How are you doing?

[Denzie]

This board has been pretty quiet. Has anyone had an update? Are you still being treated? Having trouble getting cancer or other meds?

Please know you are all in my heart and my prayers daily.

[NRd19]

Hi to you , hope you are well and keeping safe , my dad was on immune therapy and has been on it for just under 12 months last 2 scans have seen his lung cancer shrink so that’s fab but he was due for treatment last week and due to covid 19 it has been stopped until , well who knows when, we as a family are so worried he’s taken to treatment fabulously and looks extremely well ,so to have it stopped and risk it spreading after all the hard work of the hospital and my dad for being strong is heartbreaking I understand the risks of him catching the virus and this could take his life but I thought maybe it could have been done safely maybe at home & doesn’t immune therapy help increase my dads own immune system, I know a lot of people will be in the same boat and I’m wishing everyone love and please keep safe ❤️

[Denzie Moderator Volunteer in reply to NRd19]

My experience after treatment was that my overall health was an indicator of how I was doing. My breathing was easier, the clubbing in my fingers was gone, my cough was easing, my coloring improved. You say he’s taken to treatment fabulously and I send hope that means he’s responding in the same positive manner that I did.

The way immunotherapy works is on a specific and narrow range. The cancer cells emit a protein that tells the bodies T cells there is nothing wrong with them and they don’t need to be destroyed. The immunotherapy works by teaching the T cells to look past that protein to destroy the cancer cells. (This was an over simplification of how it works, it’s quite complex.).

We’re staying healthy here despite the fact that Michigan has the 3rd highest rate in the country. We’ve been able to get pretty much everything we need. Two of my housemates use c-pap machines so when there’s a rumor of distilled water we’re on it.

We’ve two dogs that keep us walking so that’s good.

If you want more information about how long you’re going to be able to suspend treatments call the help line at Go2 Foundation or their regular answer lines. HelpLine 1-800-298-2436

General Questions 202-463-2080 and 650-598-2857

[NRd19 in reply to Denzie]

Thank you so glad your doing well , hoping that because dad still is feeling good things are all going in the right direction , take care keep safe ❤️

[ThePurplePlace]

Hi Denzie,

I am one of the "lucky ones" who is currently Stable and "Off treatment", but I have had some changes in routine care and the hardest part is not being able to be with my family.

My cancer care has not changed drastically and I do feel blessed that I'm not going through treatment at this time. But, I do have some concerns about the rountine things have all changed, for example my Port Flushes. I normally have my Power Port flushed every 4 weeks, however they have now been moved out to 8 weeks, which I understand, but it's also a bit alarming, when you've always had it done every 4 to double the time, especially when I have a history of a PE? We've also been told, it's possible they may try to extend to 12 weeks, but I am hoping that will not be the case. As of now I'm schedule for May 6th.

I am also due for a routine 6 month CT scan and follow up with my Oncologist in May but have been told, that too will also likely delayed.

And, I'm currently scheduled for Hip Replacement surgery, in mid May, but that too will now be pushed out as they are not doing any "elective" surgeries at this time. They did my phone preop last week and said my "hospital" preop for 4/28 is expected to be cancelled soon, but everything is still up in the air. They stopped elective surgery in early March, so all those folks are now ahead of me too...and to be honest, I don't think I would want to have surgery in hospital with Covid patients just a month away? But I do want to done as the pain is bad and walking is a challenge too. There are no easy answers, that's sure sure!

Other than that, I'm okay and staying home, but my Husband does have to work "essential employee" and it's kind of nerve wracking trying to make sure we doing everything we can not to have him bring the virus home. He's also doing our shopping and getting my RX's, as needed, but it is quite a daunting task to try to disinfect him and everything that comes into our home.

The most difficult thing for me is not being with my grand babies and my children. I was just about to go on a bucket list trip to Vegas (celebrating my 5th Cancerversary) where I was to meet up with my son and his Fiancé then onto to San Diego, so stay with them for another week). We only get to see each other 2-3 times a year because we live on opposite coasts, so I really miss them and we were ALL super excited about the trip. We had to cancel at the very list minute (just days before Vegas literally closed down) and thankfully we did otherwise I would have been trapped in Cali, when they started their Shelter in Place and still would have had to get on a plane for a six hour flight home. Phew! We do HOPE we can go in the Fall, but I'm wondering when it will be "safe" to do something like that again? No one knows?

My grand-babies and my younger son are here locally, but I miss them terribly too. We do Skype but my little 3 year old, just cant' quite understand why 'Nanni' is not coming over and why she can't come here. We typically have her all day on Saturday and two afternoons a week, along with her 9 month old sister. They are always the best and happiest part of my life and I absolutely LOVE and adore them both so much.

Living with Stage IV cancer I learned a long time ago how important it is to LIVE each day to it 's fullest and being with my family is so important. I have accepted my illness and I know that I most likely will not have many, many years with them, that's why I cherish every day we have and have build such a beautiful and loving bond with them. No matter what happens to me, I want and hope they will always remember me and know just how much I LOVE and adore them both. Plus, now that I am stable, I do want to do everything while I can, another reason I want my hip surgery, so I can walk with them and do even more while I'm able. I just HOPE and PRAY I can get back to being with them soon. This part is truly breaking my heart and it gets harder and more depressing every day! They are my little LOVES and have been such a huge inspiration and JOY to me! Covid has taken that away too and it's very painful.....!!

I am however thankful that so far, we are ALL okay and also HOPE and PRAY none of us will get this horrific virus. I worry about my Husband and both my sons as they are ALL essential workers. It's truly a time of uncertainty -- kinds of feels like we are living in a nightmare....

Hoping the very best for everyone and praying that MORE people will start taking this much more seriously, so that we well all great through it.

Thinking of you all and also hoping we have brighter days ahead and that everyone gets through the difficult time!

Lisa

[Denzie Moderator Volunteer in reply to ThePurplePlace]

Oh! Lisa! I know how tough it is to miss family. I’m grateful we have these means to reach out and talk by Skype and messenger and zoom or whatever.

If it helps, twice in the past 9 years I’ve forgotten to schedule port flushes and went 3 months between. I had no problems.

Sorry to read about your hip issue. And the loss of your travel plans. I hate that things are so screwed up right now. The general population is not going to let the government forget about this again. We’ve learned many hard lessons. I send hope that you are able to get your hip fixed in time to visit your son in the fall.

Please let us know what happens when you do get your 6 month CT.

Best hopes,

Denise

[ThePurplePlace in reply to Denzie]

Thank you Denzie.

[Feelingblessed2013]

I am lucky, I am on "watch status" but my Ct has been pushed out from April to June.

My yearly check up with my PCP has been postponed (hopefully next month), I need to see my orthopedic surgeon because 11 months post hip replacement surgery and the pain and burning have gotten worse, but his office is right behind our local hospital, and I am a bit hesitant about going anywhere near the hospital.

So I think basically, I am better of than a lot of people. So I say a prayer for everyone, and count my blessings.

I hope you are doing well.

[Denzie Moderator Volunteer in reply to Feelingblessed2013]

Thanks Katherine. I’m doing much better than so many people I read about. I went back to annual CTs after my January scan so I’m clear till next January. The only medical issue I’ve had is getting a hearing test done so I can get hearing aids. Oh, and a colonoscopy but I’m not sorry about postponing that.

Sending hope that you and yours remain healthy!

[PegD]

It's been a long while since my last update. I found out last week that the clinical trial I've been hoping for is a go! I'll go in this Thursday for a full day of testing - MRI, bone scan, ECG, blood work...the works. If all goes as planned, I start the study 4/22 with once per week infusions. Not a great time in history to be starting a new treatment but after almost 4 years and 5 lines, I'll take it. My last treatment was 7 January with surgery, intestinal infection, ER visit as well as the unknown we are all living with, in between. The cancer center is taking the utmost in precautions against the virus and I am grateful to fill the 8th out of 9 spots for this cohort. The hardest part is that there are no visitors allowed and my husband has been to every treatment, appointment, ER visit, etc. since this dream started. I will miss him being by my side but anxious to get the ball rolling.

I am wishing everyone the very best during this trying time.

(Special hugs to my friend Denzie

Stay well!

[Denzie Moderator Volunteer]

Peg! So glad to know you have this option. Would it be okay to ask if you could PM the study number?

Trying to remember what you wrote last in The Insightful Breath. Is this a phase 1/2 trial?

Know that I will be thinking good thoughts, prayers and strong healing mojo your way on Thursday. We never did take a selfie and I hope to correct that one day.

Best hopes!

[Ssbastos]

Hello Denzie, so far I’ve been sort of lucky. All the Mets I had, melted away with radiation and chemo treatment, and I only have the primary tumor to worry about now. But that’s so small now, that hopefully it’s also slowly dying of radiation too.

I’m still taking Tagrisso (an EGFR tki) to hopefully kill off whatever cancer is left in my system.

Good luck and stay well,

[Denzie Moderator Volunteer in reply to Ssbastos]

That’s a wonderful report and a welcome one. Sending hope that the radiation truly is melting it still. I know that my primary mass was shrinking and consolidating as scar tissue (probably) 9 months after treatment ended.

How long since your radiation ended?

[Ssbastos in reply to Denzie]

My last radiation treatment was on the 26th of December...

[Jenniferroseolson]

Hi everyone. I’ve had a rough ride the past 6 weeks. I am currently on Immunotherapy for stage IV NSCLC...my second-line systemic treatment Nearing my 5 year anniversary in 9 days. Starting in the fall, I had several treatments of Opdivo plus Yervoy and then transitioned to Opdivo only. About a week after my March Opdivo treatment, I had severe Debilitating shortness of breath and cough. When I called on a Friday describing my symptoms, my primary care doctor wanted me tested for COVID-19 (and flu etc), which occurred that afternoon. The physician and I decided NOT to admit me to the hospital given that I would need to be admitted to the “COVID rule out floor” of the hospital (not somewhere I wanted to be if we could avoid that). I went home with an order for home oxygen and strict instructions about when I should call and come for hospital admission if I didn’t improve. When my oncologist returned my call that evening, he started me immediately on prednisone, believing I was experiencing a radiation pneumonitis or pneumonia or a reaction to the immunotherapy. (I had SPRT in November to lung lesions). As many of you know, steroids “turn off” the immunotherapy, essentially, and at that time the word “on the street” was that they were not helpful for COVID-19 and sometimes exacerbate it. Testing at that time was taking anywhere from 4 hours to 4 days, so the WAITING was awful. Gratefully, having supplemental oxygen helped me feel better. My COVID-19 test came back Negative on the Sunday 48 hours post-test and doctor appointment. I continued to improve on the prednisone. The soonest we could get a CT scan, though, was on the Wednesday (one week after symptoms began) due to delay in getting insurance approval. The scan showed NO additional pneumonitis and no indication why I would have had such severe cough and shortness of breath. My oncologist believes that having 5 days of steroid on board could have knocked down whatever caused it and thus nothing new showed on the scan. Or, it could have been immune response, or less likely a pulmonary embolism. Hindsight is 20/20, but had I agreed to be hospitalized, I would have had that CT scan sooner and had more information.

I continue to taper off the prednisone so that I can receive Opdivo again April 29. (That will be a 7 week cycle instead of 4, which is of course nerve-wracking to me, but it’s the best we can do.). I have also been able to discontinue supplemental oxygen. I feel very well, and my lung function is good and normal.

My family has been practicing extreme social/physical distancing since March17. My oncologist reminded me that I live with what I called the Trifecta Threats of high-risk as do all/most of you: a prior cancer diagnosis, on active treatment for cancer, and a lung condition. My husband is fortunate to have a job where he and his colleagues are working entirely from home. We have utilized Instacart and Shipt to have large infrequent grocery deliveries (and then exhaust myself wiping everything down that can’t live in quarantine in the garage to make sure I’m not bringing any germs into the house). I also have three teenagers ( a high school senior..so sad for him right now.., high school freshman, and 7th grader). The “young healthy” people are among the many who are the greatest danger to higher risk people like us since they are so typically asymptomatic. Being trapped here has been very challenging for them, but they are great kids and are adapting well and utilizing screens/devices to enjoy friendships despite the distancing. I am challenged by remaining distanced from my mother and my parents-in-law. We use FaceTime and Google Duo, but of course this is difficult on everyone.

I have had Telehealth visits with oncologist and my amazing psychologist, both which have gone very well.

I am so grateful to have so many resources to get through this and worry and pray about the poor and more vulnerable. I am so grateful to the essential workers who make it possible for my family to stay home entirely. I am so grateful to my sister who is an Emergency Department Nurse and nurse supervisor and all her colleagues.

This time is very stressful, but I am focusing on the blessings that I am finding in it as well. There are many of those during this Pause in our lives.

Wishing all of you the very best health and hope.

Jennifer

[Denzie Moderator Volunteer in reply to Jenniferroseolson]

Wow! Just, wow! You’ve been through quite a bit lately. So grateful that it wasn’t covid. Pneumonitis is tough enough, I’ve had to deal with it a couple times. It only enhanced my love hate relationship with steroids.

Are you doing anything special to help your kids keep occupied? Are there any websites that have activities you like for them?