DFK
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Posts posted by DFK
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Thank you Bob for your update and info on your new treatment plan. I joined this forum just as you were completing your 26 infusions so I know that your road since has been unexpected, long and challenging. I wish you strength and peace and minimal controlled side effects as you navigate your new treatment plan.
Also, I cannot echo Tom enough....I will be praying for results, praying for results, praying for results.
Hang tight, take care, DFK
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Michelle,
Thank you for your kind thoughts and motivational words......we all can use a little cuddling. My scheduled surgery for vocal chord “plasty” should be a simple same day procedure. My doc said I'll be singing Christmas Carols for my community performances this Holiday season. Now that’s a goal I can live with. No Ave Maria for me but I can do a mean Winter Wonderland.
Take Care all, DFK
- Charles and Sillycat1957
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Good Wednesday to everyone
#22 Infusion is history. Blessedly uneventful, All labs remain within normal parameters. I have been fortunate
As I wind down with just 4 more infusions, I'd thought I give a run down of my personal experiences and side effects for the new initiates who may find themselves on Durvalumab and are learning from our forum. I've only included symptoms that were never present prior to my NSCLC and initiation of Durvalumab.
Itchies-Broke out in a rash to my back about 6 months in. The rash quickly resolved but my itchiness to my back remains. I've had good luck in treating it with Hydrocortisone 2.5% cream and an antihistamine as needed.
Pneumonitis- Diagnosed about 4 months in. From radiation therapy. Had to skip/postpone two doses of Durvalumab and was treated with Prednisone. Durvalumab was resumed, pneumonitis resolved and my pulmonary function tests improved and remain normal. I will be getting all 26 doses of Durvalumab.
Generalized Aches and Pains primarily to my back and thoracic area- Very disconcerting as my chest muscles ache, my ribs ache, my lower back aches. Was told this is due to post chemo/radiation and Durvalumab. Tylenol works but if the pain really hobbles me, Motrin is my go to pain relief. Got my medical marijuana card and purchased some THC/CBD tincture......didn't work for me. Maybe I didn't titrate dosing properly but I just got really stoned and loopy and my pain was still present.
Joint Pain and Joint Muscle stiffness- I've really noticed an "awareness" of finger, toes, ankle and knee pain about 8 months in to my infusions. To be fair, I've had a few tumbles where I have hurt myself but the healing has been delayed and joint pain more pronounced. Again, Motrin seems to help. Had a fall from my bike couple weeks ago. I called it a soft landing since the bike just got out from under me in a mud bog. I've never bruised so extensively. Fortunately, the bruising was the worst of it and my injuries were minor.
Headaches- I mention this because I rarely suffered from headaches prior to Durvalumab infusions. Currently, it's a rare day if I don't have a headache for an hour or two. I do not treat with medications since it abates by itself.
Skin changes- My skin bruises easier and little cuts and wounds take a lot longer to heal. My skin texture seems more fragile and my skin is definitely a lot drier.
Weight Gain- Been a skinny whinny all my life so a 25lb weight gain is significant. My appetite has increased so I've had to pump up my physical activities which has been challenging since...
Faitgue- Has plagued me from chemo/radiation to today. Unrelenting presence, I do the best I can do by maintaining my physical activities and pacing my responsibilities.
Peripheral Edema to ankles, shins and fingers- After months of watching my ankles swell, I finally obtained some Lasix to use on an as needed basis. I had my wedding ring resized prior to my diagnosis so I am absolutely positive that my fingers were swelling and it was not weight gain. Fortunately, the swelling in my fingers subsided and I haven't had and ankle swelling since I obtained my Lasix Rx.
I have been fortunate and have dodged the more serious side effects.
Update on voice hoarseness and ENT appointment- Official diagnosis; Left vocal cord paralysis. Most likely caused by lung tumor impinging on my laryngeal nerve. Though, and here's the rub, usually if tumor is on the right, right vocal cord nerve affected and vice versa, if tumor on the left, left vocal cord affected. Well, I had to be different as my tumor was in my right lower lobe but my left vocal cord is paralyzed. I did have subcarinal lymph node involvement and that may explain why my left vocal cord is affected BUT, to be on the safe side, my ENT MD and Oncologist are now in discussions about either a Pet Scan or Cat Scan to rule out any progression in my left lung.
In the mean time, I am scheduled for surgery next week Thurs to mediate my vocal cord paralysis and hopefully, allow me to get my voice back.
Abdominal Ultrasound to rule out ascites- Results from yesterday pending. I will see my PCP next Tuesday and all my tests and "to do's" should come together before my surgery.
What a journey huh.....one day you're skipping along fine and then BAM, you're slammed and get warped into this medical world of tests, procedures, adverse events, side effects and advocating for your own well being, for your LIFE. My son is a Navy SEAL and he told me I got this, that it was my fortitude and dealing with adversity that allowed him to be the man he is today. Nice words when your world is falling apart, and you sometimes feel overwhelmed, defeated and just plain tired.
So to all my peers on this journey, hang tough, advocate and carry on. We can do this. We are doing this.
Take Care all, DFK
- Rower Michelle, Tomm, RonH and 4 others
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Tomm-HA, HA, HA, HA, HA.....Love the "future's so bright, you gotta wear shades". We all need some belly laughs. Charles, go get dem dere sunglasses.
Barb, keep the faith, and I too hold good wishes that your next half will be uneventful and boring like Tomm has reported.
As a side note, got Lasix to use on an as needed basis for feet swelling......well, well, what do you know? The minute I got the script in hand....2 weeks now......no occurrence of swelling to lower extremities, no need for Lasix. Which is so bewildering as I had been experiencing weight gain and swelling for a couple of months before I requested the Lasix......just another anecdote.
Lovely weekend to all.....take care everyone. DFK
- Sillycat1957, Barb1260, Tom Galli and 1 other
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Tomm-Boring is good, very good. Happy to read as such that it's as smooth sailing as can be expected for you and that your thyroid is behaving.
I took it upon myself to have a couple gin and tonics when friends were visiting......liver labs a week later were within normal parameters and haven't had any issues since. What a conundrum, initiating and executing health choices that will maximize my well being then, for me at least, sneaking in a few cocktails as I throw abandon to the wind. Felt so guilty, I deferred on further alcohol until I can get thru this year of infusions. And no, I did not confer with my MD, but knew that alcohol is not entirely contraindicated, just not a good choice for a body that's already being taxed.
My voice hoarseness or permanent laryngitis will finally be addressed this coming Tuesday. Waited three months for this ENT appt. Dysphonia ( difficultly speaking that can be caused by a physical disorder of the vocal chords, mouth, tongue or throat) , is one of those rare Durvalumab side effects. Just a general term for my ”affliction" but I'm anxiously awaiting for a definitive diagnosis and hopefully treatment so I don't sound so hoarse or sound like Minnie Mouse when straining my voice.
Take care all, thanks Tomm for the update.
- Tomm and Sillycat1957
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RonH-Great to hear you have been tweaked and fine tuned to perfection.....great news on medication titration for a perfect heart rate and liver panel normalization.
Ha, Ha, you'll be in fat city come Thanksgiving, no problem absorbing and metabolizing your Alectinib then.
Thanks for the giggles and good news.
Take Care, DFK
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Good Thursday Evening to all.
I just bagged #21 dose, uneventful infusion. Labs remain within normal parameters.
No change in my side effects, still with the itchies, off and on with the daily headaches and generalized muscle aches and pains persist. I’ve had a few "injuries" from my biking and a few tumbles during my hikes and I noticed my joints where the injuries are, are more pronounced than before the LC diagnosis. The pain, swelling, bruising and inflammation just lingers on and on and on. Sprained my baby finger in August and only recently have I been able to use my hand with minimal discomfort. Ankles and knee joint pain still lingering from fall 2 months ago....this has not been my norm pre Durvalumab.
Since peripheral edema is another side effect of Durvalumab and I have gained some 25lbs since I started on the Durvalumab and my ankles were started to get a little puffy and pitting, my Cardiologist prescribed some Lasix on an as needed basis. My Cardiologist was very clear that my fluid retention was not related at all to my heart, but to the Durvalumab. My oncologist agreed. Though I am active and have not limited my physical activities, my oncologist ordered an abdominal ultrasound to ensure that nothing funky is happening to my liver and that I am not retaining abdominal fluids.....aka ascites.
Fatigue still with me....per my usual, just going with it and doing the best I can do on a day to day basis.
RonH-Thank you for your informative new journey on Alectinib. I wish you only good fortune and future NED. Has bradycardia settled down?
Tomm-Very good to read that your fatigue is under control and your TSH is WNL. NED is awesome.....congrats, well done!
Kate7617-Good luck on your 10/31 CatScan.
Barb1260- Hoping your symptoms have abated with Durvalumab Holiday.
Charles-Anecdotally, I only got #8 and #9 infusions held because of radiation pneumonitis. I was willing to NOT interrupt my infusions but I was told if I did not tamp down my pneumonitis with Prednisone, I had a high probability of developing pulmonary fibrosis in the affected area.
Rower Michelle-Thank you for advocating and representing the LC community with your attendance and input @ CEU Lung Cancer Awareness. Positive results for NSCLC of Durvalumab and Tremelimumab Phase III Poseidon to be published soon. Lots of itty bitty teaser articles are being circulated but I'm waiting for the actual Clinical Trial results.
Silly Cat-I am with you all the way on flu shots......never had one, and currently, don't plan to get one. Never had the flu (knock on wood) and hope my immune system continues to serve me well.
On a lighter note, been busy as heck with house guests and grandkids.....I moan and groan about how busy and tired I am but on some level, it's through the grace of life that I am able to live it so fully.....
With Blessings and Gratitude, Take Care everyone, DFK
- Rower Michelle, RonH and Tom Galli
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RonH
A belated heartfelt thank you for Isabelle49 sharing on Durvalumab forum......Elizabeth and I did some PM as we both live in the same area, are familiar with the medical community and most importantly, discussed her grand daughters upcoming wedding on November 9th.
Take Care, DFK
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Happy Sunday to all,
I argued and argued with my oncologist to NOT take me off of my Durvalumab infusions because of my pneumonitis 8 doses in. He was convinced my pneumonitis was radiation related (4 months since last radiated). He was also convinced if I didn't tamp it down with Prednisone, I had a very good chance of advancing my pneumonitis to permanent lung fibrosis. I requested a Pulmonology consult.
I wasn't giving up the argument and told him, "My Cancer has priority here", where as he replied pretty vehemently, "Nope, today it does not". I shut up and with the blessing of my Pulmonologist, I took a 4 week Holiday from Durvalumab reeling on Prednisone. Booked a flight to Hawaii and spent a glorious three weeks with family and friends. Didn’t hurt that I was flying pretty high on the steroids and really enjoyed myself. CatScan after 4 weeks of Durvalumab Holiday showed tumor nothing but a scant shadow with pneumonitis resolved and pulmonary function almost to pre chemo and radiation status. Was or is the Durvalumab working or was it the radiation that got my tumor to disappear....I haven't a clue. But like everyone else here on this forum, I am "tolerating" this wonder drug with a 20-25% chance of working so I may live progression free longer.
Pain is non negotiable. Give me something to address it completely or give me a Holiday from Durvalumab. (Side note, I was diagnosed with slight gastritis, probably from Motrin 800mg usage for my muscle pains, now I use Tylenol). No disrespect to my oncologist but I don't allow him to diagnose me in areas that is not in his realm. I got pain in my muscles and joints, I'm going to ask for an orthopedic referral. I had shortness of breath, I asked for a Pulmonologist referral. I have hoarseness, I got an ENT referral. He thought I may have some esophagus issues, I was referred to a G.I. Specialist. Hey, I even had a Cardiologist consult because my Pulmonologist knew his limitations with my pneumonitis and knew my heart was being overly taxed.
Durvalumab may be a new drug but immunology and manipulating with T-cells is nothing new. Doctors have resources that are available at their fingertips and specialists/endocrinologists they can confer with, in choosing their best course of action to alleviate you of your symptoms. Though I have specialists involved in my care, my oncologist always has the final say in any treatment plan that is ordered for me.
Anyhoo, that's my two cents worth of soap boxing today. I'll take the hits with Durvalumab, but I expect my docs to help me along to take the edge off of these side/adverse effects without affecting efficacy.
Oh yeah, and there is a P.S. to all of this. I am forever grateful and humbled by the caring of my entire health team. Every two weeks on the day prior to my infusions, I am baking ferociously so my nurses and doctors get a little treat, a little thank you for pulling me along, for all that they do to make my Cancer life as tolerable as it can be. My husbands says I am kissing their butts and buying little favors. I told him nope, it's genuine gratitude for all they do. As an RN, I know how it all works and it's a tough job to be with patients when they are at their worse and how every health care provider can make a difference. A little cookie or brownie after running for 7 hours without a break or food.....Yep, I know the drill.
Carry on.......DFK
- RonH, Barb1260, Sillycat1957 and 1 other
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Good Wednesday to all,
Uneventful #20 put behind me yesterday. Lab results remain within normal parameters.
Persistent side effects:
Itchies-no better, no worse, just there...alleviated with Rx 2.5% Hydrocortisone cream or OTC Allergy pill.
Headaches-Comes and goes, usually tension/stress related to my tightened traps/sternal neck muscles. Having the Infusion port placed on my left subclavian really messes with my neck muscles. If my hand held Homedics Massager doesn't relieve my tightened neck muscles then Tylenol or Motrin does the trick.
Generalized Aches and Pains Specific to my thoracic area-I have continued to experience rib area pain as well as back area pain to radiation site. Seems to me, this is one of those "It is what it is" after having our bodies assaulted with chemo and radiation. This pain is annoying but doesn't affect my attending to my daily needs. If persistent, Tylenol or Motrin works.
Fatigue-This one is a doozy. Slays me everyday but I got to admit, keeping a physical exercise regime does seem to keep the fatigue manageable and allows me to attend to my daily responsibilities. Such a conundrum......”I'm exhausted, let me go exercise”. WHAT!?!?! So I continue to bike for an hour everyday to keep me motivated, to keep me physical, to make me feel like I'm really and truly participating in my care.....(gotta do the self talk because most of the time I just ain't feeling the love to get out there in the elements and ride)
Weight Gain- Haven't gained a pound for a month but I did increase my exercise, and I did cut down on my intake. But the fact still remains that I put on 25lbs since January.
Loose Ends-
Ron-Thank you so much for your informative updates. Hip, hip hooray for moving forward with Alectinib.....I wish you nothing but continued programmed cell death.....go get'em tiger👍
Just a little FYI if helpful for the many comments on muscle aches and pains. My husband is your typical athlete gone old but somebody forgot to tell him.....so muscular, joint and nerve pain is a way of life since he insists on being "too" active. For me, these listed remedies have been beneficial to my aches and pains too. Here's a couple that works well for us.
By prescription only VOLTAREN or DICLOFENAC SODIUM. Non steroidal anti inflammatory. A topical gel that may help with your osteoarthritic joint pain, musculoskeletal pain as well as strains and sprains. Does come in transdermal patches too.
CAPSAICIN (Chili Peppers) cream or patches OTC. Blocks pain messages to nerves. Useful for headaches, inflammation and nerve irritation.
LIDOCAINE 4% Patches OTC or Rx for stronger dosing-Numbing agent for joint or muscle pain.
CANNABIS CBD and THC Balm-We we’re gifted with a jar of the real deal. I tried it on my back muscles where I can feel the tightness and nerve irritation...my back felt better but nothing more significant than any of the aforementioned treatments.
Thank you all, Blessings and Gratitude for our sharing and caring
DFK
- RonH and Sillycat1957
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Barb, Just a bunch of pleuritis???? You make it sound like a walk in the park. Pleuritic chest pain is pretty darn fierce, usually brings people to their knees. Junk that you're 12 doses in with a case of pleuritis but great that there's no P.E., blood clot or pneumonitis. Sometimes the inflammation of the pleura/lining increases the "lubrication" and fluid can build up.....NSAIDS significantly help as well as rest but good to be aware if symptoms worsen because of fluid buildup. Take care now, enough excitement for a Sunday. Rest well...DFK
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Good Saturday Everyone,
Wow, what a dazzling amount of exceptional info exchange. Thank you everyone for sharing, for helping me to understand more of this very complicated journey we're on. The minutiae of experiences, details shared and helpful tips in maneuvering procedures, medications, helpful web sites and symptoms gives me hope for a better tomorrow, an educated tomorrow. Thank you, thank you, thank you.
I have also spent some time getting to know some of you who have posted by going to your personal Lungevity websites and reading your introductions. Inspiring to know your personal stories and what you have all gone thru and how you continue to share your stories so newbies like me can learn and hopefully share too.
Michele-Thank you for GO2 You Tube Channel. I have watched a couple of video's and now have them on my radar. You are a wealth of information....thank you again for sharing. Makes me want to be a "Michelle Mutant" too 🥰
RonH-You have a gift of articulating your experiences with knowledge, humor and humility. So yes, please keep us "Durva's” in the loop. I remain perplexed as to the slight difference in standards of care when diagnosed with LC, so as you had mentioned in your previous post, from a patients perspective, thyroid monitoring and biomarkers can and do impact your plan of care and should be done at the start of care unless your medical team has a compelling reason not to do it. Great that you will be discussing with your MD as it may help future patients.
Barb1260- Great on starting Wellbutrin. Smart to know when wearing them big girl panties just doesn't quite do the trick. I too have experienced more leg/toe cramping in the past year than ever before. Not sure whether to chalk it up to getting older, more bike riding or Durvalumab. I never thought I was capable of moving lightning fast but those hamstring or calf cramps makes me bounce out of a dead sleep, out of bed, quicker than I thought was humanly possible. Anyhoo, my labs are normal and fluid intake adequate so I'm riding this one out for now.
Ladies- Haven't heard too much from our men folk about weight gain....maybe it's a chick thing but I have put on a good 25lbs since starting Durvalumab. Like most of you, I was on the slender side and my weight was unchanged for a good 40 years.....this new me feels clunky and most irritating of all, none of my clothes fit. Small irritant for sure in the big picture but there none the less. This past week was the first time since January, I did not gain a pound or two prior to Durvalumab infusion. Oncologist said my weight has stabilized....REALLY! I don't think so, I have had to cut down on intake and increase my exercise program. I keep looking for fluid retention so I can push for a diuretic but for now, no obvious fluid retention so I'm staying the course with more exercise. Challenging at times when fatigue is my new bff.
Kate7617-You are in my thoughts and prayers.
Take Care all, DFK
- Tom Galli, RonH and Sillycat1957
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Good Tuesday to Everyone,
#19 blessed uneventful infusion. All labs remain within normal parameters.
Side effects at this point:
Itchies remain though localized to radiation area on back
Chest area pain front and back...some muscle, some nerve. Alleviated with less activity and Motrin as needed
Fatigue comes and goes, I just go with the flow.
EGD today-Esophagus perfectly normal, ENT appt. next month to check my vocal chords. Voice still a little hoarse and squeaky.
Kate7617-I am praying that you find your way and make a decision that sits well with you.
Kleo-Read your postings.....you're fierce; very admirable. Congrats on progress so far with your many unexpected detours.
Take Care Everyone, DFK
- Tom Galli and Sillycat1957
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oops, typo....NCCN.org for National Comprehensive Cancer Network
DFK
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Rower Michele-Thank you for biomarkers 101 and resource info. Informative, yet you made it very understandable. Somewhere in my arsenal of literature I have the 2019 NCCN (National Comprehensive Cancer Network) Guidelines and treatment algorithms for all biomarkers and for those with no biomarkers. If any one is interested I can find it and post. I refer to the NCCN as my Cancer Center uses their guidelines for care. Website is NNCN.org.
Kate7617-Three to four months post CRT, I developed shortness of breath and lowering pulmonary function scores. Bottom line, diagnosis pneumonitis where my original tumor had been. Oncologist felt cause was radiation, Radiologist felt it was the Durvalumab. I was taken off Durvalumab (doses #8 and #9 held) for a month and placed on high dose Prednisone. My shortness of breath was immediately alleviated with Prednisone and four months after that episode, my pulmonary function tests are nearly pre chemo and radiation normal. Been very fortunate to dodge any other pulmonary problems. I'm coming up on #19 Durvalumab tomorrow and plan remains to receive all 26 doses.
Thank you everyone for informative posts and support.
Take Care, DFK
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Roseann-Link did not work for me.
Hope you took a break from Dr. Google and freed your mind for mindless trivialities like Saturday Night Live with Billie Eilish...LOL🤪
Take Care, DFK
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Roseann-Great on 5mg for pre treatment Durvalumab to calm the savage beast. No KRA’s for me. Wouldn't Keytruda be listed as your next option because of your high PD-L1 expression?
Here is profile from my EBUS:
EGRF Mutation-Not Detected
EGRF Exon 18- Not Detected
EGRF Exon 19-Not Detected
EGRF Exon 20-Not Detected
EGRF Exon 21-Not Detected
EGRF T790M- No evidence of mutation
Not a candidate for TKI’s.
PD-L1 22C3 FDA- No Expression, 0%
Not a candidate for Keytruda ( Pembrolizumab)
ROS1 Gene Arrangement 4%-Represents Negative Result
BRAF Mutation-Not Detected
I did not get tested for KRA nor ALK........Hmmmmmm, that's something I can ask my oncologist about. My 26th dose of Durvalumab will be up in January. I only included this info in my post for others to read and compare as which biomarkers were done or not done on their end.
Take Care everyone, DFK
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Roseann-I loved getting to know you via your writings. You have spunk, humor and spirit, thank you for sharing. I stopped smoking cold turkey after 50 years....it was hard but I was determined...Six months later I get my Stg 3A diagnosis.....talk about a WTF moment. I remember telling my doctor that dealing with the anxiety of my diagnosis was really hard without my trusty crutch...the cigaret. Oh well, seems like that was lifetimes ago. Sounds like you have been able to find a happy medium and balance with your support "drugs" to continue with your Durvalumab while quieting your other medical challenges....always a balancing act, but you're pulling it off.
RonH-Yeah, couple steps and time now added to the start of your treatment but I think, it's a smart move to get the EBUS and cover your bases thoroughly before going forward. You're in my prayers....hang tough🙏🏻
Take care everyone, Blessings to all, Gratitude for today
DFK
- Sillycat1957, RonH and Rower Michelle
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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
- Rower Michelle, RonH, Tom Galli and 1 other
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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
Durvalumab
in IMMUNOTHERAPY
Posted
Hi Darla,
How frightening it must be for you to be uninformed about your options. I can give you a full detailed report next Tuesday after my ENT pre-op appt. But here is what I can tell you that I learned so far. I will discuss specific options with my surgeon on my Tuesday appt. and share more with you.
You need functioning vocal cords to speak, swallow effectively and cough. I had been reporting my Minnie Mouse voice for months with a loss of volume and pitch to my oncologist. I finally got a referral for ENT after 3 months of symptoms and waited another three months to see the ENT.
I don't know what option I will chose but your paralyzed vocal cord needs to touch and meet your functioning vocal cord to be effective so here are the two options that were briefly explained to me.
1) Bulk filler. In layman’s terms, they will inject my paralyzed vocal cord with a filler to move it closer to my functioning right vocal cord. This is not a permanent fix but can hold up for up to 3 years.....I will get more details later.
2) Implant. Surgically implant a "structure" to move the paralyzed vocal cord closer to the working vocal cord. This can be a permanent fix.
3) Both procedures are done under General anesthesia so you will need pro-op clearance which is all the hoops I am now jumping thru.
I have experienced a burning sore throat sensation on both sides of my throat for months. It may be on my right side then it may be on my left side. I just chalked it up to life in the cancer lane....another pain I just have to live with.....been gargling with salt water and baking soda.....if anything to psychologically feel like I'm doing something worthwhile by decreasing oral bacteria count and soothing my throat.
I've been using Manuka Honey as recommended by one of my fellow Durva's when there was a question with the integrity of my esophagus. Well, my esophagus was just fine but I do find it soothing to take a teaspoon if my throat hurts.
Also, just a side note, your vocal cords close when you are swallowing your food. When one is paralyzed, there may be an opening and there may be a problem with aspiration of food/liquid to your lungs. I noticed that I had terrible coughing spasms at times so I purposefully would eat slower and not stuff my mouth with so much food, and swallow slowly.
Also, if you need to cough up phlegm or clear your throat, your cough may not be as effective and you may strain your vocal cords if coughing violently. I say this not to scare you but to know what to report to your healthcare team if your are having problems. We are already up to our eyeballs with treatments and stress and if another side effect or problem can be averted, let’s do it.
You're wise to reach out and I will give you more information when I get it, and if you have any other questions....ask away.
Take Care, DFK