panel analysis , that you have to keep an eye on them to confirm that you are actually getting all the tests that the Onc ordered. Of course during the next appointment on a Monday, I will formally be getting my latest CT and Brain MRI results back from him (from the scans the Friday before), and I am also scheduled for Durvalumab #19 that day, so I may have other things on my mind depending on what I hear.

Robert -

Congratulations. Enjoy your well deserved rest but be sure to check in and keep us updated. Thank you so much for leading the way and providing so much advice and for sharing your experiences with us who are not far behind you as well as with those just starting out in the journey.

-Ron

[Roz]

BTW, I'm already on thyroid meds for hypothyroidism so I have it checked pretty regularly.

I do think it's probably going to be considered to be within the normal range, but we'll see.

 

Take care everyone,

Ro

[Charles]

here is a link about our "little freing" the thyroid

https://www.ncbi.nlm.nih.gov/books/NBK279388/

[Charles]

here is another link about the thyroid and immunotherapy

 

https://voice.ons.org/news-and-views/how-aprns-can-manage-immunotherapy-related-hypothyroidism-in-patients-with-cancer

[DFK]

Uneventful #16 infusion yesterday. All labs within normal parameters. 

Repeat DLCO test at 64% today, up from 44% after pneumonitis in April. Don’t know if time and healing accounted for generous jump in DLCO value but I'd like to attribute it to my tenacity in starting an exercise program. Baby steps to wellness.....I'll take it.

Carry on everyone.

With Gratitude and Blessings

DFK

[Barb1260]

#9 done. Only 17 to go. April seems a long way away. 

[DFK]

Hey Barb,

Congrats on #9.

I certainly understand #26 seemingly looking like the end of an endless hallway in an Alfred Hitchcock movie. And I also know that time marches on and we all will get to the finish line. So for now, during this surreal cancer life we have been dealt, let’s make the best of our today by focusing on just today. For me, today I will be designing and sewing potato bags and potholders for the Infusion nurses for Christmas with Netflix blasting in the background. Maybe I won’t t get far, but I also know that baby steps will get me closer to my Christmas goal and to my next infusion date......Baby steps Barb, we're doing it everyday. Give yourself a pat on the back for getting this far. A virtual hug from me to you too.

With Blessings and Gratitude, DFK

 

[Barb1260]

DFK-yes ma’am. One day at a time and enjoy every minute. Sometimes it seems such a long wait but then again it goes pretty quick between scans. Enjoy your crafting. 

[Tomm]

Barb one more mission completed.   I wondered if your blood work is all good? TSH good?   . A really good book from the 70s is Be Here Now by Baba Ram Dass.  I know we have 17 more to go in the future but we are here today enjoying the fruits of the season

DKF  ..it's good to hear someone on  #16 can have all blood work in the normal range. Please keep posting if anything  changes and let us know how your next scan goes

Unknown other Durvas ... Please share how your doing, it helps all of us in this small group

[Barb1260]

Tomm. All blood work good so far including TSH. How are you feeling?

[DFK]

Tomm

December-completed chemo and radiation treatments

January-First Cat Scan with contrast since diagnosis, 40% decrease in tumor, no progression, Durvalumab started.

April-Cat Scan without contrast done to chest for complaints of shortness of breath, diagnosis post radiation pneumonitis, Durvalumab on hold after 8 doses, tumor even smaller 

May-Cat Scan without contrast done to chest, pneumonitis resolved, Durvalumab restarted, #9 dose. Tumor even smaller, barely perceptible. 

My oncologist will not do another Cat Scan until I am done with 26 doses of Durvalumab, which will be in January (8 months from last Cat Scan). Of course, if I am symptomatic, appropriate imaging will be done. I am followed by my Pulmonologist and Cardiologist every 3 months and my Oncologist Radiologist every 6 months. This is strictly for monitoring.

I am still mulling over the idea of no surveillance imaging if without symptoms. My fears nag at me to be more insistent on every 3 month surveillance imaging, but my gut tells me I am fine. I have been blessed with stable chemo and radiation treatments as well as uneventful and stable Durvalumab infusions.  

So as it stands now, 10 more Durvalumab infusions and no surveillance imaging, labs every two weeks prior to infusions. 

Will update all to any changes.....we're all doing the "countdown". 

With Blessings and Gratitude, DFK

[Tomm]

Barb ..I'm feeling somewhat better but still dealing with TSH  113 and extreme fatigue. I can still do the grocery shopping, picking food from my garden and making all my meals and then I'm done.  Happy to hear all your blood work is normal and your feeling good. 

DFK   It sounds like your doing really well killing tumors. I agree with you that scan every 3 months should be done, it's standard where I am .. on the other hand we really don't want more radiation than necessary. Keep posting for all the watchers to see Durva is working and the year investment is worth it. 

9 hours ago, DFK said:

Tumor even smaller, barely perceptible. 

 

[Charles]

Tomm,

Hang in there, very sorry to hear about the extreme fatigue and high tsh,  I know how you feel. Has your onc suggested or given you any prednisone?

[Barb1260]

Tomm-I forget who posted it a while back, maybe a constant low dose of prednisone will help?  Low enough to stay on the Durvalumab. I think it’s 5-10mgs. Worth asking about. 

[Tomm]

Charles and Barb..    my onc has not suggested or given me prednisone but I'll ask this week. He started me on levothyroxine 75 mcg. My TSH was 139 and it dropped to 113 in two weeks with this dose, I will get it tested every two weeks for awhile and assume my dose will be adjusted this thrusday. I really want to avoid prednisone if I can.

Thanks for the suggestion

 

 

[DFK]

Tomm-Sorry for your extreme fatigue and I hope your oncologist has a useful and effective remedy for you. 

Charles and Barb, thanks for low dose Prednisone recommendation....I have read some of your earlier postings about low dose steroids while receiving Durvalumab, not a bad idea if abatement of symptoms without losing effectiveness of Durvalumab can be obtained. An interesting concept, Prednisone suppresses our immune response and Durvalumab revs up our immune response. A balancing act. Wouldn't it be just grand if the great minds of science today can find that balancing act of cancer suppression using immunotherapy while integrating steroids to abate adverse events. And it's available and as common as Tylenol.........one can dream.

A few thoughts:

I am a hobby musician. I play the piano, guitar, ukulele and violin. A group of us Seniors would get together weekly to jam and occasionally do some gigs for friends, Care Homes and celebrations when invited. It's been a year since I've been on "sabbatical" from my music. Today I decided to drop in on a practice session. Hey, what's not to like about playing some music and whooping it up for a couple hours, then having a nice 2 hour lunch with friends. To cap off the day, attack this weeks shopping list, which included stops at 4 different stores. 

Left the house at 7am and got home about 4pm. By 4:15, I was passed out cold from exhaustion. Woke up a couple hours later and felt a little loopy but got my mojo back. Then somewhere in my memory banks, I remember reading that tiredness can be slept off but fatigue cannot. Then I remembered how awful my chemo and radiation fatigue would stick to me like white on rice. And even though I could never sleep off my fatigue, I did allow myself daily naps (when able). Figured that maybe the naps wouldn't cure my fatigue but on some level, I knew I was gifting my assaulted body with healing rest.

Again Tomm, wishing you recovery and relief. 

With Gratitude and Blessings, DFK

[Charles]

Tomm,

The bottom line, I have found is this : It is what you can stand and or how hard your onc is willing to work on your side effects before sending you to a specialist or pulling you off durva. I am a military veteran so tiredness and fatigue has never been a stranger to me and I have found that everybody's definition of the two vary with the definer's abilities. That being said, The endocrine (Thyroid) side effects and opthalmalogical ones are a little more rare than the fatigue and tiredness ones on durvalumab. At a prolonged tsh level of 59 I experienced muscular failure at minimal effort (chewing food or standing for short periods of time) experienced slurred and slow speech patterns , a weight gain of 30 pounds in one month, light sensitivity and visual blurring and changes in my eyes with swelling of the face and eyes, and felt like I was having a slow stroke, if you will, and was getting weaker and weaker day by day as well as doing a durvalumab "waddle" whenever I walked. I have been on prednisone since my 2nd infusion and have shown very good (I think) tumor shrinkage with no mets in spite of all the prednisone up to this point. I have quite a few bottles of different mg. of prednisone as well as a prednisone pack and a "just in case" 20mg. prescription that stays current as I said, just in case. My oncologist has all but let me write my own prescriptions for everything as he knows I want to kill this cancer and will crawl up to death's door to stay on Imfinzi. My Onc also has a good friend on the Pacific Coast Imfinzi trial team that has told him that they are prescribing ongoing prednisone of 10 mg. while staying on Imfinzi and they are having good results doing it. Truth is, Prednisone has helped me to stay on Durvalumab and I will continue 10mg. per day until no longer necessary  Thanks be to GOD, radiation technology, Chemo, Sodium Bicarb, and prednisone. Results do vary though.....

[DFK]

Prednisone and Immunotherapy

I found this interesting.....and how far down the rabbit hole would you want to go?  Prednisone usage is still being studied and tweaked to get that nice balance. I truly believe that we are the Trail Blazers that will help with the maximum efficacy of immunotherapy for future Durvalumab users while minimizing and addressing adverse events. 

https://www.ascopost.com/issues/november-10-2018/corticosteroids-and-immunotherapy/

Thank you everyone for providing conversation and open dialogue.

With Gratitude and Blessings, DFK