Been wanting to write this for awhile - Lung Cancer Support

Lung Cancer Support

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Been wanting to write this for awhile

Gwennewcomer profile image

I had my right upper lung lobe removed in May 2018 due to stage 1 NSCL cancer. The doctors here at Rex Hospital in Raleigh, NC didn’t feel I needed Chemo. Around August 2018 I asked my Surgeon to refer me to an Oncologist so I can ask them if Chemo is an option for me. At that time the oncologist said they didn’t feel it was necessary because the surgeon had got all the cancer and that if I got it I would being doing myself more harm possibly then good.

In Jan 2019, I started getting bad head aches, neausea, falling over while standing and squatting. My primary doctor sent me for a head scan and sure enough my cancer had moved to my brain. Then my primary doctor sent me to my oncologist where through a CT scan they found active lymph nodes in my neck which probably moved the cancer to my brain. I was at that time diagnosed as Stage 4.

Immediately I started head radiation for 10 days. When I was done with that I ended up in the hospital several times with dehydration and then the last stay I had phemonia with blood clots in my lungs and the back of my left knee. I was then put on elequist and heart medication.

In March or April 2019 I started:

Immunotherapy - Keytruda

Chemo - Pemetrexed -Alimta

Chemo - Carboplatin - Paraplatin

The brain tumors were shrinking and my lymph nodes but due to my being so neauseated and dizzy they wanted to keep me on Immunotherapy only so my quality of life would get better, which it has.

My last CT scan showed my lymph nodes increased in size by a couple of mm. The oncologist said that sometimes it happens and then they shrink back. My next scans will come the week of Christmas. I pray to god the scans show shrinkage to the lymp nodes.

The question I have is while on Immunotherapy does it ward off the cold flu or the stomache flu?

Sorry my post was so long but wanted you guys to know my history in case you have any questions.

Feeling very lucky. ❤️❤️

33 Replies

So sorry you went thru all of that they should have started you sooner the surgeon and oncologist. Did you get pet scan if not you should have. They would have known sooner and could have started treatments. I'm hoping things work out for you. There is hope and don't give up keep fighting . I'm here for you if you need to talk or rant it's ok we even smile and laugh. It keeps our minds off of it for a little while.if I don't know something one of the others will. So welcome hope to hear. From you soon. Love susiejo1948

Thank you SusieJo. I have had several PET scans this year since the brain tumors were found and one last year before the surgery for my lung cancer. I agree the surgeon and oncologist should have started me sooner on radiation, chemo and immunotherapy. Thank you.

I am so sorry that you this has happened to you and it's incredibly shocking to me. I had stage 1 nscl (around the same time) and also was told I did not need chemo. I had have 3 scans (one every six months) and they have found no signs but I am always worried that any ache and pain but be a recurrence. Are the scan's enough? I am saying a prayer for you.

Hi longlive. My family and friends were shocked I didn’t get chemo after the removal of my upper right lobe.

Are you having both MRI of the brain and CT scans of the neck to the pelvis? That’s what the oncologist is doing to me now every couple of months since they found the lymp node and brain tumors at the beginning of the year.

I only get CT scans from the neck to the pelvis

I had an entire lobe taken out as well

I had stage 1b 2 cm tumor

Egfr mutation

I have not had an MRI

This is worrisome to me... I too had my upper right lobe removed, stage 1a2 NSCL, and was also told I didn't need any follow up after surgery. I too went to an oncologist, and he said the same thing, no need for radiation or chemo.

I just had my fist CAT done since surgery, and everything was clear, but like longlivethequeen, it was only from neck to pelvis.

Could it be that it has to do with the type of cancer as far as mutation? Mine is also EGFR. What mutation did you have Gwennewcomer?

I’m sorry if I got anyone stressing over my story. I need to get back to you about what kind of mutation I have.

Your story is important to share and may help others to be more proactive in their care and treatment. Never feel but you're hurting anyone, by sharing your experience you may actually be helping them. 💜 Knowledge is key in fighting this dreadful disease. additionally if anyone is not happy with their oncologist or questions the treatment options it's always a very good idea to go for at least 1 second opinion.

Thank you for the info longlive.

Denzie profile image
DenzieModerator

Neither the Keytruda nor the Merck websites indicate anything about flu or colds. If no one checks in with experience I would call my oncologist and ask those questions.

Either way I would still caution you to be vigilant about exposure and washing your hands.

Gwennewcomer profile image
Gwennewcomer in reply to Denzie

Thank you Denzie. I live in a house with school age children age 5 and 12. I use antibacterial soap and hand sanitizer like crazy. Everyone at my house this week had the stomach flu except me. I will ask my oncologist next week about this.

It would be good to talk to your oncologist about the flu and pneumonia vaccines. My onc has me taking both, although the pneumonia vaccine is not annual. The caveat is that the nasal vaccine - if they still give it - is LIVE and we should not take it, while the injection is dead and is acceptable. The pneumonia vaccine has not prevented me from getting pneumonia, but it has made it far less potent than before. I am on the tail end of a cold that turned into pneumonia; my fault though - I tried to manage it myself

Gwennewcomer profile image
Gwennewcomer in reply to anrean

Thanks for the good information. I did have both the flu and pneumonia vaccines in Jan of this year. Hope you feel better soon from the pneumonia.

Sorry your cancer returned. I was also told in Dec 2010 when I had a left upper lobectomy that the specific type of NSCLC I had (mucinous BAC) did not respond to chemo so to get on with my life. Thankfully apart from several severe chest infections in recent years (and some other symptoms earlier on), mine has been kept at bay. The decision really depends on the molecular make-up of the tumour and the characteristics of the patient's genome. Back then there was only one target - EGFR but that's no longer the case with many more treatments around. Glad you're getting treatment and now as you say there is immunotherapy - so much more to hope for. Re 'flu and pneumonia shots - I've had the flu one each year and this year told to get pneumonia jab as I had pneumonia a couple of years ago and was in isolation last january with another respiratory virus so deemed at risk despite not fitting the age criteria. Thanks for posting your story - it shows others the different treatment options and also how you've coped so far - may you continue to respond. I'm now involved in cancer research and heartened by the many new treatments in development and clinical trials to help others. good luck. x

Thank you for responding to my post. I’m sending prayers your way.

You're welcome. Thanks for your kind wishes.

So terribly sorry for your situation. To go from Stage 1 to Stage 4 just like that & because of a onc's horrible oversight is dreadful. You deserve much credit for the brave way you are dealing with this. May the treatments produce good results!

Gwennewcomer profile image
Gwennewcomer in reply to Lyubov

Thank you for this post Lyubov.

Wishing you the very best and hoping your next scan will show improvement.

I'm sorry that you cancer advanced, sadly it happens to far too many. I was diagnosed at Stage IV, all due to sudden neurological changes and an urgent head CT showing a brain tumor. At first I thought I had brain cancer but then after a week of hospitalization in many tests it was determined that I actually had stage 4 lung cancer and that I had spread to my brain.

the good news is that today now four and a half years later I am in a state of remission and doing well.

I had my brain met treated first by CyberKnife back in 2015 and it has never returned. I then went on Carbo and Alimta and did quite well in that for a time but then had progression and moved on to immunotherapy, in my case Opdivo which was my lifesaver. It worked amazingly well and within a matter of months all my tumors have shrunk and now we just have a tiny bit of scar tissue.

Immunotherapy treatment will not ward off any colds or flus and you'll have to be cautious, especially while chemo too. As matter of fact I just had a flu vaccine and have had one every year including during the time I was on Opdivo. I would talk to your own oncologist and ask if they recommend it for you as well.

Take care

Lisa

Thank you for this info ThePurplePlace. Prayers that you stay in remission.

For those who have the EGFR mutation, there are Targeted Therapy (drugs) used specifically for this mutation. Here is more info - lcfamerica.org/research-gra...

It's used before chemotherapy in EGFR positive patients, but I'm not sure what Stage they start using it. I'd definitely talk to your Oncologist if you do have this mutation, to find out more this treatment. It's a very effective treatment for many.

KimGO2 profile image
KimGO2Partner

Hi Gwennewcomer,

Thank you for sharing your story with us. Wow, you have have been through so much this past year. Sending hugs to you! Definitely, ask your medical oncologist about immunities with your current medications. Discussing flu shots and dosages should always be part of the discussion this time of year.

Were you diagnosed as stage IA or IB non small cell lung cancer?

According to the NCCN guidelines (these are US national recommendations help guide the treating physicians in evidence based care), for Stage 1A workup before surgery-it is recommended that you have mediastinal evaluation before having a lobectomy, making sure you are a true candidate for surgery (not advanced). Many times this is performed before going to surgery at the time of tissue biopsy. Checking the lymph nodes helps with your staging to determine the best treatment recommendations for you. You should also have a PET/CT scan prior to the surgery. If during surgery, the surgeon resected an appropriate lymph node sampling and the actual tumor margins were clear, the follow up treatment recommendation is to observe. Brain MRI is not recommended.

For stage IB workup prior to surgery, it is recommended to have the PET/CT and mediastinal evaluation. Brain MRI with contrast is optional. This is according to the latest NCCN guidelines from 11/6/19. For treatment of 1B with clear margins, it is recommended to observe or give chemotherapy only if high risk.

With either stage IA or IB during observation, you should have had a repeat CT scan with contrast every 6 months. PET/CT or brain MRI is not routinely indicated while under routine surveillance after completion of definitive therapy (surgery or could have been Radiation therapy). If a recurrence happens, that is when the PET/CT and Brain MRI is recommended. Anytime, there is advanced disease by recurrence or progression, then new tissue biopsy or possibly blood biopsy is needed to see if you have any identified molecular markers that could be targeted.

We would be glad to speak with you personally. Feel free to reach out to us at 1-800-298-2436 or by email at support@go2foundation.org. Be sure and check out all our resources to help at go2foundation.org/resources.... You are not alone and we are here to help you and your family.

Warmly,

Kim

Gwennewcomer profile image
Gwennewcomer in reply to KimGO2

Thank you for the good info KimG02. I believe I was 1A for NSCLC and they did do a PET scan before surgery. It sounds like my doctors followed the guidelines.

KimGO2 profile image
KimGO2Partner in reply to Gwennewcomer

For stage IA, it does sound like they did just as long as they did appropriate nodal sampling before and during surgery. Glad to hear they did a PET beforehand and looks like nothing showed up to warrant further workup at that time. Sending you hugs, Kim

Gwennewcomer profile image
Gwennewcomer in reply to KimGO2

Yes they did the nodule sampling during surgery. The surgeon took the stance of if the lymp nodes in the area looked ok he would continue with a wedge test and once positive for cancer took the upper lobe.

KimGO2 profile image
KimGO2Partner in reply to Gwennewcomer

If you ever feel like you need a second opinion or interested in a clinical trial, we will be glad to help.

Warmly,

Kim

Gwennewcomer profile image
Gwennewcomer in reply to KimGO2

Thank you Kim.

How terrible that this has happened to you? Why in the world did the surgeon & onc wave their hands off at the possibility that the surgery didn't get it all? And reading your dreadful situation scares me because I, too, had a lobectomy of right lung middle lobe in May 2019. It contained a adenocarcinoma Stage 1. I too have been told no further treatment & do CT in March (CT in Sept showed no enlargement of a couple of nodules in other parts of that lung). Now I'm starting to worry.

But let me turn back to your situation & wish you the best treatment(s) & results possible.

Gwennewcomer profile image
Gwennewcomer in reply to Lyubov

Lyubov according to Kim02’s reply the drs we’re doing the correct protocol for at the time stage 1a. Honestly I was upset at first but I feel I’m lucky to be alive still. I too wish you the best of luck with clear scans. ❤️

I am so sorry that you had to go through this. When I was diagnosed they thought I was Stage 1 and told me that surgery was all that I needed. I ended up stage 3 after surgery as the mass was bigger than they thought and they found microscopic cancer in one lymph node. So my advice to you. Did you have a biomarker profile done on your mass? If not request one immediately. If you are ALK or EFGR there is targeted therapy that keeps people alive for several years. Go to a larger cancer facility than Rex Hospital. I used to live in Raleigh. Duke is much better than Rex for cancer but I would consider John Hopkins or MD Anderson in Houston to get another opinion. They are doing novel things to keep people alive. The smaller hospitals do not give the same quality of care as the large cancer centers. You need options. Yes get a flu shot, pneumonia shot and shingles shot when you can if you haven’t already. Good luck to you! God bless you!

Gwennewcomer profile image
Gwennewcomer in reply to Gatorb8

Thank you for the info Gatorb8. Do you go to Duke? What are they doing about your lymp nodes? I can’t get the shingle vaccine because I haven’t had chicken pox. Good luck and may god bless you too.

No I live in Florida now but I did travel to MD Anderson for my treatments and surgery. After my lobectomy, they determined that I had microscopic cancer in my lymph node closest to the mass and I had 3 months of chemo. I am now cancer free and just getting scans every 3 months. Good luck to you!

Gwennewcomer profile image
Gwennewcomer in reply to Gatorb8

Thank you again. Good luck to you on your future scans.

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