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Robert Macaulay

Durvalumab

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3 hours ago, RonH said:

Just a quick update. Had my most recent lung needle biopsy today, this time they went in through my back and into my right upper lobe, just to the left of my right shoulder blade. No real pain during or after except I did have a partial lung collapse. It however re-inflated by itself before the first x-ray an hour later, and then the second x-ray two hours after the first one confirmed and I was released. A long day, 7am check-in & 4:45pm check-out and I am beat. Results are due Wednesday afternoon. (They didn't bother to tell me not to drink liquids before the procedure so I had to wait for 4 hours in the morning)!

 

Hey Ron H, I had my initial lung biopsy exactly like yours, but I had to have drugs, lots of them, I have Epilepsy and one of my triggers for seizures is high stressful situations and for me I had to be put in a very relaxed mode then out with that twilight stuff ūüėɬ†so I felt no pain once that hit. I was lucky no lung collapse. It was after when I went home that the pain hit! Dr called in a few pain meds, I was ok after a couple days. Sorry they didn't¬†give you adequate pre-admission instructions sucks to have to just hang around and wait. I'll keep you in my prayers, so when you go for your results they are clean!

Take care, Roseann

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DFK-When I spoke to the PA about the 5mm mystery nodule, she said we will watch it for now. Because I usually see the Oncologist to go over scans, I moved up that appointment to Thursday before the infusion. The scan was 2 weeks early so the follow up wasn’t until October 3rd. Not that I don’t trust the PA, but this is my life, I now have a few questions that I need her to answer. 

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Roseann - Thanks. They did put a light sedative through the IV but I was fully awake and aware. I actually found being placed on my stomach and going into the CT better (less claustrophobic) than laying on my back. I was actually able to keep my eyes open.

Barb - Wise choice, while I listen to what the various medical professionals tell me, if there is the slightest doubt or question, I go for a second source. There is only one doctor that I have 100% trust in and he's my cardiologist.

Although I could probably have gotten away with taking today off from work due to the biopsy yesterday. I am on my way to work to keep my mind occupied while waiting for the results tomorrow. It's not even 6am yet and I've checked my account on the webpage twice already in that slim chance that the pathologist has already posted the results. It has happened several times that I see the reports before I have a meeting with the Oncologist. Nothing yet there to see, except for various older test reports (CT's, PET's, Biopsies, Procedures, blood tests, etc) for the last several years. ANXIETY!!

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Good Wednesday to all,

Barb-Thanks for update on plan for mystery nodule.

RonH-Result day....prayers and thoughts with you

Had #18 infusion yesterday. Blessedly uneventful. All my labs remain within normal parameters

Ongoing side effects since initiation:

Localized itching to my back area remains constant-Steroid cream works

Mild headaches for a day or two after infusions, never requiring analgesics

Generalized aches and pains to thoracic chest area and back.....more irritating than painful. Sometimes I take Motrin 800mg just to be done with it. Have used Klonopin in the past couple weeks and was surprised how nicely it abated my chest/back pain. Klonopin is prescribed for M.S. neuropathy pain too. Klonopin was originally prescribed for my anxiety when I was diagnosed.

Hoarseness persists, pending ENT and GI consultation. EGD scheduled for Oct 1st ( Upper GI scope). Oncologist suspects post radiation esophagitis though I have never had any difficulty swallowing, any heartburn or acid reflux (that I am aware of.)

Unrelenting fatigue. I continue to pace my tasks and stick with my exercise program every other day.

Weight gain 18lbs since start of Durvalumab. Puzzling as my intake has not increased and my exercise  program has been expanded.

Tomm-I have been unable to find Manuka Honey 15 UMF or higher here locally so I want to order online. Any recommendations on brand. When researching brands I did read that some companies were fined for diluting or overstating their UMF. I’d appreciate any ordering leads. 

With Blessings and Gratitude to all

DFK

 

 

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Well the biopsy results are in. I am officially off the Durvalumab Immunotherapy after 18 infusions. All the previous tumors and lymph nodes were clear except for one lousy spot. They are not sure if it is residual cancer that the chemo/radiation/more chemo/Durvalumab didn't quite get rid of and it started growing again, or its a recurrence in the same spot, but it's there and the Onc says it's time to move on to other potential treatments. He does not believe continuing with the Durvalumab to be beneficial for me. (He says I'm welcome to get a second opinion if I wish but I don't see much need to). 

The next step is unknown but the biopsy specimens from Monday along with blood samples taken today are being sent off for biomarker testing (by Tempus). Unfortunately it takes 3 to 4 weeks to get the results back. In the meanwhile, the Med Onc will be referring me back to the Radiation Onc that I used for my initial radiation treatments. He believes that they may be able to do stereotactic treatments on the one remaining active tumor but he isn't sure. I'm just waiting for the Rad Onc to call me back with available appointment days/times. If given the option and the Rad Onc thinks that she has a reasonable chance of getting it, I will elect to have that done next. At least the actively growing tumor in the right upper lobe is not near any other organs or critical spots that I know of. He didn't believe that actual surgical removal was a viable option after all the chemo and radiation that I've already had. Sounded like the Med Onc was thinking in the lines of targeted therapy dependent on the biomarker results if the stereotactic radiation is not an option or doesn't work.. 

Some days you just want to go to bed and pull the blankets over your head and forget about everything. But tomorrow is another day to resume the journey in fighting the cancer again. Wishing all the Durvalumab club members success!! I'll stick around and keep everyone posted.

Oh I forgot to write about the thyroid testing saga last month (which seems minor now, but irritated me greatly at the time): Although I had saw on the doctors orders that I was supposed to have all the normal blood tests but in addition a thyroid panel with TSH had been requested. I personally looked at the orders myself as the infusion nurse was accessing my port to draw the blood samples and confirmed that. Then when I saw the Onc later that day and he also confirmed to me the Thyroid panel test had been ordered. When no results came by Friday morning I emailed their office to inquire. That's when the finger pointing started. They first blamed the lab, who then blamed the infusion nurses, who then blamed the doctor, who then blamed the lab, and around and around it went but in the end, no one had sent the blood off to have the thyroid panel tests done. Needless to say, they then had one very upset patient on the phone. Initially they said that I needed to come back in to have more blood drawn but as it was Friday afternoon, it was too late. They then called me back a little while later and said that they still had a vial from Monday that they could use. I said okay and they rushed it off to the lab. When I was back in to see the Onc the following week, before arriving I saw the test results. The T3, T4 and the FTI results were there, but no TSH reading. Furthermore the results were virtually identical to the ones that I had received two tests before that. So when I saw the Onc I noted that the results were for all intents were identical to a previous one several months ago, he immediately caught on that I was implying that they had used a much older blood sample than what they said. He assured me that they only hold samples 1 week and what was tested was from the most recent blood draws. He had no explanation why there was no TSH reading, but with the T3/T4/FTI being the same as several months before, he expected that the TSH would be as well and went ahead and increased my thyroid med dosage. I think I kind of pissed him off with my implied accusation, but they are now very aware that I am checking everything they do and say, and will question anything that does not seem quite right. Oversights do happen and I understand that but I "suggested" that they needed better quality control to assure that what was ordered by the Onc was actually getting correctly done.

Well since I'm on my soapbox now, I might as well say that the worse part of the biopsy Monday was in Recovery. Apparently my biopsy was the least serious procedure in the recovery area that I was in. Across the isle, there was an frail elderly lady that was in a lot of pain and was convinced she was dying and was crying for her family. Her vitals were swinging everywhere and her body temperature was dropping. They even brought in a potable heater that had a hose to blow warm air under her blankets. The nurses were running around trying to help and get the doctor there stat. However by the time I was released, she was doing better and her son was there. I hope she made it. Then in the next room over there was an elderly man in his 70's that apparently had a heart attack and was being informed that that he needed a quadruple heart bypass and that it had been tentatively scheduled for tomorrow (Thursday). The doctor explained the procedure to him and his wife and what would happen and that the surgeon would be in the next morning to discuss further. Of course as soon as the MD left in comes the "financial people". Apparently he is on Medicare and it will only pay for 80% of the expected costs and the hospital wanted to know when they could expect payment of the balance and that they "request" payment upfront. (I've had that debate with them before on the "we request" vs "we require" upfront payment. Normally they request it, but don't actually require it, they just imply they do. I've heard that the financial people get a bonus if they obtain payment in advance and some are quite aggressive about it. Once I even got out of the chair and started for the door before they called me back and told me that they could wait to bill me for the balance after they received the insurance payment.) Anyway I then had to listen to his wife and family assure him that they would find the money somehow, but he didn't want to wipe out their savings so he was being reluctant to even agree to the bypass. It was a sad story and I hope and pray that it works out for them. The recovery area sort of made my miserable day on Monday seem very trivial in comparison.

Until later...……….

-Ron

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DFK     This is the brand I used    

East Cape Te Araroa Premium Manuka Honey UMF Certified 15+   ...Whatever  Brand you get make sure it is Certified by the New Zeland govt. This was their liscense # UMFHA Licence # 1024   but this # may change. I could only find the +15 on line, I also used this kind ... Kiva Raw Manuka Honey, Certified UMF 20+ (MGO 850+)

hope this helps

 

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Ron H

sorry to hear your results but it sounds like you have a team looking out for you, I vote for  stereotactic treatments, it worked for me twice. When you get your Bio-test back they may have another targeting drug for you if you need it. Keep blazing the trail with us.

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Ron. Sorry about the results. One door closes and another opens. I’m sure your team will get it under control and you will get NED in the future. Fight on and keep us  posted. Once a Durva always welcome!!

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Ron,

I’m really counting on stereotactic radiation for you. I am recalling my stereotactic experience and there was concern about previously radiated tissue from my conventional radiation. My doctor told us about the risks and explained that despite scientific knowledge, treatment decisions were judgement calls. 

If your radiation oncologist shows reluctance, consult another. Eliminating tumors is far better that tolerating them. 

Stay the course. 

Tom

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RonH.

Very sorry about your results and the sadness and ineptitude you have seen in your journey , thoughts and prayers to you and please keep us posted if you can because you are still a durva trailblazer.

 

Finally received #13 tuesday and found out why they didn't have the Imfinzi last tuesday when I went. Seems the Fedex person delivering that days shipment of medications delivered it to the wrong place and the medications sat somewhere unrefrigerated for too long and had to be destroyed. Nothing new to report otherwise

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Very sorry to hear about your update Ron. The best news here is that you have several options available to you for the next line of treatment. Your medical team is being aggressive in stamping out the stubborn little monster.  Keep up the fight...

 

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#11 done. Bloodwork all in normal range. Doc not worried about the nodule in left lung. She thinks it may be inflammation from the imfinzi. Will scan end of November to check on it. can’t wait to hit the pillow tonight. IV Benedryl kicks my butt. 

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Barb-Kudo's on #11, and a plan to rescan in November. 

Tomm-Thank you, ordered my East Cape Te Araroa Manuka via Amazon. 

Charles-Kudo's on #13. I am dumbfounded that a shipment as in more than one dose of Imfinzi was wasted because of a delivery error. WHAT!!!! 

Bob-Interesting article on Durvalumab. Thank you for sharing. 

RonH-What to say, what to say.....I feel emphatically saddened with your biopsy results and yet, I am thrilled that no other progression was noted. Remarkable creatures that we are, adaptation to the new normal is already in a forward motion and you will be taken care of. Sorry for the detour. Please continue to update us on your progress and treatment plan as we all may be subject to post Durvalumab algorithms. Besides, simply stated, we care about your medical welfare and journey.

Waiting 3-4 weeks for molecular biomarker results is a case in point to have it done with original biopsy? Have heard different reasons why it's not done from no insurance coverage to not needed with Stage 3. Just saying.

Blood work ? Mishap. Even with all this checking and double checking, mistakes still happen. Unfortunate. Be an advocate for yourself and continue to speak up if you have an opinion about your care. It does matter and medical personnel do take note of a patient well invested in their care, well invested in their outcomes. 

Some thoughts from this past infusion:

I have elected to fly into another city to receive my care. It costs me, out of pocket, approx $300 in plane fare, taxi and incidentals for each infusion. I am up at 4am for a 6am flight, am getting my blood work by 8:30 and if I'm really lucky, I am receiving my Durvalumab by noon. I am usually back home by 5pm.... that's a good day with no kinks in the system. All my doctor visits and diagnostic testing are dovetailed on the day of my infusions. I have a nurse navigator that assists me in planning, should I need it. I rarely have contact with my PCP here in town but he was caring and gracious enough to give me his personal cell should I need to get in touch with him.

I share this because I don't know if the care that I am receiving is better than if I had stayed in my hometown, but what I know to be sure is that medicine is more than the technical aspect of diagnostic testing and procedures and standard of care protocols. Healing is also dependent on your trust in your medical team, and having the fortitude to fight for and be heard for what you believe is intrinsically right for your care. I pray that my medical team treat me with respect, understand that I am vulnerable and that I need their empathy and expertise to get thru this. With my current medical team, I feel nurtured and heard. I may not always know the right questions to ask, but I sure know how to say, I DON'T UNDERSTAND WHAT YOU'RE SAYING AND WHY.

Thank you for allowing me to share.

With Blessings and Gratitude, DFK

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On 9/18/2019 at 10:03 PM, Tom Galli said:

Ron,

I’m really counting on stereotactic radiation for you. I am recalling my stereotactic experience and there was concern about previously radiated tissue from my conventional radiation. My doctor told us about the risks and explained that despite scientific knowledge, treatment decisions were judgement calls. 

If your radiation oncologist shows reluctance, consult another. Eliminating tumors is far better that tolerating them. 

Stay the course. 

Tom

Just a quick update:

Well I had my consult with my previous Radiation Oncologist (from last year) and she believes that she will be able to use stereotactic radiation for my recurrent tumor. Its about in a perfect location and size for SBRT, in the middle of my right upper lobe and not on the surface near a rib and is also far away from my spine, throat, heart etc. She does want to discuss with her practice partners as well as a thoracic surgeon first before making a final decision to treat or not, but at least I am currently scheduled to be fitted with the immobilization device next week. She has some thinking and calculations to do regarding the number of doses (fractions) she will use due to the same spot being irradiated last year, but is thinking between 6 to 10 fractions over a 2 to 3 week period (not the normal 5 +/- fractions over 1 or 2 weeks). Also I forgot to mention, my Medical Onc told me that there are some indications (not proven conclusive yet) that having radiation treatments while on or have had immunotherapy may kick start the immunotherapy drug again and help it be even more effective. This along with the Med Onc sending my biopsy and blood samples off for biomarker (EGFR) testing for possible targeted therapy treatments in the future puts me in a much better state of mind.

Thanks all....I'll keep everyone posted! -Ron

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Good news Ron. Sounds like a great plan. I personally love radiation and tried to keep going but alas the radiation oncologist said it would kill more than the tumor. 

You got this!!

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Ron,

I’ve read the same about stereotactic radiation kick-staring the immune system also. Google the abscopal effect. Hope your treatment fries that tumor!

Stay The Course. 

Tom

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RonH,

Thank you for sharing your treatment plan and the discussions you are having with your medical team.  Very enlightening and educational for me. Great news on your planned genocide of tumor.

Tomm,

Am loving the Manuka Honey

Take care everyone, DFK

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Hello, I've been busy the last week! Thank goodness. My mind was¬†really going dark. I think I have mentioned my Bipolar type l¬†diagnosis along with my Epilepsy before? Well, I do take medication for both of these disabilities. However, since my Cancer diagnosis Stage lllA this past year my depression has kicked up a few notches! Ya think! And because of my stupid Epilepsy, which has been well controlled for 5 years now with medication, my selection of antidepressants are limited¬†ūüė©¬†A little more history of myself to make this even more a kick in my patootie lol! I am also a recovering alcoholic¬†sober since 01/06/1997 whoo hoo! I have lived a clean and sober life for over 22 years ate healthy did all the right and good things for my body. I managed all my disabilities on a daily basis with the help of my higher power whom I choose to call God, my kids, and some close friends and a few family members and a husband or 2 lol! And most importantly a positive attitude. Prayer and lots of Gratitude. You see the only thing that I could not do was stop smoking, well stay stopped I quit so many times but would always start up again. So I would pry "God please help me to stay stopped this time! I will do anything to not smoke anymore"

BAM!!! Went for my annual physical, PCP sent me for a low dose CT Scan because of my smoking history, found a suspicious looking neoplasm thing, next Pulmonologist, PET/CTscan, MRI Brain, MRI clear, PET scan SUV 15.1 "WTF" 2.1cm and hilar node 1.2cm Metastatic right hilar lymph node. No other evidence of metastatic disease identified. Doc said Stage 1A at this point. Scheduled for VATS surgery RUL. Surgeon said if Lymph node is positive there will be no surgery. I woke up in recovery Lymph node was positive RATS Stage lllA on to line 1 of treatment:            34 zaps of daily radiation 2 rounds of chemotherapy Cisplatin/Etoposide was their drugs of choice I did fairly well, I never had any drugs in my system for years other than my seizure meds and low dose depression meds the occasional pain pill for whatever minor surgical procedure I had. I didn't lose my hair But shaved my head in anticipation I didn't want to be traumatized, what an a-hole move that was, my hair grows very slowly hehe!! The Cisplatin made me pretty danged nauseous but Zofran helped, I had no desire to eat either had to drink Ensure shakes so I could maintain weight, lost my taste buds. Mild espohogiitis, but got some magic mouthwash, I did have to start taking pain pills for that plus a stomach pill the radiation was messing with my inards ugh! I didn't like any of it, was in denial thru most of it, I was in close contact with my counselor, still am. I had a CT Scan almost 20 days after my last radiation tx and my tumor shrank to 1.2cm Yay! the node didn't show up on the scan? so now that brings me to where I am now.... 2nd line of treatment:

Durvalumab I had my #3 infusion this past Monday 9/23 my onc is having me take a 5mg steroid daily to help with my side effects from my last 2 infusions so hopefully everything will just behave, Sorry for the long winded post, but I just wanted to let y'all know my history and I couldn't actually find a spot for it here, but hey I'm not shy. I did have my biomarker testing done when my biopsy was done, but that I will put in another post, because that in itself (the pathology report) is quite another animal, but one thing that did calm my nerves a bit is that my PD-L1  high expression is 90%

Good nite all Roseann

 

 

 

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Roseann,

For sure one of the most difficult parts of having a cancer diagnosis is the effect on ones mental state. Granted the physical hardships with both the disease as well as the treatments are difficult, but it is so hard to maintain a positive outlook on anything, especially when after a few steps in a positive direction all of a sudden there is a step backwards. In the end, I do believe it is critical to do whatever necessary to maintain a positive outlook and a willingness and desire to fight back.

Hoping and praying all the best for you and don't ever worry about venting here, that's why we're here, to help each other. By the way, I didn't loose my hair until the consolidation chemo after the initial 7 weeks of concurrent chemo/radiation. There was several weeks where I didn't have a meal without hair falling into it! I was kind of hoping for the Telly Savalas look, but ended up with an uncanny resemblance to Uncle Festor on the original Adams Family TV show.¬†ūüėÜSo glad it grew back....even if it is curly now.¬†ūüôā

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As it seems to always be the case, one or two steps forward, then comes a step backwards. The latest today was that my Radiation Onc spoke to her colleagues/practice partners, who decided that they want me to have a EBUS before any SBRT. The Radiologist reading my last PET scan had noted the following:

Quote

Metastatic right hilar and mediastinal lymph nodes seen on the prior PET/CT have resolved. A subcentimeter left paratracheal lymph node has increased FDG uptake that is indeterminate but slightly greater than background FDG activity in mediastinal blood pool. The small size favors a reactive lymph node. 

My Medical Onc was not overly concerned about it when I questioned him about it, but the Radiation Oncologists sure are, so now I have to wait for the Pulmonologist to schedule me for another EBUS with needle biopsy of that node at the hospital, meaning at least another week or two delay. Some days you just can't win!

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Sorry Ron. This cancer road sure is bumpy. Better to have tested than a surprise later. 

Hang in there. 

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Ron H

So sorry, for the backward movements.... on the other hand, all of your results should come in together. Your Bio marker testing will have been have been completed. The lymph node/nodes will have been biopsied and hopefully a new treatment plan will be in place! We fight the fight! Thank you for your encouragement¬†ūüėÄ

Namaste Roseann

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Sorry to hear this Ron!! Hang in there!!

Hoping you get good news and can move forward in your treatment!!!

 

Best,

Ro

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