RonH

Tomm
Great news.....keep up the boring. I too have had it pretty easy (comparatively) with minimum side effects and symptoms and am grateful. But I think if you were to ask my oncologist, he would vehemently disagree and might call me the biggest whiner he's ever met. Oh well, if the shoe fits......
Sillycat1957
Good words. I don't think you expressed a single thought that hasn't run through, or more accurately, torpedoed thru our minds. Tis what it is.
I have a little Gratitude shelf at my bedside that is filled with miniature  knickknacks that some of my fav people and family have gifted to me thru the years. My 3 grandkids are represented by MY LITTLE PONIES (Their choosing); Princess Luna, Princess Celestia and Rainbow Dash and I have painted rocks and beach glass and crystals and agate stones and Mario Helicopter and Luigi Ice Flower, Three Stooges Minatures and more.... just a whole hodgepodge of fond silly memories of when these tokens were given to me. And every night, and every morning I look at my treasures and I say a prayer of gratitude for another beautiful and blessed day. I say thank you for all the love, prayers and blessings that I receive. It does lift my spirits and gives me strength to (as Tom would say) stay the course.
Kate7617
You are in my prayers......please reach out and let us know how you are doing and what course if any, you are taking. We all care. Look at the dialogue you provoked ❤️
Take Care All, DFK
 
P.S-Vocal Cord surgery went seamlessly smooth yesterday....thanks to my guardian angels, spiritual and human. Just taking care of this after 6 months of waiting and fretting and worrying  has lifted my spirits and actually lowered my stress levels considerably, which in turn has tamped down my chest pains, my throat pains and headaches.....Dear, dear, stress is a horrible victor.
I am on 5 days of voice rest, absolutely no talking....WHAT!
I will give a full report after my postop check as well as Neck and Chest CatScans to be done on 11/26/19 to check as to  why left laryngeal nerve was impinged. Progression is the worse case scenario, or could be a simple nodule, or maybe no determinable reason at all. For some strange reason, I am okay with it all. How apropro that Thanksgiving is right around the bend. I remain optimistic and thankful.

Charles,
Reality, yep REALITY, it blows, thinking every 3 effin seconds some days, how my life is no longer mine ugh! Reality.... Courage it's here somewhere, just not today, my chest is hurting too much, it never did before? ugh! Reality...... they tell me at the cancer center if the pain is constant worry, if it comes and goes keep an eye on it it's most likely muscle ugh!
Kate7617
I so understand how you feel about the side effects of Durvalumab, it seems after each infusion I have a completely new whole set of different ones altho they are not as severe as yours are, Bless your heart ❤️ my being depressed and constantly stressed out heightened my pain level and for what it's worth the 5mg steroid as  much as I didn't want to take it nor believe that it would help me actually has, with my foot, leg, knee, elbows, and those muscle pains. However, my middle back C4 and C5 are getting worse that showed on my scan, my neck and now today this new pain in my chest, ugh! So yeah Durva sure does mess with ya! My Oncologist says the same there is nothing else for stage 3a or 3b. My scan showed definate reduction in the size of my tumor and suv uptake which proves the cancer is receding at this point. But like Charles says the REALITY is OMG! this stuff really hurts me, a lot! I'm sorry about the skin cancer too, is that from radiation or sun exposure? Did the doc say why or where that showed up? I just had infusion #7 I think the biggest thing is before my diagnosis I only took 2 medications daily for my 1 pill for Epilepsy, 1 for Migraines, they were not mood altering in any way, The only side effects were  weight loss because the Topamax caused loss of appetite, so I stayed nice and trim. 😃 making my diagnosis for nsclc longer to detect. Anyway my point being I don't like taking medicine my body rebels it seems! IDK that's why I think I get such severe reactions sometimes, I breezed thru some pretty harsh chemo drugs concurrent radiation Cisplatin/Etoposide, but my mind was made up then kill the beast, hardly any side effects! But the Durvalumab is different still trying to wrap my head around it, and it will be that way until my last infusion I reckon. LOL! I hope you make the decision that is right for you Kate, I would do some serious soul searching and praying on it. I have a prayer box my daughter gave me, but yiu can make a prayer bag or a box if you like:
here are the instructions: You can use whatever Entity you believe in God, Buddha, Allah, you get my drift
Prayer box or bag: get a small box write down on a piece of paper what ever is bothering you something that you can't deal with on your own, fold it up place it in the box while saying a simple prayer "God please take this! I can't handle it! You can I can't I think I will let You" Amen If you use a bag, when I did in the past I used a little paper bag and taped it to my refrigerator lol! And when I was asked what it was for i said none of your business! 😃
Tom and DFK great wisdom there too!
As always just suggestions and offers of some hope and encouragement
Take care, keep fighting the fight
Roseann
 

Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.

Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.

Kate7617 - If you haven't had a biomarker test done, insist on it. I spent 10 months on Durvalumab (18 infusions) only to find out afterwards that I was PDL-1 Negative and EML-4 ALK+, so according to studies and all reports I've read, Durvalumab had little or no hope of working. I have since moved on to a Targeted Therapy, which by the way is no picnic either and in many ways, I am having more side effects with it than I did with Durvalumab. The only nice thing about that 10 month experience is that I became acquainted with some very nice and knowledgeable people here.

DFK,
I meant to send this earlier....please tell your son that we all say thank you for his service to this country as a Navy SEAL. 
Ron

DFK,
I meant to send this earlier....please tell your son that we all say thank you for his service to this country as a Navy SEAL. 
Ron

Our prayers are with you next week as you head into surgery. You know in all those years in healthcare I saw a lot of posts on LinkedIn (most of them pointless) however one of them seems to stand out: the road to success is never a straight line. It’s fraught with unexpected twists, turns, ups, downs and just plain curve balls that can throw anyone off course.  The difference to achieving the goal is perseverance in the face of uncertainty & adversity.  That sounds pretty much what we’re all doing here every day.   Unlike our working lives, lung cancer doesn’t get to go on vacation, so we have to keep going forward.   
I hope you have a speedy recovery.  
Michelle
 
 

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

DFK - Yes the reduction by my Cardiologist in  Metoprolol Tartrate beta blocker dose by 50% has seemed to stabilize the Bradycardia. It still dips to below 60bpm sometimes into the upper 50's, but that is rare and seems to have settled in normally at 68 to 72 bpm. I had read somewhere that some people had to have a pacemaker implanted to stabilized their heart rate while on Alectinib so I was concerned. Right now my biggest challenges, side effect wise, is the constipation, fatigue and weight gain. The good news was that this weeks blood test results all came back within the "normal range". I was a little worried regarding my liver function tests as they were initially very elevated when I was first started on Durvalumab, but this week the AST & ALT levels were in the middle of the normal range after 2 weeks on Alectinib. There was no TSH check this week as the ONC will only order the thyroid tests once every 4 - 6 weeks. Still have the itches on my legs, but after a year of living with them due to the Durvalumab, I hardly even notice it anymore.
Had my fill of leftover "trick or treat" candy today. I read that taking the Alectinib with high calorie high fat content food helps the body absorb it, so I did my part today! Now I am looking forward to Thanksgiving before too long. 🦃
Have a great weekend all.

Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 
Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).
The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.
My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 
Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!
Have a great weekend all.

#15 infusion yesterday, all blood work in normal range  & TSH 3.71.  No side effects, no weight gain, no fatigue, no other health issues no other medications except levothyroxine 150 mcg. 
 I take 12 natural supplement and 1/2 gram CBD (not from hemp). Doctor says I'm boring. I read that no alcohol was allowed with Durva  but this week the Doc says I can have a beer but don't drink enough to have a hangover. He said alcohol will not interfere with Durva,  I'm getting a chocolate beer this week. Anyone else told it's OK to have a beer? 
A big Thank You to those that post here to show us what can happen and how to deal with it. It would be nice if people that read this and are on Durva share their journey with others, it will help others.
enjoy the season
 
 

Barb, actually comparing my CT just before I started the Immunotherapy (at the very end of October) and my CT after the Durvalumab break (at the very beginning of January) indicated continued regression of all the tumors. They were still shrinking. Most likely I was still benefiting from the earlier chemo and radiation at that time, and there was no effect, negative or positive, from being off or on Durvalumab. Since I now know that I am PDL-1 Negative and ALK Positive, the Durvalumab had little or no chance of working anyway (or so the studies indicate).Basically at least in my opinion (and you know what they say about opinions) is that the cancer was stopped by the CRT earlier last year and I then had about 12 months before recurrence.
Personally, if I was in a lot of pain, I'd probably demand to take a short break from Durvalumab. Depending on which document you read, the half-life of Durvalumab is ~17 days, so it takes weeks and weeks to actually completely clear your body, but and a big but. this is a decision that only you and your team should be making. Even the documents for Imfinzi gives medical guidance of when to "temporarily suspend" Durvalumab treatments. One concern is that the manufacturers guidance for some side effects if the grade high enough that they recommend to "permanently suspend" treatments. I don't see pain as being on the list, but I have not studied it either. I doubt that there is any actual reliable data of what overall effect it has by taking a 1 or 2 month break in the middle of the treatments. As such, I would think that the MD's would tend to err on the side of caution. Perhaps the Med Onc would agree to a dose reduction for several months to see what happens.??

Barb,
I took a 5 to 6 week break from Durvalumab due to elevated AST and ALT liver function test levels right after my initial two infusions of Imfinzi. I had also experienced many of the other side effects, such as the itching and the muscle pains. I however didn't go on the steroids and just let nature take its course. After the 6 weeks or so and I was feeling normal again (at least as normal as I usually am) and my liver function tests were back to within the acceptable range, I restarted the Durvalumab. The side effects returned again within a few weeks, but at much lower levels the second time and for some reason it never affected my liver again, so I continued taking it.

Thanks Barb
I haven't really investigated it, but I did read the other day that many CBD's still have a very small amount of detectable THC in it. Also in the same article, while some of the testing labs use more sophisticated drug tests that can differentiate between the CBD positives vs the cannabis THC positives, many don't, especially those companies that do the random screenings for companies. I personally will err on the side of caution until I retire. When we questioned it at my work, our supervisor said that he didn't know the specifics, but that this policy clarification had just come down through the various levels of management that the employees were not allowed to use CBD products. I suspect that because I work for a large company, that we have many vehicles on the road, many employees that deal directly with the public and then many other employees that work with highly energized pieces of equipment, that the company wants absolutely no risk to or liability from its use. I am sure if we asked and said that it was even prescribed by an MD, that we would be told to go out on sick leave.

got results from Friday's pet/ct scan and number 16 in the veins today (Tuesday the 5th) and was quite surprised by the scan results, moderate shrinkage continues, uptake down from 6.3 to 4.7, plueral effusion and pericardial effusions have resolved, no hypermetabolic lymph nodes were identified anywhere, and no new pulmonary nodules identified, and no new or enlarging FDG-avid adenopathy throughout exam so improvement continues, and so does the Durva, CBD oil, and Sodium Bicarb breathing treatments and protocol mixtures. As far as side effects, they remain debilitating. Massive inflammation in lungs and back where they fired radiation but no pain or noticeable damage but no doubt quite a bit of scarring. More coughing, fatigue, and exascerbations but to me this is secondary to the real deal, the Cancer is still dying and I am not so onward we go toward number 17 and the complete destruction of the BEAST!   hooorah!

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

DFK - Yes the reduction by my Cardiologist in  Metoprolol Tartrate beta blocker dose by 50% has seemed to stabilize the Bradycardia. It still dips to below 60bpm sometimes into the upper 50's, but that is rare and seems to have settled in normally at 68 to 72 bpm. I had read somewhere that some people had to have a pacemaker implanted to stabilized their heart rate while on Alectinib so I was concerned. Right now my biggest challenges, side effect wise, is the constipation, fatigue and weight gain. The good news was that this weeks blood test results all came back within the "normal range". I was a little worried regarding my liver function tests as they were initially very elevated when I was first started on Durvalumab, but this week the AST & ALT levels were in the middle of the normal range after 2 weeks on Alectinib. There was no TSH check this week as the ONC will only order the thyroid tests once every 4 - 6 weeks. Still have the itches on my legs, but after a year of living with them due to the Durvalumab, I hardly even notice it anymore.
Had my fill of leftover "trick or treat" candy today. I read that taking the Alectinib with high calorie high fat content food helps the body absorb it, so I did my part today! Now I am looking forward to Thanksgiving before too long. 🦃
Have a great weekend all.

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

Roseann - Definitely old enough to remember Wolfman Jack! If I heard a recording of his voice again I'd immediately know exactly who it was. I guess we're showing our ages here. 😉 - Ron

Hi Ron. I remember Elizabeth well lol! I hope the side effects are just your body adjusting to the new medicine. But there are other drugs for ALK+ people too, that may be better for you right? Good luck and God Bless!
Keep kickin' cancers *ss 😃 and have a nice weekend
 

Hi Ron-
Yep, all of those side effects!  The only thing I can say is that it’s a worthwhile trade off  For some reason Alectinib is dosed at the highest “tolerable” in a one size fits all category.  Approximately 3/4 of patients get stepped down to a lower dose which decreases most adverse effects.  
Hang in there through the “fine tuning process” with all those upcoming labs! 
Michelle

Hi Ron. Lol, I’m sorry to say I remember that show. Sorry to read about your side effects. Hopefully they are temporary and/or controllable. It certainly is crazy how some people have no side effects or very little and others get more. Hang in there-we are all fighters and we are all going to win!!

Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 
Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).
The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.
My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 
Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!
Have a great weekend all.

Just wanted to update everyone on my transition from "Immunotherapy" with Durvalumab to "Targeted Therapy" with Alectivnib. 
Well welcome back "the itches". Just like after the first weeks on Durvalumab, after 9 days on Alectivnib, the itching has returned in earnest. However so far, no actual rash, and the itching is primarily on my legs and arms. One of the other mentioned possible side effects is "weight gain". I can see why, I now seem hungry all the time now. Luckily, in a perverse way, since my sense of taste went away during immunotherapy along with developing a dry mouth, nothing really seems to have any taste to it and forget eating anything dry or spicy, so that holds me back from eating ALL the time. Forget cake, cookies and potato chips, I can't even get them past my mouth (although Ice Crème still works😋).
The above I can handle (I call it will power but others call it just being stubborn), but I am more concerned with the developing Bradycardia.  Having had a heart attack years ago, my Cardiologist has had me on a beta blocker (Metoprolol Tartrate), which slows down the heart rate, I am also in chronic A-Fib with an irregular heartbeat, I now have Hypothyroidism (curtesy of the Durvalumab) which can slow the heart rate, and now the Alectivnib, which also can also slow the heart rate down. For the past few days, seated at rest, my heart rate has slowed from my normal seated at rest of 75 to 85bpm down to 60 to 70bpm, sometimes dipping into the low 50's. Wednesday night while checking my pulse rate on both my O2 Pulse Oximeter as well as my BP Monitor and seeing it dropping into the low 50's the following quote kept coming to mind; "This is the big one! You hear that, Elizabeth? I'm coming to join ya, honey!" (If you know the show that this is from, you're showing your age! 😉 My BP was running just a little low as well, but my BP monitor only alarmed once so I just put on my CPAP and went to sleep. I was both somewhat surprised and pleased to find myself still here the next morning and was for once actually happy to have to get out of bed to go pee. 😂 Heart rate was mid to upper 60's in the morning.
My Onc advised me to keep an eye on it and let them know if my pulse rate stays under 60. About that time I decided it was time to consult with my Cardiologist who immediately had me reduce my dose of Metoprolol by 50%. This has seemed to keep it above 60, but only slightly. 
Don't know if I am looking forward to my bloodwork next Tuesday out of fear that my AST/ALT readings may have shot up just like they did initially on Durvalumab, and my treatments will be suspended. Elevated AST/ALT readings are also a potential side effect of Alectivinib as are muscle pains, tenderness, weakness, fatigue, constipation, nausea and shortness of breath. Boy these various treatments sure share some similar potential side effects!
Have a great weekend all.