Welcome New Grace Members - 1272926

catdander
Posts:

Hello to all the new Grace members! I'm Janine and I am one of the moderators here along with Jim. I hope to start seeing your questions and thoughts.

Be sure to sign up to receive our weekly email that brings all of our new content right to your inbox. You can sign up here for our weekly GRACENotes Digest.
Glad to have you with us!

Forums

shelly7
Posts: 1

Hello I am happy to be here. I have NSCLC DX 12/12. Had a right upper lobectomy. Had two rounds cisplatin/alimta then had blood clot in port. was fine until 2014 when mets to spine was found. Had radiation to spine. Then on Tarceva until this month. Now it has stopped working and I have numerous new masses in right pleural area with a small effusion. Will start Alimta chemo Monday. Any input will be helpful. I am 59 and never smoked. Thank you Shelly

marshwilliams
Posts: 1

Hello all. I m Marsh. this is my first post for my intro. I'm actually looking for mesothelioma patient, and know more abt it. thanks

kenuck1
Posts: 1

I'm not sure how to tackle this but anyway name here is Ken, 71 yy and live in Ontario Canada ,I was diagnosed about 10 weeks ago as having lung cancer, had 3 x3 Chemo's so far, Oncologist was quite pleased with my progress after the 'hand" inspection he made 2 weeks ago, I have read quite a bit about some treatment that is done in Cuba, Canada is evidently taking part in these treatments and I was wondering if anyone had any input regarding them

jwelford
Posts: 10

Hi, i'm new to CancerGrace. My name is Joleen and we are waiting for my mom to have a pet scan, MRI and bronchoscopy/biopsy next week. They found a "fist sized mass" in her lung last week, along with a pleural effusion which did not show any malignancy. Very nervous for the test results, and waiting for her to have a PEG tube placed as the tumor is not allowing her to keep food down. I'm 34 weeks pregnant and truly hoping she will get to meet her grandchild. I've read the lung cancer statistics and am having a hard time staying optimistic. Any experiences, advice, etc would be greatly appreciated!

jimb14830
Posts: 2

Hi everyone. I'm new to Grace, have stage 4 lung cancer with metatisis to the brain and abdomen. I am presently getting radiation therapy to the brain. I imagine I will be asking a lot of questions and seeking advice in the near future. All response will be greatly appreciated. May God bless you all. Jim

catdander
Posts:

Hi jimb, welcome to Grace. I'm so sorry to meet you under these circumstances. We will be here to answer questions as you have them. We also have a great library of informative discussions for patients and loved ones as well. Don't hesitate to ask.

Best of luck,
Janine

jimb14830
Posts: 2

Thank you Janine. I will having a bronchoscopy done tomorrow 9/30/2016, to get a biopsy. Hopefully, I will then know exactly which critter I'm dealing with. Finished with full brain radiation treatments yesterday 9/28/2016. Right now I don't have cancer, cancer has me. I hope to turn that around soon, with Jesus, all the support I'm receiving, medical tx.s, and help from GRACE. Thanks to you again!

fifa17bella
Posts: 1

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tripletmom
Posts: 4

Thank you SO much for this site! I found great info on this site when I was originally diagnosed with NSCLC in 2014. After my lobectomy in Feb. 2015, staged 1B, I assumed I would be cancer-free forever. Unfortunately, this week a CT revealed that the cancer has returned in both lungs and I am eager to gather as much information as I can to give myself the best outcome possible.

catdander
Posts:

tripletmom, Hi! I just saw your post. I can't say how sorry I am to know you've progressed after such hopeful treatment. With an EGFR mutation you can do very well for a very long time. Have those 3 kiddos help out. Although teens are still so so young I'm sure they want to be there for you as much as possible. Don't underestimate their resolve or need to help. And let us know how we can help.

All the best of hopes for you and yours.
Janine

tripletmom
Posts: 4

Thank you so much for the reply and words of encouragement, Janine! In addition to the moral support, this site has already provided me with invaluable answers to some questions I've had regarding first line treatments (e.g., Afatinib v. Tarceva, Immunotherapy v. oral targeted therapy for EGFR mutations).

Thank you again!

catdander
Posts:

Hi Tanya, Welcome to Grace. We're happy to have you and we're here to help in any way we can.
Janine

nance
Posts: 3

Hi, My name is Nance. i was 5yrs post squamous cell or lower r lobe remove, than 5 mos chemo cicplat and gemzar...life was good- then had critical drop in sodium level (110) ended up in hosp where they discovered a new primary small tumor in myL l upper lobe they say it is causing the sodium problem. more studies being done to find out the exact dx, other than malignant, also lot of nodes floating aroung my right lung, they are telling me this is a "new" primary not associated with my prior squamous. and not squamous this time. i am joining your group, so when i get details,i can find out more. thanks for letting me be part of this, i will be contacting your group with more information, and am still in shock, i had been feeling so good about beating lung cancer. (faces of lung cancer referred me to you folks. thanks so much
ee

9

catdander
Posts:

Nance,

Welcome to Grace. This isn't the place you want to need but it is an excellent place for when you do. I'm so sorry you're doing through this again. It's true that squamous isn't a type of cancer that is likely to return after more that a month or 2 so it makes perfect sense that your doctors presume it to be a new cancer. Let us know when you find out more. Let us know how we can help or if you just need to vent. You're not alone.

Janine

nance
Posts: 3

yep, got new path report- siadh due to a small cell undifferentiated type. not pretty at all. oncologist is gung ho to start chemo- with the SIADH caused by the small cell tumor, from what i have read, my prognosis is pretty grim. i feel like i have no choice though. if the SIADH won't get better until the tumor shrinks, it's a catch 22 for me. i have to try to shrink the tumor. funny thing is i swore i would never do chemo for small cell, due to the low survivial rate. god has played a little joke on me. gotta give it 200% to try. i have a great support group, and some fine docs, but can use all the info, and facts you folks can offer. I am a realist is what I consider is a realistic attitude. not real stupid. BUT if my docs are giving me 150%, then I need to give it even more. thanks for any info you can provide. Many t

rich4life
Posts: 3

Hello, new to the forums and would like to find a user here, can we message between users?

nance
Posts: 3

i don't have that answer, but i am willing to discuss others and my own diagnosis to learn more about it.
would love to get more information.

catdander
Posts:

Hi rich4life,

I'm sorry but we don't have private messaging. That one flaw of the system we use that is literally the #1 priority fix for our new site (TBA). If you would like to email me or our manager Denise with the info on the member you'd like to contact we can sent an email to that person with your email addi. It's a long workaround but it works.

catdander
Posts:

Hi Nance,

I'm so sorry about the diagnosis. On a positive note it's very possible to get a cure with treatment at this stage so cure is the assumption I'll take for you while you move through this process. We have a lot written on the subject of limited stage sclc both in our forums section and in our blogs posts and video section (aka pushed info).
This is a good place to start, http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…

http://cancergrace.org/lung/2015/10/14/gcvl_lu-ga04_radiation_managemen…
http://cancergrace.org/lung/2015/10/09/gcvl_lu-ga02_pci_limited_stage_s…
edited to add one more, http://cancergrace.org/lung/2010/04/01/surgery-for-limited-sclc/
this is a search result from our website with the search term "limited sclc", http://cancergrace.org/lung/2010/08/07/treatment-of-small-cell-lung-can…

Take a look around, do your own searches and don't hesitate to ask questions.
It will help if you start another thread specific to your question so we see it and others with similar questions can reference it as well.

I hope you do very well,
Janine

rich4life
Posts: 3

Thanks for the reply Catdander, I am trying to reach out to Sherry, I havnt seen any cuurent post from her and was wondering if all is well

catdander
Posts:

Sorry for the plethera of choices Rich. Are any of these the sherri you're looking for? If you're not sure you can do a search for the one you think it is so to bring up a post.

eyhsherri74809
naevesherri
sherrieblackwell
sherriem69
sherriemcalliste
sherrieupchurch
Sherrik
Sherripii

or Sherry

azsherry
Select sherry
Select sherry11116
Select SherryB
Select sherryb111
Select sherryc1965
Select sherrys
Sherry Stoll
Select sherryspa
Select sherrywitcher15
Select sherryyan

catdander
Posts:

Oh ok I just read your edit. Do you mean our dear Sherry Stoll (SherryS)? I'm so sorry to have to write this but we've lost Sherry to lung cancer. She was a good friend to so many of us who never met her in person but still provided so many with hope and love for the life we have.

catdander
Posts:

Rich,

That's weird it does just have her first name on the user icon but she's registered as sherrys. Unfortunately that is the Sherry Stoll I told you about in the previous post. To make sure this is her member page, http://cancergrace.org/users/sherrys
This is her facebook page still up, https://www.facebook.com/sherry.n.stoll
Let me know if this is her.

All best,
Janine

aford8647
Posts: 1

New member. Hoping to find information and support for my friend as her caregiver. D.C. 10/2016 with stage 3a lung cancer, anterior Right middle lobe, as well as, lymph node on right mediastinum. Having severe COPD, not a candidate for lobectomy or resection of lung. 11/2016: Received six weeks of radiation and chemo (carboplatin and taxol). 2/1/2017: 3 brain mets discovered. Currently receiving WBRT for 5 treatments. 2 down, 3 to go. Brain scan in Nov did not show any metastasis. The type of lung cancer is adenocarcinoma non-small lung cancer. The metastatic brain lesions seem to have appeared very quickly. My question is: How rapidly does a cancer cell multiply? I thought I read the cell division occurs within 6.4 days, but I haven't been able to locate the article I read that in. Do you have any incite you could share?

catdander
Posts:

aford8647, I'm so sorry I didn't see your post. As a sticky thread I should have seen it first but I just didn't notice a new post. Your question is probably a moot point now. I hope your friend is doing well after wbr. I know he/she could be experiencing side effects and hope they aren't debilitating. If so you should know side effects like fatigue can seem like they won't end but they do.

The growth rate of cancer even specifically nsclc is extremely variable and any number you find would at best be the median figure of 1000s of people's nsclc.

A next step most oncologists would take would be to watch and wait without further treatment. It's possible that the cancer is still completely gone with the treatment you've mentioned. The only way to know someone is cured is to wait to see what happens. This is done with regular scans and in person onc checkups.

Please know you can ask other questions if you have them. You may start a new thread that one of the moderators will surely see.

All best,
Janine

pattiathome
Posts: 3

Hello to All! I have recently been diagnosed with mucosal melanoma in the paranasal area and would like any info that I can obtain about it including experiences from other with MM patients. I have had 2 surgeries and the second had clear margins. I know that this is rare and highly aggressive and I am seeking any info such as the staging process of it and any future methods of determining any further progression of it. Thank you!

catdander
Posts:

Hi Pattiahome,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the best!
Janine

catdander
Posts:

Hi Patti,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the Best!
Janine

catdander
Posts:

Hi Patti,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the Best!
Janine

catdander
Posts:

Hi Patti,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the Best!
Janine

catdander
Posts:

Hi Patti,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the Best!
Janine

catdander
Posts:

Hi Patti,

Welcome to Grace. I'm sorry it took me so long to respond. I'm remiss in checking the sticky threads sitting right on top of the forum pages, supposedly making it easy to see. I'm sorry you're going through this but hope you are done with it, it stays away and can become a memory. Unfortunately we don't have information on melanoma but melanoma.org appears to have a complex array of information and useful tools for those who have a melanoma diagnosis including a forum. Following is a link to their melanoma forum search results of "mucosal posted on or before 11-1-2016". I would further investigate this site. https://www.melanoma.org/find-support/patient-community/mpip-melanoma-p…

Hoping for the Best!
Janine

dearjoyce
Posts: 1

Just a newcomer here dropping by to say "Hi."
My name is Joyce and I am from Florida.
I am looking forward to having great interactions with you in the future. I guess that's it for now, you guys have a good day!

JimC
Posts: 2753

Hi Joyce,

Welcome to GRACE. I'm sorry that you need to be here, but please let us know if you have any questions, and we'll be happy to help.

JimC
Forum moderator

marcy222
Posts: 5

Hi. I have been dying to ask a question, but do not seem to be able to figure out how??????

My question is this.......can a new pure ground glass opacity show up after never having any before and last CT of October 28, 2015 showed nothing pop up at 2 cms X 2.2 cms on July 26, 2017 scan.

I had an incidental one found on lower scan dated 4.25.17 that went away on this one but now it shows I have a large on in upper left lobe and two smaller ones in left lingual .6 X .8 mm and in lower left lobe of the same size.

I was put on antibiotics after one in April that went away and now have been put on antibiotics again (completed ) to rescan in 6 weeks.

In October 26, 2015 scan they did find for the first time mild bronchiectasis in upper left lobe and some atelectasis in bottom left ( the later has gone away).

Can a huge one pop up after 639 days when there were none evident?

Freaking out Is an understatement!

Thanks so much for any help!

Marcy Roney

catdander
Posts:

Hi Marcy,

I'm sorry you're having a difficult time. Since we're a cancer education site we don't have specific info on bronchiectasis but it appears bronchiectasis causes a lot of infections. Though on the large size for infection 2.2 cm isn't so unusual to think it can't be infection, especially with bronchiectasis. Even if it is cancer and took 2 years to grow to that size it would be considered quite slow growing (indolent) and at 2.2 cm still fairly small. It sounds like your doctors are on the right path of treating it with antibiotics and like the infection it probably is. Watching and waiting is the right thing to do no matter what it turns out to be.

The following link is to a discussion on ground glass opacities (ggo) that may be of help.
http://cancergrace.org/lung/2013/04/13/follow-up-duration-for-ground-gl…

I hope you do well.
All best,
Janine

sensitivesoul
Posts: 1

Hi, I am a new member though 1.5 years out from diagnosis of NSCLC, EGFR. I am 62 female never-smoker.from LI, NY. Originally diagnosed in my lumbar due to severe pain, primary found in lung, mets to bone & brain. Two biopsies, two Cyberknifes: lumbar spine and brain. Radiation to spine and left iliac crest. 9 months on Tarceva; had every side effect with no benefit. I have been on IV chemo for 5 rounds (every three weeks) with Avastin, Carboplatin & Alimta. Avastin was removed after 3 sessions due to severe constant headache (still have). Nausea and bloating. My Onc will now put me back on Tarceva or member of same family. I am not a candidate for Tagresso; my mutation did not change. If Tarceva was ineffective for 9 months why would it be considered again now? Would a re-challenge of Tarceva possibly work? Cyberknife worked well on lumbar and brain; they continue to monitor MRI every three mos. Tumors in right lung are staple, no shrinkage, no new ones after IV chemo. Are there any others Chemo pills to be recommended at this time?

irinabcra
Posts: 1

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louiesmadhouse76
Posts: 3

My name is Lee-anne im 41 and have just this week found to have a suspect mas on my lung am awaiting PET scan and biopsy to see what we are dealing with.
So far all other ct's show no other lesion's.
Scared is an understatment.

catdander
Posts:

Hi Lee-anne,

I'm so sorry you have this scare. I hope it's not cancer. Please keep us posted and in the off chance it is cancer please know that we are here to help.

Best hopes,
Janine

pondman2008
Posts: 2

My wife started experiencing generalized upper thoracic pains 3 months ago. We visited no less than 7 local practitioners, she spent a month on physio with Tens treatment without relief. Pain increasing almost on daily basis. Met with an irresponsible chiropractor that probably should only practice on Sear's lifeless mannequins, not humans with extreme pain.
Eventually, by presenting ourselves at hospital Emergency and not accepting generalized diagnostics, we came to learn of "abnormality at T7 with pathological fracture and compression and lytic destruction of much of the vertebral body, consistent with metastatic lesion".
At this finding, she was given morphine for pain. The morphine provides some short-term relief and now we are going on to learn more ab this condition.
Now we seem to have something on which to focus.
I find extreme difficulty in accepting that she had to continually accept inconclusive diagnoses from so many practitioners. It seems her visits were scripted: questions asked, answers typed into a computer and little local or practical options considered.
In one situation, a triage nurse apparently disagreed with the software diagnosis. She enquired from a colleague, who indicated to accept the software qualification.
I hope with support and information through Grace, we will achieve comfort in the short-term and curative results.

cards7up
Posts: 635

pondman, was she diagnosed with cancer of any kind? I can't imagine any PT or chiropractor treating anyone who hasn't had a current xray. I known they didn't with me when I had a compression fracture of the T11. They did do a biopsy and thankfully mine wasn't cancer related but osteoporosis. Another whole can of worms! Are you located in the US? Sometimes we need to advocate for ourselves or our loved ones and push to get what we feel we need. Wishing you all the best. Take care, Judy

pondman2008
Posts: 2

Hi Judy,
Fortunately, the diagnosis is NOT cancer at this point. The suspicion seems to support cancer on the basis of uterine cancer nearly 20 years ago. We are in Ontario Canada with socialized medicine. I assure you that this is the kind of "benefit" I would wish for everyone.
We are now scheduled for a needle biopsy tomorrow. From this extraction, we will know if it's cancer and presumably the exact source or cause of it.
From that our oncologist will then provide the strategy and aspiration.
We have our fingers crossed for a good outcome.

JimC
Posts: 2753

Hi Mark,

Welcome to GRACE. Please let us know if you have any questions, and we'll be happy to provide answers. It's good to have you as a member of the GRACE family!

JimC
Forum moderator

markstoinis
Posts: 4

Thank you so much JimC for your kind words. Glad to be a part into this community. lol