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Deb W

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  1. Like
    Deb W reacted to Tom Galli in Newly diagnosed - stage 4 NSCLC   
    JuneK,
    Welcome.
    Judy's advice is just what you need now--to acquire knowledge about this disease. Her suggestion of attending our upcoming survivorship conference is a good one. It is a virtual conference using Zoom technology and it will be a crash course in understanding all things "lung cancer". Here is the link that allows you to register for this free event.
    My diagnosis, like yours, was a surprise. Mine occurred at age 53 and I did exactly what you did--took a deep dive into "Dr. Google" to ascertain survival possibilities. The virtual doctor suggested about 6 months, and I've beaten that by a large margin. In February, I will have survived nineteen years after diagnosis of late stage lung cancer, progressed to Stage IV. So my first suggestion is, if I can live, so can you!
    How does one do that? I believe knowledge is power in this disease so learn everything you can about it in general and most importantly, when you get your biopsy information back, take a deep dive into your particular type and presentation. How does one do that? The survivorship conference is a grand introduction but here (our Lung Cancer 101) is a very good tool you can use today.
    Besides knowledge, survival attitude, I believe, is important. I don't know why. There is not any science to back up my attitude suggestion. But there are human dynamics that support it. If you present yourself as a knowledgable patient, believing the treatments you receive are going to help, and asking relevant questions of your treatment team, they will stretch to do there best for you. Here is a blog I wrote years ago that cites Stephen Jay Gould, PhD, who was diagnosed with a very lethal form of lung cancer but went on to survive 10 years beyond his diagnosis. In the blog, there is a link to the essay Gould wrote about his survival journey that speaks to attitude and listening to that essay now, for you, will be most helpful.
    So we have knowledge and attitude and last but perhaps the most important thing for you to embrace now is hope. And, indeed "hope is a good thing." Here is my message to you about hope.
    We are here for you every step of the way. We can answer questions and offer feedback. Recognize that lung cancer treatment is no longer a medieval experience. New and sophisticated methods that actually produce results are in play for those in treatment today. There is much to be hopeful about.
    Stay the course.
    Tom
     
  2. Like
    Deb W reacted to Lisa Haines in Introduction   
    Hi Kevin
     Your  wife’s Case sounds very familiar to mine. I ended up going to the ER back in March 2015 with a very sudden and severe onset of what I thought was vertigo.  An urgent CT scan was done and the ER doc came in and told me I had a brain tumor, my first thought was that I had glioblastoma because I had lost a cousin to it just one year prior. 
     
    I was transferred to a larger sister hospital and spent the first week in a neurology unit having multiple test done and ultimately learned that I two had stage four non-small cell lung cancer which later turned out to be KRAS positive.  
     
    My first treatment was stereotactic radiation which was very effective and cleared the brain mat which to this day -,thankfully has never returned. I later started on chemotherapy (Carboplatin and Pemetrexed) which was pretty much all we had at the time and did quite well for a few months, but when I was switched to Pemetrexed  to maintenance.  
     
    By the fall I had a very aggressive tumor and we knew I needed another treatment - that is when my oncologist suggested I go on immunotherapy “Opdivo” Which had just recently been FDA approved as a second line treatment without any need for high PDL1 - Back when I was diagnosed they didn’t test for PDL1 so I never knew at the time what mine was so this made the most sense.
    I also had 10 rounds of radiation to my chest chest before I started the Opdivo.
     
    My first scan was in February and we saw a lot of shrinkage and we were very pleased with how well it was working. I continued but ultimately start having side effects and the most concerning was low-grade pneumonitis, this is something that can be a common side effect and also become serious. In my case it didn’t get to that point but by August I had my third bout with it even though it was totally asymptomatic it would show up every time I had a CT scan and there was a lot of inflammation in both lungs.  By this time I was stable so they decided to stop the immunotherapy even though the standard treatment. Is two years. I was on it for nine months and it was a lifesaver for me. It’s now been almost 6 years since that last infusion and I am now NED And have not had any treatment since August 2016. I still see my oncologist on a regular basis, I have port flashes every six weeks, labs every 12 weeks and Scans currently now every six months.
    Until you have the biomarker results you will not know if this may be an option, but if it is I would highly recommend it. Most patients now start with a triplet which is a combination of two chemo meds usually Carboplatin And Pemeytexedvalong with Keytruda which is another immunotherapy drug very much like Opdivo.
    I definitely started out with a very poor and grim prognosis, but so much has changed in those last seven years and I am very thankful to be doing well and hope and expect to be a long-term survivor for many many more years. There is some new studies that seem to indicate when people have this type of response to immunotherapy it actually may in the very near future be considered potentially curative. I hope every day that will be the case!  
     
    Welcome to LUNGevity an amazing support system for all those touched by Lung cancer.
     
    in addition to the form we also have several Facebook groups and I tend to be in those groups more often. There is one specific to support and awareness which is the main group and then there are also groups specific to mutations if and when you find out which mutation she has she may find one of those groups to be very helpful. On top of that we have what is called virtual meet ups with your hosted weekly on zoom and you can sign up for those on the main LUNGevity page.  Fantastic group of survivors and caregivers who come together to chat and  fellow survivors and family members.
    Wishing you both a very best. Welcome to the group that no one wants to join!
    Lisa
     
     
     
     
     
     
  3. Like
    Deb W got a reaction from Scruboak in It's been a while   
    As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
    Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
    Thanks again for all your support...Deb
  4. Like
    Deb W got a reaction from LouT in It's been a while   
    As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
    Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
    Thanks again for all your support...Deb
  5. Like
    Deb W got a reaction from Rower Michelle in It's been a while   
    As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
    Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
    Thanks again for all your support...Deb
  6. Like
    Deb W got a reaction from Tom Galli in It's been a while   
    As always this group provides me with so much information.  I appreciate all of you so much.  The good news I think is that the 1st time I had IMRT, the second time I had SBRT and now this third time will be SBRT.  I had a complete response with both  so I am hoping for the same this time.  Yesterday he told me that there is a tiny area in the mediastinum that came back but it cannot be treated as he waits a full year before using it in the same area.  So that's another cloud that hangs over me . I have to discipline my mind to not think about that while I'm going through this course. 
    Michelle, I had never heard of Proton radiation so I looked into it.  It looks like they have it here at Rush, but it wasn't mentioned as an option so I will check with my radiation oncologist.   and saw that they offer it at Northwestern (that's where I was treated previously). Thanks for the heads up on nausea...I do remember that very well now...usually I love coffee...couldn't stand it along with some other favorite things.  So it all starts next Thursday.  The weather looks good  for the week so I'll be out on my walks and maybe even a little rallying in tennis!  Trying to get it all in because I remember the fatigue hit hard.
    Thanks again for all your support...Deb
  7. Like
    Deb W got a reaction from LouT in A new therapy for NSCLC?   
    Jack,
    May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
    Deb
  8. Like
    Deb W got a reaction from jack14 in A new therapy for NSCLC?   
    Jack,
    May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
    Deb
  9. Like
    Deb W got a reaction from Justin1970 in A new therapy for NSCLC?   
    Jack,
    May I ask what happened with Tabrecta?  There is another targeted therapy Tepotinib for the METex14.
    Deb
  10. Like
    Deb W got a reaction from Rower Michelle in Starting SBRT this week   
    I've been away for a while and just seeing this now, Colleen.  I had SBRT in August for 15 sessions on mediastinum.  It worked!  I did have a burning feeling in my throat which made it difficult to swallow.  It resolved in 2 weeks.  I also had SBRT in January for 5 sessions on my diaphragm - the only side effect was fatigue which has gone away and my follow-up CT last week shows it worked again.  Please let us know about your experience and how you're doing.
    Deb
  11. Like
    Deb W got a reaction from WalkingHorse in Starting SBRT this week   
    I've been away for a while and just seeing this now, Colleen.  I had SBRT in August for 15 sessions on mediastinum.  It worked!  I did have a burning feeling in my throat which made it difficult to swallow.  It resolved in 2 weeks.  I also had SBRT in January for 5 sessions on my diaphragm - the only side effect was fatigue which has gone away and my follow-up CT last week shows it worked again.  Please let us know about your experience and how you're doing.
    Deb
  12. Like
    Deb W got a reaction from Tom Galli in Starting SBRT this week   
    I've been away for a while and just seeing this now, Colleen.  I had SBRT in August for 15 sessions on mediastinum.  It worked!  I did have a burning feeling in my throat which made it difficult to swallow.  It resolved in 2 weeks.  I also had SBRT in January for 5 sessions on my diaphragm - the only side effect was fatigue which has gone away and my follow-up CT last week shows it worked again.  Please let us know about your experience and how you're doing.
    Deb
  13. Like
    Deb W reacted to Karen_L in Starting SBRT this week   
    Howdy, 
    Congrats on getting your team in place! It really does make a difference for me, too. 
    Of course you're scared-- it's a new experience. I'll just chime in with RJN about the undramatic nature of my 30+ IMRT radiology sessions. Out of a whole long list of possible side effects, I had only one: fatigue. SOB was not involved. 
    I'm having gamma knife surgery on my brain met in two weeks. I figure I'll be tired,  but I'll just wait to see if other stuff shows up.
    Meanwhile, my fitness quest continues! I'm training for a hard, 75 mile bicycle ride. My pulmonologist, an avid bicyclist, thinks this is a dandy goal. Everybody else on my medical team finds my goal amusing. I hope you'll enjoy your days ahead despite your fears with stupid cancer. 
    Karen
  14. Like
    Deb W reacted to ColleenRae in Starting SBRT this week   
    Just a check-in. I'm finally taking steps to address this second lung nodule (LUL) we've been watching since my lobectomy in Oct 2018 (RUL).  It's highly suspicious for another adenocarcinoma in-situ. Still smallish, but didn't want to miss a window of opportunity to get it before it spreads or grows.  PET scan did not light up, but consensus is it's the same as my last tumor.  I thought I was mentally ready for this, but I'm not. Finding sleep is not very restful   I was told I could choose another surgery or SBRT.  With COVID, I was concerned about a hospital stay, and I really didn't want to undergo another surgery, so I didn't even go for a surgical consult. SBRT just seems like the right choice to make. (Tom Galli's posts made me feel confident in SBRT!) 
    I'm very grateful for and pleased with the radiation oncologist from Univ of WA Med Center / Seattle Cancer Care Alliance.  My "team" has been outstanding. I can really see the difference in having a "team" in this process (I did not have that with the lobectomy... NOW I get it / why it's so beneficial to have a medical oncologist, etc.!) The RO has taken the time to understand my living situation (being out-of-town, single parent of an adult child with Autism). I feel fortunate I will only need 4 SBRT treatments, and he has scheduled them for Tuesday/Thursdays for two consecutive weeks. This will allow me to stay in Seattle for a couple of nights, drive home for a few days, and then return for the final two treatments. Perfect situation for driving and including the ability to care for my son.  The RO does not anticipate I'll have any major side effects. Possibly fatigue. Maybe a cough and some SOB. I hope that's all. I'm not afraid of the actual radiation. I know it won't hurt while being done.  I think I'm more afraid of side effects / impact on quality of life - should that occur... and, I'm just afraid of cancer, in general.  I have to fight hard not to think "okay, then what comes after this?" I want to believe that SBRT will zap this guy out of the ballpark and I can have a few years of NED if all goes well.  I am not foolish enough to believe that I won't be dealing with lung cancer again in the future.  I am 63. I am sure it will rear its ugly head again, but reading the bravery of others here in this forum is very inspiring and helpful in coping with that fear.
    When I came to this forum over 3 years ago, I was terrified. This "place" and the people who participate, has really been my sole source of support and education (apart from my own research).  Thanks to you all!  When I had my lobectomy, I was very frightened about the future and my son.  We still live together - just bought a house together - and I'm praying I can stay at least as strong as I am to enjoy our home and fix it up with my son. 
    SBRT will be a very different experience from surgery, I'm sure.  This time we are staying at the SCCA house during my treatment. Last time I had to leave my son alone in a hotel while I was in the hospital. At least we can be together this time.  He has been incredibly supportive and loving.
    I am scared and yet - at the same time - I feel like I'm in a bit of denial, like this isn't that big of a deal (the SBRT - not the cancer. I know that's big). All I want to do is have the SBRT get rid of this tumor. I find myself worrying about things like: Will I be able to get up the stairs after SBRT without shortness of breath? Will I be able to garden? Will I be able to go for long hikes/walks up steep hills) with my son?  It's rainy and cold today and I felt mad - afraid that my days of doing these things might be numbered due to cancer or SBRT.  I wanted to get out and walk all day.
    I'll check back after my treatments are completed.  The RO said he is comfortable in waiting 6 months following SBRT for my next scan, or we could do it in 3 months if that would make me feel better. I'll likely go with a 3 month scan.
    Thanks for letting me vent and express my worries here on the keyboard.  It just helps to have a place to get some of these thoughts out!  Best to all of you. Colleen
  15. Like
    Deb W reacted to Rower Michelle in Mom Just Diagnosed with Stage IVa NSCLC Adenocarinoma, Mets to Plueral Lining, Waiting For Treatment Plan   
    Hi Emily,
    I grew up across the river in Jersey, my parents are around the same age as your Mom.  In 2018, I was diagnosed with Stage IVc a comprehensive biomarker test revealed the ALK mutation.  
     
    My mother had a gynecological cancer, initially diagnosed at at stage 1 and five years later the disease progressed directly to stage IV.   I’m not writing this as part of a doom and gloom because I want people to make informed decisions for their parents treatment.   Like me my mother had a mutation and targeted therapy along with immunotherapy, Keytruda was highly recommended.  Keytruda is commonly used for the treatment of lung cancer. 
     
    Diagnosis is not prognosis, and Dr Google is the worst place to obtain information about prognosis.  The treatment plan development really comes down to getting a second opinion once the biomarker testing comes back.  Lung cancer is very specialized and in the City it’s possible to find a Thoracic Oncologist that specializes in specific biomarkers (and they may not be at MSK). 
     
    What I learned from my mother’s experience was the Keytruda was more toxic than the actual cancer itself. Her oncologist was very enthusiastic about the treatment plan.  One of the questions I didn’t ask and really wish I did ask is a hard one- “what happens if we don’t elect any treatment?”  
     
    My mother had fatal side effects from Keytruda just days before her 78th birthday.  If we had elected for no treatment, her quality of life would have been much better and in fact she would have lived longer better because her cancer was slow growing.  Something similar happened to one of my lung cancer support group members with targeted therapy.  Safety and efficacy are not things that doctors talk to adult children about and they need to start doing so.  
     
    Cancer therapies are dosed for a one size fits all without consideration for the elderly. It’s also important to ask your Mom about what her wishes are.  I’m a definite helicopter child and my Mom made it pretty clear she wanted to drive the bus so I stepped in when she asked me to.  Sometimes that was hard however my mother’s oncologist and I had a good relationship.   I had the docs cell phone number and knew I could call at anytime. 
     
    I know all of this comes as quite a shock and there’s so much to absorb.  I know you love your mother and want the best for her. We’re here to support you through this roller coaster.  Take it one day at a time.  It’s possible to live with stage IV lung cancer for years and finding the right treatment team, which includes a palliative care physician for the management of side effects from day one  is the best course of action.   Palliative care is often confused with hospice-  having a doctor to manage side effects is a game changer.  The oncologists job is pretty much developing the treatment plan and they don’t know much about how to manage side effects which I found surprising.  You will also want to track down the lung cancer social worker (another closely guarded secret you must ask for) to find out what services your Mom can benefit from.  It’s hard to DIY resources and the social workers can really be helpful.  
     
    Michelle
  16. Like
    Deb W reacted to Rower Michelle in Just diagnosed and absolutely devastated   
    Hi Lily,
    I’m sorry you find yourself here in the club no one ever wants to join.  Like you, I was 51 old-never smoker when I was diagnosed with Stage IV ALK Positive.  The likelihood that you have a mutation is very high particularly since you are under 50.  We all know biomarker testing in the early stages saves lives. Particularly since “mutant cancers” have a high recurrence rate.  I share this not to upset you but to provide you with the best information to advocate for yourself within your national health system.  Informed patients live longer.  

    Initially when we hear the words lung cancer everyone is terrified because we’ve been trained to think this is a death sentence when in reality there are many of us living for years due to the many treatment advances. 
     
    Like you I suspect the cancer went undetected for years by my doctors.  That was almost four years ago and today I remain no evidence of disease.  
     
    Let the tears come and it’s okay to be a mess, brighter days are coming and we’ll help out as best we can along the way. 
     
    Michelle
  17. Like
    Deb W reacted to Tom Galli in PET Scan Positive   
    Marie,
    Welcome here!
    I apologize up front that we’ve suffered a major Internet outage as a result of last night’s storm. So I am confined to writing on a small phone screen with “big thumbs”. Normally I link sources of information on LUNGevity’s knowledge base—Lung Cancer 101. Do check out this resource at LUNGevity.org, particularly content on PET scans and biopsy. 
    I’m an 18-year survivor of progressed Stage IV NSCLC, squamous cell. My life after treatment, including the loss of my right lung has been rewarding and fulfilling. My treatment was not a walk in the park, but I can still actually walk in the park. There is life after lung cancer. Check out my Stay The Course blogs for highlights of my life during and after treatment. If you really want details, you can read my book Scanziety in the Kindle Store on Amazon. 
    My bottom line up front is if I can live, so can you. I was diagnosed in the dark ages of treatment. There were only 2 drugs to “treat” my lung cancer, Taxol and Carboplatin. In reality, they did a lousy job attacking solid tumors and that is why I had 18 infusions of the stuff. I had side effects during treatment and still experience side effects but I can “walk in the park”
    Read my blog “Comprehending The PET” for insight on SUV uptake. Yes, inflammation by any means may generate a SUV (a fungal infection, for example) but at a certain level, say greater than 6, metastatic disease is presumed. 
    Your pulmonary function test (PFT) will help determine if you qualify for surgery as a treatment. While your CT and PET scans are suspicious, your biopsy should be conclusive. If your tumor is confined to the upper lobe of your left lung, a lobectomy surgery should solve the problem (look up Surgery in Lung Cancer 101 to understand a lobectomy). You’ll likely be offered adjuvant chemo after surgery and I’d take it. Anything you can do to make your treatment “one and done” is best practice!
    I have about 30% total pulmonary capacity. Our last transatlantic cruise before COVID had a back end tour of England and Scotland. With that capacity limitation, I was able to climb thousands of stairs to walk the grounds of the Edinburgh Castle. It took me a while but I made it and I was 70 when I made the climb. At 58 and missing a single lobe of your lung, you could climb those stairs easily. So after treatment, go to Edinburgh and see the castle. 
    If your biopsy confirms lung cancer and if you decide on treatment, you will be granted extra life. How much is not the operative question! What you do with it is. 
    If you have lung cancer, we’ll help you every step of the way through this disease. We understand what you face. We know about uncertainty. We also know there is life after lung cancer. 
    Stay the course. 
    Tom
     
  18. Like
    Deb W reacted to Lisa Haines in Still processing PET scan and biopsy   
    Lizzy
     I wanted to wish you the very best and try to offer some inspiration!.
    I was diagnosed almost 7 years ago (this month) with Stage IV NSCLC Lung Cancer that had spread to my brain.  I never had any warning or symptoms of Lung Cancer ,so it was a huge shock. It was the brain tumor and edema that caused me to see my PCP and have an urgent head CT Scan.
    Today thanks to ALL my treatments (Stereotactic Radiation for the brain tumor), the Chemo, following by Radiation to my chest and lastly Immunotherapy.   I am now Stable/NED and doing well.  I have been off ALL treatments for over 5 years and continue to remain stable.
    I did take Keppra for about six month while in treament for my brain tumor and it was very effective in keeping me seizure free. I was also on Dexamethasone (steroids for several months to keep the brain edema down and also help with chemo side effects.  It too, worked well.    I also have severe claustrophobia so the treament was a uge challenge for me, but I got through it.  ❤️ I am happy to know you opted for a Port and always recommend them to folks who are having infusions.  I still have mine and love using is for labs and contrast for my scans.  I go in every 6 weeks for flushes!   
    I was the same age as you at diagnosed and am very thankful and blessed to be a long term survivor and HOPE the very same for you.  I never ever could have imagined I would be where I am today at that time -- and I'm so grateful to my team for finding the best possible treatments for me.
    Take care and be well.  I wish you the VERY best!
        ~ Lisa
    PS:  When I was diagnosed I did not have any grandchildren - something I had always dreamed of.  Thankfully I have now been blessed with 3 beautiful grand-daughters and they have become my "littlest inspirations" and were a huge milestone in my life.  They are pure JOY and LOVE!   
  19. Like
    Deb W got a reaction from Roz in LexieCat/Teri Updates   
    Dear Steph,
    I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
    Warmly,
    Deb
  20. Like
    Deb W got a reaction from Susanrae in LexieCat/Teri Updates   
    Dear Steph,
    I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
    Warmly,
    Deb
  21. Like
    Deb W got a reaction from jack14 in Trabecta Side Effects   
    Sib,
    I was told by my oncologist that Tabrecta has an added protective benefit for the brain when compared to Tepotinib.
  22. Like
    Deb W got a reaction from Tom Galli in LexieCat/Teri Updates   
    Dear Steph,
    I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
    Warmly,
    Deb
  23. Like
    Deb W got a reaction from LouT in LexieCat/Teri Updates   
    Dear Steph,
    I've been away and I am very sorry to learn this news. Your mom has helped so many of us on this forum. She's a brave woman and knows herself well.  Her decision for comfort and peace are understandable.  Please know you and your family are in my thoughts.
    Warmly,
    Deb
  24. Thanks
    Deb W reacted to Tom Galli in Some Thoughts on Medicine   
    Cancer patients get a unique appreciation and understanding of the medical profession by the very nature of our disease. At the minimum, we interact with our GP, Oncologist or Radiologist, and a brace of medical testing and treatment nurses and technicians. This experience base gives us a lot of insight into the profession. Here is a synthesis of the insight I've accumulated over the years.
    Never go to a diagnostic "results revealed" medical consultation alone.
    If you don't understand the words the doctor uses, ask them to re-explain without the "medical/techno-speak."
    Tell the doctor your special circumstances or medical needs before hospitalization or infusion treatment. Ask these be captured in the admitting orders. Ask to see the admitting orders at admission or before first procedures. Don't get admitted if the order does not cover your special circumstance.
    Most procedures can be painless or discomfort can be minimized but you need to ask for relief before the procedure. For example, ask for a lidocaine injection before IV insertion or for Xanax to reduce anxiety during scans. These are examples of special circumstances that should be discussed with the ordering doctor at the time he orders the procedure. Don't be afraid to complain. Be kind at first but if the situation is not resolved to your satisfaction, add anger. Remember, you are paying for all this and you are a customer as well as a patient.
    People in the medical profession are like people in any profession. Some are good and some are not so good. The difference is medical professionals have unique authority and special powers that say a consulting engineer or a lawyer will not have. To get prospective on a new medical professional, pay attention to how he or she interacts with the office or clinical staff. They won't treat you any better than the people they work with every day.
    The best doctors treat people, not patients. Try and find ways to remind them you are a person. Tell them you are afraid or uncertain, for example, to help them recall they are dealing with a human being. I always find a way to ask if they pray before a procedure.
    Most medical professionals, unless also cancer survivors, won't have any idea how or what you are feeling. Tell them before, during and after a procedure.
     
     
     
     
     
     
     
     
     
     
     
  25. Like
    Deb W reacted to Rower Michelle in 3 months later   
    Hi Chuck,
    Greetings fellow ALK brother!  My CPK levels took a while to even out as well.  I do have long term muscle aches and random joint pain.  As for the water, be cautious not to drink too much as it will decrease your sodium levels and potentially potassium levels which causes- drum roll- muscle aches!  It’s a balancing act the first year on Alectinib.  I drink two 33 Oz smart waters a day, some herbal tea, and at night a glass of lemon water with organic Apple cider vinegar.  
     
    I also take a large prescription potassium supplement as well as a calcium supplement called Bone Maximizer.  Those two things recommended by my Integrative Physician helped.  
     
    Most of us have at least one dose reduction, since these meds are prescribed at maximum levels sometimes they need adjustments without losing efficacy.  
     
    I do light weights, lots of walking and more recently enrolled in the LiveStrong program at the YMCA.  Alectinib is brutal on fatigue so exercise is very important.  Until you get medical clearance to start again check out the Tai Chi videos on YouTube.  
     
    Good luck on the scans!  I just had mine, NED 40 months on therapy.  
     
    Michelle
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