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Steff

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  1. Like
    Steff got a reaction from Samanthagg in Mom newly diagnosed with Stage IV NSCLC   
    Katum31,
    Hi and welcome.  So many of us know all too well the fear, anxiety, anger, and sadness you are feeling about your mom's diagnosis.  I was buried in these emotions when my mom was originally diagnosed and then even more so when she was diagnosed with her recurrence.  Like your mom, my mom is young too (61 years old at diagnosis, almost 65 now).  My mom was also a late-stage diagnosis.  Your question about what to expect is a good one...I wish I could help more, but everyone is so different when it comes to treatment side effects.  Here is what I can tell you about my experiences, maybe it will help a bit.
    Brain radiation - my mom's best friend and my uncle had cyber knife for brain mets from lung cancer - both did well with it.  The major side effect was tiredness.  My cousin's wife just had whole brain radiation and spot radiation for mets from breast cancer.  She's only in her 30's, but all she experienced was some tiredness.
    Radiation on the hip - my cousin's wife is also going through radiation for mets to her hip (breast cancer).  She was in intolerable pain from the bone mets.  After 2 sessions of radiation, her pain began to get much more tolerable. She had no real side effects.  She will have periodic radiation to that met for a long time as she has the most aggressive type of breast cancer - they are just trying to help with quality of life at this point.  Luckily, non small cell lung cancer is not as aggressive.  
    Chemo - my mom has gone through 2 different bouts of chemo.  The first time she did great, the second time, not so great.  One major determinant of chemo effects is the type(s) that your mom will be getting.  Do you know what chemo(s) she will be getting yet?  I also personally feel that the patient's overall health and state of mind can play a crucial part in how bad side effects can be.  With the 2nd bout of chemo, my mom was already having other health issues that got worse once chemo started.  But my mom is a VERY strong person.  She pulls through all of these health issues like a warrior.  I am happy to hear that your mom is a warrior too.  
    The best piece of advice I can give you as a caregiver/care advocate is to arm yourself with knowledge.  It was my mom's job to be the patient and my job to be the knowledgeable one and advocate for the best care she can get.  There's a lot of "crap" out there posing as lung cancer "facts" and it's hard to sift through what is good info and what is crap.  My suggestion is to start with LUNGevity's website..."Lung Cancer 101" is a great first page to check out and go from there.  Also, reach out to us.  There are so many survivors here that can likely answer just about any question you have.  We are here for you. You are not alone.
    And finally, I want to reassure you that there is hope. 5 years ago, a late stage lung cancer diagnosis was a likely death sentence, but NOT TODAY.  Get your mom going through treatment and ride the crazy roller coaster of life with lung cancer, that's all we can do.  Advocate, take good notes, and appreciate all of the time that you have left with your loved ones - something we should be doing no matter what.
    Take care,
    Steff
  2. Like
    Steff reacted to Lindsay in Durvalumab   
    Good morning! 
    I wanted to share my CT results with you guys. This was my first scan since starting treatment in April (I'm getting treatment monthly, so this was #4 for me, which I guess would be #8 if I was going biweekly) and my tumor is down to 1.3 cm. 
    I started at 5 cm back in December 2019 when they found it,  chemo and radiation took it down to 3.8 cm, and now I'm down even more. I'm so happy with these results! 
    I had hypothyroidism before starting any of this journey and my levels were jumping all over the place, but seem to be leveling out now which is good. No other side effects to really report aside from a sour stomach in the mornings which my onc is not too concerned with. Treatment #5 is on Thursday, then more waiting!
  3. Like
    Steff reacted to D iane in Small Cell Diagnosis   
    Well after the Neulasta shot and treatment last week, husband seems to be doing well.  He's not taking many meds, he's tired of course and in some pain but he is handling it with Tylenol/Advil.   He seems to be coughing a bit more with more mucus yet not enough that he's out of breath or anything.  It could just be me worrying!
    CT scans of chest and lower abdomen are scheduled for 6-Apr with our next appointment later that week.  This is week #3 for me WFH (working from home).  We're laying low in the meantime.  Will update you all after his scans.   Everyone stay safe and well!!!🙂
  4. Like
    Steff reacted to D iane in Small Cell Diagnosis   
    Hi everyone.   Hope you are all doing as well as can be in this mess!   Husband was cleared today to start cycle #7 tomorrow.  His platelet count was 56K 2 weeks ago,  86 last Thursday and has recovered to 196K this morning.   Can't tell you how terrified I am of him being so vulnerable thru the steroids, chemicals, and then the dreaded after effects that will last at least through the following week.  We will do our best to stay totally isolated from the world.  I am able to work from home and have been since last Monday.  I am NOT allowed to be in the treatment room with him.  The lab next door is only being used right now for the oncology patients.
    I'll update throughout.  We are hopeful to reach a goal of getting through this cycle, then scan, and IF by the grace of God his disease is stable enough, he will be able to receive the immunotherapy infusion only for awhile.  I guess until next scan?  I can't go that far ahead.  Going one day at a time.  He is doing well and seems up and ready to go with more chemo.
    Best wishes to all, stay well.
  5. Like
    Steff got a reaction from DFK in Durvalumab   
    Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol
  6. Like
    Steff got a reaction from Tom Galli in Durvalumab   
    Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol
  7. Like
    Steff reacted to Barb1260 in Durvalumab   
    Well here I am waiting for #22. Saw the onc. She also states CTs are better than PETs and she’s not worried about it. Asked her how will we know if I get to NED. “I consider you NED and you are all scar tissue”. Woohoo 
  8. Like
    Steff reacted to Tomm in Durvalumab   
    #23 done last thrusday, blood work in normal range.. just some fatigue on the day.
    Barb ... how was your #22? Hope your doing well.
    Money talks. But all mine ever says is goodbye
  9. Like
    Steff reacted to Grahame Jelley in Durvalumab   
    Hi Grahame here 
    #2 done and dusted on Friday. Bloods all at normal parameters . Scan prior to commencement  of #1 infusion showed 2 mm reduction in Lung primary and 5 mm reduction in R4 contra lateral node as result of radiation and chemo. No new disease. Next scan 3 months. So far”touch wood” minor side effect of mild dry cough , midday fatigue and minor aches and pains . Hope that side effect profile remains minimal. 
     
    great support on this forum. Thanks 
     
  10. Like
    Steff reacted to Barb1260 in Durvalumab   
    Hi all. #21 done Thursday. Blood work ok. Just a little tired so made myself be lazy all weekend. Don’t know what it’s going to be like mentally after this is done. 
  11. Like
    Steff reacted to BridgetO in Durvalumab   
    Flu sucks. Yep, get the flu shot. if you get the flu anyway after the shot, it will  be less severe, or that's the theory anyway, And the flu is depressing.  Your husband is right--at least partly- you will be better. I think there can also be an end-of-treatment depression effect. Kind of like post partum depression but no baby. We get focused on getting through treatment and it keeps the mind and body occupied. We have these frequent appointments, scans, tests etc, and then it all stops and now what? We can feel like we've been cut off or set adrift to deal with the new normal. It can be disorienting.  If it's affecting you, it will get better, too. In the meantime, feel free to come on this forum to complain, vent, grouse or whatever you need to do. We get it. It's OK.
  12. Like
    Steff reacted to Barb1260 in Durvalumab   
    Michelle-guess it was the heels because it’s much better today. Didn’t see the onc today but got #19. And I lost 1 lb so woohoo-gotta celebrate the small things. 
  13. Like
    Steff reacted to D iane in Small Cell Diagnosis   
    We saw both the nurse prac. and the MO today. His platelet count was a little low on Tues, so they did another draw today and it has recovered to normal level.  So, he's all set up for 4th cycle starting Monday.  Being told he will probably do a good 6 total treatments.  They gave me the CT scan orders today and he is scheduled for the 30th.  This is the scary part.  Waiting, wondering, and having to undergo such strong medicine and it's side effects.  Dr. said he is tolerating it well and told him to keep up the good work.
    I know it's probably too much to expect a full remission, but wouldn't that be great?  Trying not to have too high of expectations but praying the fire inside is knocked down to a slow smolder. 
    I'll be back later with results.  Take care.
  14. Like
    Steff reacted to DFK in Durvalumab   
    Good Wednesday to all,
    Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. 
    Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. 
    I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole.
    Enjoy your day and greet it head on with gratitude.
    Take Care, DFK
     
     
  15. Like
    Steff reacted to Tomm in Durvalumab   
    #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
     
     
  16. Like
    Steff reacted to Tom Galli in Welcome Armed Forces Veterans of the United States   
    US Armed Forces Veterans, welcome here!
    I'm a veteran of 21 years on active duty in the US Army, a lung cancer survivor, and a Lung Cancer Support Community (LCSC) Forum Moderator. I'm proud to declare our support community is now open to veterans and those that support veterans in treatment.  I'll be your host but our entire LUNGevity community and Foundation is also on board. Together our expertise in all things lung cancer is wide and deep.
    How does this work? Most start by reading information on various forums, and you are most welcome to read in. If you want to contribute or ask questions, you'll need to register for our community. It is a simple process and details are here. Once registered, you'll be able to post on forums. You can choose any forum for your first post.  Most choose Introduce Yourself . You can make your first post in that section or here in the Veterans Forum. We'll find you.
    I suggest you tell us details about your diagnosis and about your treatment plan. Revealing this information allows us to muster responses from folks who have your type and stage of lung cancer. Unfortunately, lung cancer treatment is complicated and treatment and side effects vary with the type and stage of diagnosed lung cancer. This is also the place for questions about treatment in the VA Healthcare System. We'll help with that difficult process and have tips and tricks to available to assist. 
    Most importantly, this forum's fundamental purpose is to demonstrate that you are not alone in this battle.  We are still in the fight! Once again, welcome to LCSC!
    Stay the course.
    Tom
  17. Like
    Steff reacted to Robert Macaulay in Durvalumab   
    Thanks Michelle
    Just heading out the door for the last  one, Twenty six consecutive infusions and now Durvalumab will be a thing of the past. What next.😎
    Que Sera Sera
    Bob
  18. Like
    Steff reacted to Charles in Durvalumab   
    Yep, and even after not having a treatment for 2 weeks, then a month the second time, and now this time,6 weeks since any new Imfinzi has entered my body. I do have the best oncologist in the universe working my case though, his name is GOD and the other one, one of the best in the world inasmuch as what to do next about all the adverse reactions and side effects I have experienced while on this treacherous journey that we all walk on Imfinzi. I can hardly imagine that all this started out with a tumor larger than a grapefruit and LITERALLY took up my whole lung, had my right lung partially collapsed  and now is about the area of a WALNUT,  2 1/2 inches x 1.5 inches and the radiologist doesn't use the word LARGE anymore in his description of it in the latest PET/CT, it is now a "masslike conglomeration" I would say this is grounds for a celebration in my household but our work is not yet finished, we have a walnut to eat! Talk at yall later.;...... Charles
  19. Like
    Steff reacted to Charles in Durvalumab   
    Thanks Tom and Steph,
    Also answers questions whether prednisone stops the imfinzi from working, NO it doesn't, even the maximum dosage of prednisone (1mg per kg of body weight per day) and even when on 50 mcg of thyroid hormone replacement pills, and even low PDL-1 (10%) THANK YOU LORD!
  20. Like
    Steff reacted to Charles in Durvalumab   
    #9 gone for me, Pet/ct scan results in=  Shrinkage, SUV less. mediastinal node gone, with small plueral effusion, and small pericardial effusion, no new C ANYWHERE, Hoorah! Great scan!
  21. Like
    Steff reacted to Charles in Durvalumab   
    also a good update here
     
    the prednisone seems to be working it's wonders as the side effects are subsiding pretty nicely. Eye thing all but gone , abilities (physical, mental) seem to be improving, endurance improving, energy level coming back and lasting longer, and the overall feeling of "well being" returning with new creative thoughts emerging, this I thank God for. Last night, as my wife and I were having a discussion, I made a funny remark and we just howled and howled, complete with tears at 2 AM in the morning. I,  full of energy,  being a smoker for 40 yrs plus, and also having COPD, was once again able to laugh uncontrollably, with full breath without a coughing attack, which is something I have not been able to do in over a decade so I realized that, like Tom Galli described it above, This BEAST, and COPD had robbed me of who I was and I became overwhelmingly emotional and my wife and I cried and gave thanks to God and these treatments. I am scheduled for number nine on Tuesday with complete bloodwork and a visit with my Onc but do not know if I will be tapered off the Prednisone enough for the treatment but will be ready for treatment whenever I am, feeling better and soooooo greatful,  thank you all......Charles
  22. Like
    Steff reacted to Jane Lee in Durvalumab   
    Hi Dura recipients
    Just thought I would give an update.  I can hardly believe this.  My lung specialist and the radiation specialist both consider that the tumour in the bottom lobe of the right lung has died from the radiation and chemo.  But the radiation has caused that lobe to collapse so they can't actually see the tumour.  I am assuming that because there is no sign that the tumour has spread or progressed that they think it is dead.  Apparently. they do not do anything about the partially collapsed lung because it is too damaged from the radiation.  Accordingly, the Dura kills any new tumours that might try to form because there is a very high likelihood of re-occurrence.  At this stage, I refused to think about re-occurrence.  What a shock, I read all these things on Dr Google about syringes and tubes to try to extrapolate the air or fluid in the lung to help it re-inflate and they don't do any of that in radiation cases - they just simply leave it alone.  Wow, no oncologist for six weeks and the radiation specialist doesn't want to see me again.  Only have to do the Dura once a fortnight and a blood test once every four weeks.   It feels so surreal.  I feel I am getting a second chance at life so I am staying on my current regime - no alcohol, no cigarettes, keeping processed foods to a minimum and as much walking as possible.  They have even told me I can begin to lose weight (need it especially after putting on so much with the predisone).  I actually wondering whether as a beginner to this lung cancer stuff that I am just being naive??????
    Thank you all for your love, support and encouragement.  It is so lovely to hear from people in the same predicament as yourself.  I must have a look at all of the ASCO abstracts.
    Kind regards
     
    Jane Lee
  23. Like
    Steff got a reaction from Kleo in Durvalumab   
    Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!)
  24. Like
    Steff got a reaction from Tom Galli in Durvalumab   
    Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!)
  25. Like
    Steff got a reaction from Claudia in Mom newly diagnosed with Stage IV NSCLC   
    Well then, knowing your mom's specific treatment plan helps me to share more of my mom's story with you as it will be relevant...
    Pembrolizumab is another name for Keytruda - an immunotherapy.  Standard care for folks without mutations with NSCLC adenocarcinoma often includes chemo + Keytruda.  My mom did not have any mutations, but her PD-L1 expression is in the high 90%'s, so it made her a good fit for Keytruda.  So her treatment plan included 2 kinds of chemo (Carboplatin + Alimta) and Keytruda.  She did 6 sessions of chemo + Keytruda and then went on to Keytruda alone for about 6 months.  I imagine your mom's different chemo cocktail is due to her EGFR gene mutation and an Exon 20 insertion.  
    My mom's lung cancer responded to the treatment with total obliteration.  She has had no evidence of active disease for quite some time and felt immediate relief from the treatment (her cancer was on the back of her trachea and she had to have a stent to keep her trachea open, the stent was removed within a few months of beginning treatment because the tumor had shrunken so much).  Chemo has it's side effects. As I said before, my mom didn't do that great with her 2nd round of chemo.  It was a tough 6 months, but she made it through.  Keytruda has much less severe side effects for most people.  If you want, you can check out my mom's journey through her 1st year of Keytruda.  I talk about the side effects and troubles she had throughout the treatment.  You can find it    here.   I hope it provides you hope, that's my intention.
    I know that you are probably in a dark place right now, I get it.  When I reached out to these forums, I had never been so lost in my life.  These forums and the information from LUNGevity helped me find my way and helped me to advocate for my mom.  If you were to ask my mom what kind of cancer she has, she would tell you lung cancer.  She doesn't know non-small cell or adenocarcinoma.  When you ask what kind of treatment she has had, she will say a lobectomy, chemo, radiation, and Keytruda.  And that's enough information for her.  I love that your mom's only job is to get better. I have the same philosophy.  I'm an only child and my dad has dementia, so I am it when it comes to the "team" of advocates for my mom.  I hope you have more support as it's an exhausting journey.  Arm yourself with knowledge and know that you are going to second guess yourself a lot.  But that's okay.  There's no clear cut path, your mom is forging her own path as a warrior.  
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