I'm new here and wish I wasn't here at all...but I am and now I don't know what to do. Here's the background. Any insight would be most helpful.
Couldn't breathe and went straight to ER. A 4.7x3.5x3.o cm tumor had "flopped" onto my airway and caused the collapse lung. Bronchoscopy that night and removal of the tumor. Not in any lymph nodes which my understanding was a gift from GOD. The other gift was a diagnoses of 1C stage and possible rounds of chemo to catch any "missed cells". Monday meet with oncologist to see if chemo is recommended. My thoracic surgeon said DO IT.
No family who can help nor many "friends" there either. So going it alone. Hence signing up so I can talk with someone about this. Any encouragement or advise would be most helpful. All I do is worry and cry. Lost 20 pds and don't sleep much any more. Trying to keep positive.
Thanks!
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Missy2360
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Welcome to the Lung Cancer Support boards. You will find many caring people here who will share what they have done to make this easier for you to navigate. There is so much to share with you so I'll start with some of the basics. First though it is always important to remember that this is not an automatic death sentence.
Pieces of the tumor would have been sent for biomarker testing. That will tell them which gene reproduced wrong and allowed the cancer to grow. Some cancers can be treated with daily pills. Others require chemotherapy and/or radiation, and others may be treated with immunotherapy (IO) infusions or a combination of chemo and immunotherapy.
If they haven't already done a PET scan and brain MRI they should do them. If not get a second opinion. Cancer can move through the lymphatic system and your circulatory system. When a cancerous nodule reaches 3 cm it establishes its own blood source and can shed cells into the blood. Thats why PET scans and MRIs are so important.
The Go2 Lung Cancer Foundation has a book that explains lung cancer and treatments in plain English. You can download it here or request a hard copy be sent to you.
I'm a 10.5 year survivor of stage 4 lung cancer. You will meet others here who have shared their experiences and are glad to let you know what helped them. If you need to talk to another survivor live, the Go2 Foundation will connect you with a phone buddy:
Thanks you Denzie. First congratulations on 10 years. This is encouraging. They did do a pet scan after the bronchoscopy and they removed the tumor during that bronchoscopy . Is was only in the area of the tumor. None in lymph nodes. They were very surprised because of the size of the tumor. Hence the 1B or 1C ? Staging. They also did a resection to try and make sure none was left. At least this is my understanding. I don’t know anything about the bio markers yet. I have some questions written down but the more I research the more I want to crawl back to bed and pull the covers over my head. They also have done MRI, Ct Scan. This is complicated and I’m educated. I did download and read and this to was helpful but lead to so many more questions. Monday is first meeting with oncologist. I think having people to talk to who have and are dealing with this and can give some insight is better than listen to the medical world throw all these great big scary words and ideas at you. I just sit there and nod my head and remember the let phrases and then go try and look up. Sorry for long response as well. Thank you again. I’ll post More news on Monday.
At your appointment ask the doctor those questions you have. Write them down so you don't forget. If you don't understand the doctor ask him/her to restate in plain English. Doctors set aside longer time blocks for new patients and bill the insurance company for the extra time so don't worry that you are holding them up.
If you can't bring someone with you because of covid safety measures ask if you can FaceTime them into the meeting to take notes.
I was diagnosed as stage 1B, 7+ years ago. I had my upper right lobe removed and at that time they did genetic testing. The genetic results came back and indicated that if I only had surgery I had about a 33% mortality in 5 years. Prior to receiving the genetic results I did some research on if I should do chemo or not. The most informative statement I found was from someone who was also stage 1B and decided to not to have chemo, unfortunately, their cancer came back and then were then stage 4. I spoke to my oncologist about it and he comment to me was that I would never be stage 1B if the cancer came back. I decided to do chemo and give myself the best chance I could of having a future, since I was 53 years old. It is personal decision that everyone needs to make for themselves, but if it had to make the decision again today, I would have made the exact same decision..
Thank you Steph 60. This is exactly what I needed to hear. My surgeon point blank looked at me and said I received a gift and if I was his sister he would tell me to DO IT! I was sitting on the fence but the more I speak with people who have "been there and done it" the more I'm convinced to really consider this. I'm learning there are more questions to be asked and I'm paying attention. Appreciate all the help and advise.
I had 4 treatment of Cisplatin. My treatment lasted all day since cisplatin is so strong. My veins also roll and blow so the had me get a port. It was the best thing when having chemo. They also don't warn you that after each chemo treatment it will take you longer to regain your strength, but when you do continue to walk etc to keep up your strength. They do warn you that foods you like may taste different - and that is true. I could not stand the taste of diet/regular coca cola, but could drink pepsi. Your taste buds do return to normal, they just take a while.
My hair did not fall out but got thin, they do tell you that there is a chance that you will loose your hair (not just on the top of your head, your eyebrows thin etc.). The thinning occurred at about the 3rd week after chemo. The 1st time it occurred was I thought for sure my hair was falling out and it was very traumatic (my hair was/is curly and about shoulder length) so I had it cut short in case it did fall out. If I had to do it again I would have waited before cutting my hair. Another person I know who also had cisplatin cut her hair prior to starting chemo, but it also just had thinning of her hair.
Ask any other questions you may have. Sending you good thoughts. Stephanie
Yes I have bad veins too. How often were these treatments. Your case seems to be similar to mine. We’re you able to work and concentrate. After each treatment how many days are pretty much worthless after the treatment. I guess I’m trying to figure out how to arrange a work schedule. Will I be able to do this on my own? Driving to and from treatments ?
I look a leave of absence from my job, on the recommendation of my oncologist. I started chemo in early January and finished chemo at the end of March. I had 4 rounds (treatments), 3 weeks apart. They will discuss all the possible side affects you can have - nausea, fatigue, diarrhea, etc. before you start chemo. I only had nausea right after the round and the next day, they will give you anti-nausea drugs. I had a both short lasting -4 hours, and a long lasting 8 hours, anti-nausea drugs. I would take the short lasting when I came home from a round, then the long lasting after that. I had fatigue bad and would have to spend my days on the couch. The 1st round I was on the couch about 3-4 days, by the last round I was on the couch about 2 weeks. I have a dog, I would have to get up and let her out and get us lunch etc., but the was no way I could have worked.
Cisplatin being as strong as it is, I would go back the next day a got a shot of neulasta- which reduces the chance of infection from low white blood cells. It is really expensive but fight to get it, since the person I know who also had cisplatin did not get it neulasta and had issues. When you get neulasta you need to take Claritin, must be Claritin, for the bone aches.
My husband used to take me to my treatments and then friends and family would sit with me till lunch and then he would bring us lunch and they would leave and he would drive me home. My rounds where from 9 am to 4sh pm. They would also give me a diuretic about an hour before I left the place, an when I say I had to go every 10 minutes, I had to go. Most time I barely made it home, 20-25 minutes. They will also tell you to drink a least 8 glass of fluid each day, and do- it helps your body to flush the chemo from your system.
I would recommend that someone take you and pick you up. I was very fortunate on my 1st round of chemo a friend who had chemo before came and sat with me. After that I was fine, but the 1st time it is the unknown- even though everybody at the place is very kind and understanding. If possible I would have someone spend the 1st few night with you following a treatment, and they can check on you throughout the day.
Always keep as positive attitude as you can, and realize you have pity parties ( crying etc. then pull yourself out of it and keep going.) I would keep telling myself when I was down that other people “did this” and so could I!
I hope I answered everything, if not please let me know. Let me know if you have any other questions.
Oh boy...I am self employed and my major work is at the 1st of the month and I can cram it into 5 days if I have to. No rides or anyone to stay with me. Most my “friends” are work associates. No family close by. This is definitely going to be a challenge. Thank you for the names of the drugs they gave you. I will post what the cocktail of the day is on Monday. Maybe there’s a medical. Transport. Lot’s to think about and arrange if this is the course. Thank you so much for your insight.
Is it possible for a family member to come a stay with you during your treatment? Look into your local cancer support group for recommendations on transport options etc. they will be a great resource as will your oncologist office. Don’t let yourself get overwhelmed- just take 1 day at a time. There is a whole support network here for you, so just ask.
Unfortunately my brother lives out of state and his wife has esophagus cancer. I haven’t even told him. I will let the dr know and maybe they have suggestions. Thank you again.
Talk to the oncology social worker. They can put you in contact with services to help you. Also you can use this link to see if there is a Gildas Club or Cancer Support Community near you. cancersupportcommunity.org/...
Missy, consider calling a church nearby and ask for volunteers to sit with you or someone from local cancer support group. By the way, I was diagnosed with stage 4 in 2013 and been in remission since 2016. I started off with Carboplatin and Alimta. Because I was ALK positive, I was able to take targeted drugs daily at home for one year, Xalkori for seven months and Zykadia for 5. After a reaction, I went back on Alimta every three weeks for a year.
Have been fine but recently diagnosed with breast cancer. Not related to lung cancer, but regular scan for lung cancer found the breast cancer. It was small and inside the tumor. The outside edge and lymph nodes cancer free. I am stage 1 and will be taking a daily pill which will decrease my chances of reoccurrence down to 5% over next nine years. So it looks like my lung cancer followup may have saved my life.
Why am I telling you all this? I guess I am trying to tell you that I believe staying positive, finding joy and hope everyday can make a big difference in how your cancer responds to treatment. Romans12:12 became my daily mantra during treatment.
As for treatment itself, I never lost hair. In fact, mine weirdly got thicker. I took something for nausea on day of treatment and had no issues with that. So that just proves how different each of us are.
I did have an issue with prolonged Qt wave in heart and that was why I had to go off targeted drugs. As for fatigue, I already had an issue with that due to an autoimmune disease diagnosed in 2005. Didn’t feel any different from what I was already used to. And if you are wondering, I am currently 74.
Looking to hear more from you after Monday. You can do this!
Oh no way Judy...you are truly on God special list. Thank you so much for sharing...me, God and Romans 12:12 are not the ones to upset in this fight so I’ll hang my hat on God and Faith and a little laughter and an uppity attitude anytime. I belong to a group from church and now I had to tell them that please pray but come back if or when it gets unmanageable. Half the battle is in the head anyway. I hate the arguments I have with myself...now I know how my daughter feels. She now comes every Wed night for Thursday treatment (9-5 just like a job lol). She stays through Friday and then sends over her nurse friends to check on my over the weekend...now I have to many people but thank God everyday so prayers are working...he is good and I am blessed.
I find true inspiration and uplifting love and concern with everyone who is in the cancer world. The fact that we share so much very heart wrenching and personal “stuff” (that by the way this group knows more than anyone about my diagnoses) shows how united in front we are. At first when you all started talking drugs I’m thinking...are all these people pharmacists. What are the odds...got it. They’re talking about putting me on the lower dose because of my hearing...ENT on Tuesday and oncologist will make the call after audio. If they say I have to extend then I definitely will NOT hear that!! At least not want to.
That is such a shame about the breast cancer but amazing they found...thank God for cancer right...i say that in jest. Let me at least give it a try and put a little smile on your face...so throughout the past months one of the dr.s (someone but not important at the time) brought to my attention...Ms. Missy...did anyone tell you your breast implant over the bad lung also collapse...I laughed so hard they brought in Psych but quickly left.
My answer...thanks for sharing, I’m not doing bikini commercials and put that on my bucket list of things to fix...I’m 61 just in case so I know you get it.
I am very lucky...so far so good and I know it’s going to get worse but only 3 more to go YEA!! LOL Bless all you and no treatment again until May 27th. And hair still intact 🤪
I’m pretty sure everyone is saying come on Missy...the weekend is almost over...wrap it...I find it calming to chat. Ok kids...got to take my ball and leave the sandbox... Happy weekend everyone and thanks...Miss Missy
PS...I hope to meet a lot of you one day That’s all folks🐰
I get to ring a bell?? hopefully one more fun than the one ringing in my ears LOL. Then that’s worth the price of admission. You’re fun Judy... now is that surviving the chemo or in general? Regardless I’m ringing that bell !!
Where I live, the cancer center has a bell you ring when your treatment is done. I personally have my own bell I can ring anytime I want. It is on my nightstand so if I wake up alive, I can ring my bell.
On the 27th I'm going looking for that bell...if they don't have one, I'm going shopping for the biggest bell I can find and gift it to the center! Then I'm adding one to my bedside as well...every morning I'm ringing that bell until the day I die just to remind myself how lucky I am... Stay tuned...
Oh boy...I'm going deaf! ENT says loss after first round...to much for his liking but he will discuss with oncologist. May let me do one more round of the Cisplatin but sounds like I'm being downgraded to the carboplatin? ...who knows. Will this do the job? I'm not sure my hearing can take another round...anyone?
I am 3 years out from my 2nd lung cancer surgery and the removal of my upper right lobe. The first was almost 8 years ago, when the upper left was taken. I do consider myself very lucky, my cancer was found early both times, stage 2 the first time, 1a the second. Both times lymph nodes were clear. If your oncologist recommends chemo, you should probably consider it.I tried chemo my first time, but due to other issues, my body did not handle it well. My second time, I should have had chemo, but didn't. (long story).
I also have emphysema, but still upright, still above ground.
Welcome. I don't think any of us here ever expected to join this forum, but here we are. I have been here for six years and found compassion, sharing and a lot of great advice and knowledgeable people. My tumor was discovered by accident and two thirds of my left lung removed at age 73. I decided to decline chemotherapy even though there was one node involved. Though the tumor did recur, I was able to have radiation therapy last summer which seems to have worked. The decision to have chemotherapy is one only you can make and depends on what kind of tumor you had. Since your surgeon is highly recommending it, I would do it. In my case, the surgeon did not believe it was necessary, though the oncologist did recommend it. Whatever your decision, I pray all goes well for you and you have a long and healthy life.
As Denzie suggested, make sure you understand everything you are told. If you cannot have someone with you, try to record the visit so you can go over it. Right now you are in a state of shock with so much happening in such a short time that trying to remember what is said will be difficult.
May the force be with you. Looking forward to hearing more after your oncology appointment.
That force and everyone's input is most certainly with me. I will do my best to garner as much info before my brain turns to fudge. Stay tuned on that oncology report. Fingers crossed I understand a little more after that appointment. Many thanks to all my "enlighteners".
Hi Missy,Welcome. There are a ton of great people here and significant knowledge. I’m stage IV lung and on immunotherapy. Was diagnosed June, 2020. Very frightening initially for sure. Things will settle down. Think positive and do what you can to help yourself i.e., exercise, eat well, massage, yoga, acupuncture, get a hobby, and play. Try not to focus on cancer 24/7. Focus on recovery. In my thoughts and prayers. 🙂🙏❤️🌻
Hi Missy - I had left upper lobectomy in Dec 2010 (stage 2b) 7cm tumour removed and diagnosed in Jan 2011. I'm also self employed - I returned to work in February for some assignments and full-time in March and returned to swimming then too. At that time the only testing done was for EGFR and I was negative as there were only targeted treatments for that mutation but now it's a totally different situation. I had open (not keyhole) surgery and was 52 and fit from swimming. I went onto swim much further after surgery than before and had regularly swam 130 lengths (25m) several times a week beforehand. Keeping active is essential - not necessary running/marathons or gym etc but walk, don't sit/lie around all day as lungs decondition and need to redevelop. I hardly told anyone as the ignorance/stigma about lung cancer is such that everyone assumes a poor outcome and I believed I wouldn't have gotten any more work... but we're all different. Yours has been detected and removed at an earlier stage. At the time I was told chemo didn't work on the specific rare type I had so it wasn't offered but now given the size of my tumour, it would be offered routinely. Different combinations are available dependent on the mutations in tumour/genome which is why so many tests are done. sounds as if you're overwhelming yourself with googling and much of it will be irrelevant given how early yours has been found.... so write down your questions, ask your oncologist and one of the most important ones is 'if I have any questions when I've left here, who can I contact at the hospital to find out more?' Lung cancer these days is much more personalised especially if patients have other conditions as well so your own clinical team will be able to tell you much more about what's relevant for your specific situation.... many people even with the same type may be offered different treatments.... but stay curious but try not to understand everything - it's a rapidly moving situation and much of the internet is outdated and inaccurate and any studies prior to 2015 have very little relevance at all today... good luck.
Also having brain scan before treatMeant. He wanted it to make sure. They seem to be very thourogh at least. Telecast with nurse practitioner who will go over all the potential side effects etc.
Skimming all the replies...I don’t have much to add. I’m so glad you are having MRI of brain and had CT scan. Stage 1: you CAN DO THIS! Yes, you will have to be resourceful. Let us know what chemo is being recommended and someone here can help you know what to expect. Standard of care, depending on your biomarkers, will be do-able. Yesterday was my 6years-from-diagnosis date with Stage IV metastatic nonsmallcell lung cancer. Have hope. Allow yourself to grieve. Put one foot in from of the other. Praying for you, Missy.
So kind of you to respond! I will be doing cisplain? And Permetrix every 3 weeks. Spelling is probably wrong butpedmetrix is in theAltium? Family and I believe otherwise know as Altima? I’m almost done with pre-tests , brain scan. B12 and folic acid during. 4 rounds and hope this gets it. May 5 th is my count down.
Yes. I did carboplatin and pemetrexed (brand name Alimta). The platin is the tougher of the two, but you likely won’t lose your hair, should be able to control any nausea with medication like zofran (TAKE IT before you feel sick, and keep on a schedule with it) and will suffer the most from what doctors call fatigue. As a patient, you will learn to understand that fatigue is not the same thing as feeling tired. My friends would say things like, “Oh, yeah, when my babies were young, I just could barely get through the day....” or “I can’t remember things well when I’m tired either.” Everyone wants to be able to connect and relate, but fatigue is very different than those things. I’m not saying this to scare you but to say that you need to go easy on your expectations for what you can “accomplish” during this chemo time. If you can live well each day with cancer, that is the accomplishment, not cooking or laundry or writing thank you notes. Get outdoors for a short walk as much as you can; its so hard to motivate to do it, but I found that to really help with my fatigue. Do you like podcasts and books? One of my favorites is Kate Bowler Everything Happens for a Reason and other lies I loved. Her first season of her podcast resonated with me especially as a forty-something with stage IV cancer (she is also-colon cancer) . And I think Steph60 above had good info for you about the Cisplatin.
Well that sounds doable. No hair loss? I like the sounds of that. I have a rambunctious 6 month old puppy that will be more than happy for me to go out and walk. I love books and have ordered a few. Audio might be better as my eyes are weary from all the apts etc so it will take up the infusion time. My daughter will be stepping in on the first round and hopefully she can get back for the other 3rounds. I have found a few people through the local cancer site that are willing to help if I need it. That’s it for now. Many thanks.
Oh all right. I had my call with the Nurse practitioner on Friday and had to just shake my head to try and get my mind on something else...which ended up with someone stealing my new car last night. So managed to get through that and go get all the drugs they called in and then...sat down and cried. Can't catch a break it seems so I decided to try and get all my work done for the month but it's hard keeping my mind on anything. This is really hard and I haven't even started. But Wednesday is the day and my daughter is coming in to take me on this round and we will try and arrange it for Friday on the next 3 rounds so she can help. I bet you're sorry you asked...but thank you for letting me vent. How are you doing?
Sometimes you need to vent and have a good cry. I don’t know if I told you before or not but I would have pity parties and have a good cry into my pillow. About a week after my lobectomy, I got a call from my mom’s care home ( she had dementia) that could only have 1 resident that was not ambulatory and she had 30 days to be moved. Thank god for my husband, in addition to taking care of me he needed to find a nursing home for her. We ended up moving her about 5 days before my heart valve surgery or about 1 month after my lobectomy. He was such a trooper taking care of me after my heart valve surgery, driving me to my appts since I could it drive, and stopping to check in my mom at least 2x a week. We made it through it, even though it was tough. So I know you can too! I am so sorry that your new car was stolen and you have to deal with that in addition to everything else. I am so glad to hear that your daughter was going to go with you for your 1st treatment. Just remember do not be shy about taking the med’s they prescribed. This is the time to put yourself 1st and take of yourself!
Let me know how your treatment goes when you are feeling up to it.
😢 thank you...I never thought I’d wish time would go faster. I cant wait for august when this is done and i can start living again. Ill circle back after Wednesday. You’re kindness is truly appreciated.
Hi Steph...so far so good. Went in at 9:30 and left at 5. It was long but doable. Got work done, napped, and ate snacks like a little piggy all day. Slept well...woke up well...ate a great breakfast (except watermelon and milk my favorites taste metallic so I'll forgo. My warning was day 3-4 so tomorrow and Saturday? I'm sure I'll be around for when it comes LOL. No dodging that bullet. Went to the park with the dog and did my walk as well. Was throwing in some work then might just rest for an hour. Friend is coming over for girlfriend overnight or two for the crappy days up. Friend of 30 years...you would have to be to saddle up to this cowpoke party!! Thank you for checking in. Very sweet. Getting ready to learn my new "norm". How are you doing today? Stay tuned...😊
I am doing ok. So glad to hear that it is manageable right now. Just rest and take care of yourself. I check on you in a few days to see how you are doing.
Ok...round one was fine until....made it through Mothers Day...Ear ringing and now to ENT. Nauseous but CBD gummies saved the day! Today is the real first day of I feel like "poop". Tried to walk my little man tucker at the dog park but didn't get far...but he still loves me
How are you doing? Prior to chemo they had me see an audiologist to do hearing test for base line. Then after chemo had to have another hearing test to determine if I had hearing loss for the chemo. It was determined that I had a little bit of hearing loss, but was still able to continue with cisplatin chemo. Hopefully the ringing in your ears is nothing serious, fingers crossed.
Hi Steph...yeah my hearing is suffering. Have a ENT apt on next Tuesday and see oncologist tomorrow. Since yesterday I felt great. If it stays like this until round 2 I'd be really happy. Went wig fitting yesterday...that was an experience. Still waiting on my stolen cars return...confusions says... is it really stolen just because you can't find it???## LOLLOL. So in between I'm car shopping. I had the best time yesterday on my first "feel good day". I bought a bag of wavy potato chips and a jar of onion dip and crunched them all up inside and ate the whole jar!!! For round two I had triple layer chocolate cake and didn't gain one pound! whoo whoo...ok for me that would have NEVER happened. So that's pretty much it...me and the Tucker man are going to the dog park and car shopping. Praying no annoying wave rolls over me...Thanks for checking in...now please enough about me...tell me about you...it seems you and I are on close lateral lines here so I guess we're stuck with each other until someone wants to join our pity party... I'm beginning to see how clueless most people are in life and how all the times I got my panties in a bunch about...? Really...it didn't even matter. I'm seriously thinking of retiring at the end of the year. I'm 61 and was waiting until 65 but life just got more interesting...besides...thank goodness I got that car theft checked off my bucket list...ok...I don't want you to call in the looney bin folks so I'll say goodnight...be well and safe and we'll catch up on the next round. Thanks for playing...
Hello to all...well had a small setback...Losing hearing (And not the best kidney or liver counts) after 1st round so they pulled the Cistapalatin and moved to the carboplatinum. Less time on Chemo hours wise. Got a new sassy short haircut seeing as my hair was having an affair with my hairbrush and requested to spend more time in my hairbrush...So add an ENT and a little ding to my hearing, kidney and liver...do we really need all these parts anyway???? So 3rd round (providing they go there after ENT test Wednesday) is June 17th...and last but not least 4th and final round July 8th. Hope everyone are doing well. Happy Memorial Day...
Sounds like you took a 1,2 punch. Fingers crossed that your ENT test goes well, and you are able continue the chemo. Where you able to find a car with everything else happening? Also, how is your job going, are you able to work on your good days? Just think-less then 30 days to go before all of this will be in your rear view mirror for a while. Try and stay positive!
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Having cancer is exhausting...does it ever end?
chemos?
