› Forums › General Melanoma Community › Stressed during Quarantined?
- This topic has 12 replies, 8 voices, and was last updated 3 years, 9 months ago by
Margokat.
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- August 14, 2020 at 4:16 pm
Stage IIIA Melanoma diagnosed last year. Almost done with Opdivo – ONLY 2 MORE TREATMENTS! I’ve been quarantining since the pandemic started in early March and I’m going bananas. I don’t leave my house except to go to the doctors and get infusions. I stopped going for hikes in a nearby park because the other people there don’t social distance or wear masks. I’m super-terrified of getting Covid-19. I’ve been told by my doctors that I’m in grave danger if I get it, and my family lives far away and if something happens I cannot travel to them. I’m starting to get very down in the dumps and very irritated with my spouse. Anyone else in the same boat? How are you coping? Any advice you can give?
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- August 14, 2020 at 9:15 pm
I feel you. 3c. I have 4 more months of opvido.My question to my onc or others: What is time frame after last infusion that opvido would not longer be a contributor to a covid related cytokine storm The disease is NED now, but i have been told i am still high risk because Opvido enhances Covid immno-system over response. I never got a satisfactory answer.
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- August 14, 2020 at 10:16 pm
We are in the same boat! I feel for you both.. Husband has stage 3c as well , diagnosed in May during this nasty pandemic. has had just two treatments of nivolumab but today added ipilmunab as he found more melanoma on orginal site.. I also need to go back to work in a school where i work with 3 and 4 year old preschoolers… I am worried about bringing something home to him, but i need to work for my insurance….I’m looking for answers as well… wish this whole pandemic was over!!!! this is added stress we do not need! -
- August 15, 2020 at 11:01 am
unfortunately my onc is not very experienced with melanoma. i am not sure he is that savy on immo-therapy. so when quizzed he gave me a pretty inconclusive opinion about covid and immo. i asked over at AIM , and got inconclusive response there too. . Basically i don’t think anyone knows about immo and Covid nor how long effects last after treatment ends.this is my understanding. Nivo enhances your immo system response and Covid does so to. Illness from Covid symptoms are actually the immo system over-reaction. are the additive? I have not found the answer to that.
https://www.aimatmelanoma.org/living-with-melanoma/talk-with-a-melanoma-expert/
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- August 15, 2020 at 2:21 pm
Hi there, OP here. I was told by my Oncologist that Opdivo is in your system for several months after an infusion, which is why he wants a CT and follow up with me in 3 months after I finish to see if it’s still working. Hope this helps. Sorry your doctor isn’t knowledgable with Melanoma. I had a health scare two weeks after I first started treatment and had to go to the ER—horrible headache and nausea. The ER was in the same health system as my Oncologist is, and even though it was in my file that I was getting treatment for Opdivo, the ER doctor was completely clueless and chalked my symptoms to stress and “nerves.” They did a CT scan even thought I told them I had one 2 weeks prior that came back clear and they gave me morphine for my headache! 2 days later I followed up with my Oncologist and Primary Care and it turned out I got the flu!
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- August 15, 2020 at 3:09 am
Ugh. I. Sick of all this. Luckily I have three children who need constant conversation, entertainment, stimulation, clean towels, food three! Times a day. DH is terribly busy with school and his doctorate. It’s aLot. We’ve been social distanced for almost six months. I find it helpful to leave the house even if I stay in my car and assume everyone is a toxic zombie. -
- August 15, 2020 at 3:40 pm
Good to hear that you have just two more treatments left to go! Sorry to hear you’re feeling cooped up.I’m not sure where you live or in what state. I think that in areas of CA, TX, FL, GA, you need to be really careful. Also, in and around any urban areas you need to be careful, and even in the suburbs, where local parks can be crowded. If you’re in a space that’s well-ventilated and not crowded you should be fine. Maybe your local park is less crowded at a different time of day? Are you able to take walks around your block? Or sit outdoors? Even that’s better than nothing
When Covid starting rearing its head in my county I was afraid to go out anywhere and I live in a rural area of PA. But I did take drives just to get out of the house and felt better for it.
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- August 17, 2020 at 4:18 pm
Hi there, OP here. I actually live in Virginia, just south of Washington, DC. In DC and all the DC suburbs, the rates are high, however, my county/area’s numbers are somewhat low compared to the rest of the DC Metro area. I’m glad because our Governor used to be a physician, so he is taking it VERY seriously, but even though our area has relatively low rates compared to the rest of the metro area, people still don’t seem to take it seriously. My husband went to go pick up dinner one night and some of the restaurants HAD PEOPLE EATING IN THE RESTAURANT! WTH? We feel like it’s a matter of time that things will be shut down again, especially in the fall.Another frustration is my family and my parents who live an hour away. I haven’t seen them in MONTHS, and they do not seem to be taking this seriously at all. They still go to the store every day, go out to eat in restaurants, and even went to the beach out of state, as if there is nothing going on. Oh, and did I mention they are BOTH HIGH RISK?! They have invited me over for barbecues and gatherings, but I have to explain to them ad nauseum that I cannot come over to their house because I’m so high-risk AND, they happen to live in one of the DC Areas that is still considered a “hot spot,” so I wouldn’t be able to drive to their area anyways! I keep asking them to take things seriously and remind them that if something DOES happen and one or both of them gets sick, I cannot come and help. One of my friend’s parents recently died of Covid — and it was sudden! 3 days after getting infected with the virus they passed away, and my dear friend couldn’t travel to see them to say goodbye because they are high risk. My poor friend is just devastated, and I’ve asked my parents to please take this seriously, but they are stubborn and set in their ways and just think nothing will happen to them. And in the meantime I’m stuck at home trying to work and keep myself from going insane!
Anyways, thanks for listening to me!
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- August 18, 2020 at 1:33 am
Dear Anonymous,While I agree with many of your concerns, I just wanted to correct you on the situation in DC – in NorthWest DC the situation is pretty good: there are not so many cases (compared to April) and mask-wearing is common. When I walked around the Cathedral this evening I think almost 100 percent, and those not wearing masks usually have one and/or will just move far away from you. On Sunday we walked in Riverbend Park north of Great Falls and again almost everyone was wearing a mask and the park was not the crowded. Similarly along the canal on the Maryland side. PG County may have more cases.
My understanding though is that outdoor transmission is pretty low, so I think walking in parks wearing masks, keeping distance, should be pretty safe. I try to go out for a walk most days and if not then at least to sit and read by the Cathedral.
Concerning restaurants though, I completely agree. I have been to a couple of cafes for drinks with friends but we keep a distance, have a sense that they are not meeting too many people, and sit outside only. I believe that sitting inside is risky and not responsible. In that sense, like you, I dont understand your parents’ approach and you must find this quite dispiriting. I volunteer teach and my student’s father died from covid so this is real, My mum is back in the UK and its sad I cannot see her; when I do go back i will have to isolate for 2 weeks before seeing her. My mum though, unlike your parents, really is taking precautions.
My advice would be to go out for walks most days, and pace yourself since I think this could last another year or so. So we have to kind of be strong to get through this. I find the lack of social interaction very difficult, even though I am not normally the most social. I am starting to ask out people from work to meet for drinks every few weeks, again outside only and at a distanace and people who i trust to take this seriously. If you have not read P G Wodehouse (Jeeves) then it could be a good time to try, its really funny. It might be on Amazon Prime too so I strongly recommend. Also other british comedies there or on Britbox. Winter could be difficult, as it will be harder to meet people outside, and cases then could be more, so I would go outside a little more now so that we can make it through the winter.
I am finding this a nightmare too, especially as I miss some close friends who I cannot see, but we just need to be strong and when this is all over then we will have a great time and be even more grateful for life
Good luck and hope your treatment goes well
Mark -
- August 18, 2020 at 3:34 pm
That is great to hear, Mark. My husband was in DC a week ago and remarked how people actually seem to be taking it seriously around there. Pretty much everyone he saw was wearing a mask. However where we live, which is about 25 miles away, you would never know there was a pandemic, aside from a bunch of shops and businesses that are boarded up. You are in a great location in DC, I love the Cathedral. My husband did mention that the arboretum seemed to be open and didn’t have a lot of people, so we may go check it out this weekend. Thanks!
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- August 16, 2020 at 8:33 pm
I completely related to your post and to Judi’s response! Yes, I feel the stress and I don’t have the added stress of having a cancer diagnosis and currently going through treatment (I’m the spouse) and our family is barely getting along in month 6 of semi-quarantining. We just weren’t built for this amount of “family” time! Certain couples (myself included) don’t do great with this amount of time together either. It’s rough. I just can’t imagine the added stress of worrying about COVID-19 on top of Opdivo treatment. Many hugs to you. Do whatever you can to mitigate the stress while staying safe from exposure. Maybe treat yourself to something online, order a movie you want to watch or order some cool food you wouldn’t normally splurge on and delivered contactless to your doorstep (so far they really don’t think food is transmitting covid). Maybe figure out how to workout at home if you can. The workouts definitely help the stress even if you don’t feel comfortable going to park. Keep posting on here too, it will help hearing from others. It also helps me to think relatively. I think about the pioneers and farmers in the 1800s who spent decades possibly on a farm or in a wagon going across the US. I also reread Grapes of Wrath 😉 This will end for us and social will resume eventually once we have vaccine or some sort of treatment to mitigate disease. We did play virtual trivia last night with people from around the country, that was fun. -
- August 17, 2020 at 12:26 pm
Stage 4 here. Found in January but seemed to have been popping up since July 2019 and missed. Anyway, I’ve been going to work every day and still go out to stores etc when I need to. Currently on Opdivo monthly and taking Taf/Mek as well and did about a month of radiation to brain, lung and spleen back in March/April. Not sure what people are supposed to be doing on Immunotherapy my doctor just told me to be careful as I could be considered immunocompromised. I spoke to Dr. Wolchok a couple months ago and asked what else I should be doing and he said to keep doing what I was doing. Keep up the daily routine of going to work and living life.
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