Update on Poppy Jo - 1251066

poppyjo
Posts:33

12/3 lung scan results Stable. Continue Tarceva 150 MG with some exceptions: New clusters of nodular opacities in both lungs. And some from last scan increasing in size and number. Probably lung infection MAC/MAI (fighting for 4 years, can't seem to get rid of it). Doctor to consult with radiologist for some clarity on findings. Appointment with ID doctor on 12/10.

Overall, my oncologist is HAPPY and I am, too. Next scan in March 2013.

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Reply # - December 7, 2012, 04:27 PM

Dr West
Posts: 4735

Sounds very good overall. I have a few cases where there are a couple of different things going on that are superimposed on each other -- always tough. sometimes we consider getting tissue from a bronchoscopy or CT-guided biopsy directed at the area in question, but we try to use any clues we can extract, along with our best judgment.

GOOD LUCK, and thanks for sharing some good news.

-Dr. West

Reply # - December 8, 2012, 06:56 AM

poppyjo
Posts: 33

Thanks Laya and Dr. West.

Dr. West: I had a left VATS biopsy 4 years ago and a cluster of nodules yielded nothing. Then, several months later a failed CT-guided biopsy of a growing nodule on the right lung. The day of the procedure the nodule shrunk and it was too small to biopsy, so that procedure was cancelled. I was very frustrated at that point so I waited 5 months till the doctors told me the infection or ?? was worsening so I had the bronchoscopy which diagnosed the MAC/MAI infection. I was on multiple high strength antibiotics for 18 months and when I was to get off of the antibiotics the ct-scan showed a nodule that doubled in size. It turned out I had lung cancer, too. My case is difficult and unusual to say the least. But, I have faith and confidence in my doctors.

To note: The way I found out I had a lung problem 4 years ago was I coughed up blood 2 times, and I had no other symptoms.

I will wait to see what my doctors recommend for the new nodule clusters.

Thanks again for your reply to my update.

Reply # - March 1, 2013, 03:50 PM

poppyjo
Posts: 33

2/27/13 Scan stable. A left lung nodule is growing but very small. Both my oncologist and the radiologist agree to wait and check in 3 mos. I still have the lung bacteria infection from 2008, so can't tell what is going on at present. Other clusters of nodules are unchanged. Continue Tarceva and rescan in early June.

A 5 year anniversary for me is coming up on 3/19/13 for my parotid cancer (head/neck). It has not returned. It was a Grade 1. No chemo or radiation. It required 2 surgeries. One to remove the tumor, and an additional surgery when the pathologist (for a 2nd opinion) at Mayo Clinic diagnosed as a mucoepidermoid carcinoma (primary).

My lung cancer is my 2nd primary.

Well, I wanted to share my news.

Wishing everyone a good day and best wishes.

Poppy Jo (Jane)

Reply # - June 7, 2013, 03:21 PM

poppyjo
Posts: 33

I wanted to give a quick update on my latest scan on 6/4/13. I have some new spots in both lungs, some spots are unchanged and some are gone. I still have the lung infection so can't really tell what is going on. I feel fine. Next scan in early Sept. Overall, my oncologist says stable. Continue Tarceva 150 mg

My best wishes to everyone.

Jane E.

Reply # - June 7, 2013, 04:42 PM

JimC
Posts: 2753

Great news, Jane! We like stable! Time to relax and enjoy and not think about any of this until your next scan :) :) :)

JimC
Forum moderator

Reply # - June 7, 2013, 06:51 PM

Dr West
Posts: 4735

That really sounds very encouraging. I'm glad that the overall assessment was that things continue to look stable.

-Dr. West

Reply # - June 8, 2013, 06:26 AM

poppyjo
Posts: 33

Thank you everyone for your responses. I am just so glad things are stable. It is a constant worry on me and my family. I have a support circle of friends/family that keep my spirits up and your caring responses help so much, too.

I see my infectious disease doctor next week and he has been pushing for another biopsy but things are too small to proceed. I have a strong feeling I'll be back on antibiotics (as a caution) for the lung infection. Oh well, I trust his judgement.

Take care and I pray for all of you on GRACE.

Jane E.

Reply # - June 8, 2013, 11:00 AM

marisa93
Posts: 215

Great news on being stable!!!! Try to relax for now and enjoy life, family, and friends:)

Best of wishes,
Lisa

Reply # - September 9, 2013, 10:41 AM

poppyjo
Posts: 33

9/3 update: lungs/abdomen/pelvis ct-scans are stable. One new finding is a stone in my gallbladder (watch & wait for symptoms). Some liver function tests were elevated. Repeat blood tests in 2 weeks. I also started using a Magic mouthwash as my mouth lining has been red and irritated. I am seeing some improvement in my mouth. Continue Tarceva 150 mg & IVIg treatments. Next scan late Nov. Overall, we are pleased.

My best wishes to everyone.

Jane E.

Reply # - September 9, 2013, 07:09 PM

Dr West
Posts: 4735

Sounds great. It's terrific when the leading problem on the scan following advanced cancer is a gallstone. :wink:

-Dr. West

Reply # - December 16, 2013, 06:41 AM

poppyjo
Posts: 33

Just a quick note on my last scan on 11/25/13. Scan is stable. My oncologist said if not for the malignant pleural effusion from 12/11 he would say I was in remission. Although, he did say "you can't be cured, only treated". I believe he is surprised at how well I am doing as he said 2 years ago after my thoracotomy I was so pale and frail, he had some doubts. I've been extremely lucky as my weight stays around 103 lbs, throughtout this whole ordeal and I feel strong and healthy, considering my stage 4 cancer diagnosis. My oncologist also feels my IVIg (immune treatments) every 4 weeks are helping my body fight the cancer. Next scan late March 2014.

As always, I send many well wishes to all of you.

Merry Christmas!

Jane

Reply # - December 16, 2013, 03:17 PM

Dr West
Posts: 4735

Jane,

That's really wonderful. I'm very happy you got an early Christmas gift. I hope you aren't put off by the statement about you not being cured...you're still stable and with almost no evidence of disease for years -- that's the next best thing.

Please keep the updates coming, especially when they're so uplifting.

-Dr. West

Reply # - June 27, 2014, 05:27 PM

poppyjo
Posts: 33

Just a quick update to let you know my lung scan of 6/16 remains stable. I have been having some issues with my left hand/fingers cramping and muscles stiffening the last 3 weeks. So, my oncologist recommended an MRI of my brain to rule out brain mets. I'm scheduled on July 9th. This is my 2nd brain MRI, the last one was 12/28/11 which was clean. I'll continue the Tarceva 150. She is also monitoring my bilirubin numbers as they have been going up each time my blood is checked since I have been on Tarceva (started 2/24/12). More later.

As always, I'm sending many well wishes to all of you.

Jane

Reply # - June 27, 2014, 08:23 PM

Dr West
Posts: 4735

That's really good to hear, at least as far as your scans go thus far. Good luck with your upcoming MRI.

I suspect you're keeping up with the developments on new agents for patients with acquired resistance to EGFR TKIs like Tarceva (note our upcoming, star-studded patient forum on acquired resistance in Boston in early Sept -- registration costs go up in a few days). For the first time, we have several very promising leads that have clear activity for many patients with acquired resistance, though I hope you continue to not need them for a very long time!

-Dr. West

Reply # - July 26, 2014, 05:20 AM

poppyjo
Posts: 33

I saw my oncologist n Friday, the 25th to review the Brain MRI I had on 7/9. The scan showed no evidence of metastasis. I was relieved. I'm still having the cramping/stiffness in my left hand and we will just monitor it and see if it gets worse. She suggested a neurologist and I declined. She said my blood work didn't show any problem areas. Everything else with me is about the same I feel okay except for nausea which is being managed.

That's all for now. Just wanted to check in.

Take care,
Jane

Reply # - July 26, 2014, 07:24 AM

JimC
Posts: 2753

Hi Jane,

Thanks for the update, and congratulations on the great scan results! Keep those good updates coming!

JimC
Forum moderator

Reply # - September 19, 2014, 02:53 PM

poppyjo
Posts: 33

The latest scan news of 9/12/14: Some areas in my left lung show an increase in nodular densities (tree-in-bud) and there are some in the right lung. The left lung has an area that is big enough to do a biopsy. Since I still have the lung infection from Nov. 2008 the spot that has grown could be the infection or could be progression. So, I will see a pulmonologist for a consultation and a biopsy. To top things off, I have the start of shingles (yikes). My oncologist started me on an antibiotic and I will stay on Tarceva till I get the biopsy done...then a possibly a new treatment plan. I'm strong and will handle all that comes my way. More later. Take care. Jane

Reply # - September 19, 2014, 04:38 PM

Dr West
Posts: 4735

It sound like these changes are pretty subtle. Accordingly, I think it makes very good sense to continue Tarceva, not over-react, and to not necessarily make any changes even if progression is confirmed, if that progression is very indolent.

-Dr. West

Reply # - October 24, 2014, 07:19 AM

poppyjo
Posts: 33

10/24/14 I haven't updated since my navigational bronchoscopy done on 10/1. My lung collapsed after the procedure so I spent 3 days in the hospital. Lung collapsed again after I was taken off suction. Two biopsies were done on my LUL and both showed no new malignancy (yay). Several cultures were done and some are pending. One showed Aspergillus, another showed Beta-Lactamase Haemophilus parainfluenzae, and the one still pending is Acid Fast Bacilli which is still pending (probably MAC). I am being referred to infectious disease. Also, have a rash (stomach area and butt) not 100% sure it is the Tarceva rash. I am on antibiotics for a month but rash hasn't gone away. My oncologist wants to do a biopsy of the rash to make sure it is from Tarceva or if it is some other bacteria growth. Initially, she said it was shingles.

I finally had toenail surgery for my ingrown toenails to remove the lateral nail beds. I am so glad I had the procedure done.

Thinking of all of you and wishing you the best.

Jane

Reply # - October 24, 2014, 07:27 AM

JimC
Posts: 2753

Hi Jane,

Wow, that's a lot going on at once, and I'm sorry you have to deal with it all. Of course it's great news that the biopsy was negative for new malignancy, and I hope that Tarceva continues to work for you for a long time. In the meantime, I'm also hoping that these other problems will clear up soon.

Thanks for providing the update; we always like to hear from our GRACE family.

JimC
Forum moderator

Reply # - October 24, 2014, 04:59 PM

Dr West
Posts: 4735

Jane,

I'm so sorry. As I was reading the first half of what you wrote, I was thinking "I hope she has a good infectious disease doc"...and then I felt that the ID doc could also potentially be helpful about the rash. I found myself thinking about shingles (which should be on ONE SIDE and is almost always limited to one stripe of rash (the distribution of a nerve affected by the virus), not in a couple of areas and not both sides of the body. But that also sounds strange for a pattern for Tarceva. I hope you get some answers and effective treatments as needed.

Please keep us posted.

-Dr. West

Reply # - October 24, 2014, 05:36 PM

double trouble
Posts: 573

Hi Jane. I'm so sorry to hear that you are still battling lung infection after all this time. Mine seemed to clear up after I got moved out of the apartment that I suspected was harboring something perhaps in the HVAC system. I hate hearing you're positive for aspergillus, as I think I remember reading that the treatment can be quite challenging. Please be aware that I have followed your posts and that you are always in my thoughts. I'm hoping things will take a better turn for you soon.

Much love and respect,
Debra

Reply # - December 12, 2014, 04:18 PM

poppyjo
Posts: 33

12/12/14 update: I saw my oncologist today and my last scan shows more changes from scan to scan. I have the MAC/MAI infection so the question is what is going on. I will be scheduled for a needle biopsy to determine what it is. The rash I have is from Tarceva. I had 4 biopsies done on 12/1 and this confirmed the source. The biopsies are not healing well and one might be starting an infection. I go back on the antibiotic that unfortunately makes me ill most of the time to help get the rash under control. I may be taking a break from Tarceva if things don't improve. The rash is almost everywhere but my face, scalp, and feet.

In addition, my hubby was just diagnosed with an aggressive form of non-hodgkins lymphoma. Life is hard for us right now. Hope things get better.

That's all for now.

Jane

Reply # - December 12, 2014, 07:48 PM

Dr West
Posts: 4735

I'm so sorry for your ongoing misadventures with that infection, though glad you do so well with Tarceva. I'm sure you're keeping up with the developments for EGFR mutation-positive patients who develop acquired resistance after a period of good response.

I'm also very saddened to hear of your husband's diagnosis, though there are many potentially effective treatments for lymphoma, an area in which there has been astonishing progress in the last 10 years. I hope he does well.

PLEASE do come back to keep us informed. I'm sure I'm not the only one who missed hearing from you.

Good luck.

-Dr. West

Reply # - December 13, 2014, 11:03 AM

catdander
Posts:

HI Jane, I'm very glad to hear from you.

So sorry to know you're dealing with such difficult news. I hope you and your husband have others to help support you both through what I hope is just an awful bump in the road.

I wonder if you've tried lowing your tarceva dose to let your skin have a rest. Dr. Weiss stated in a previous thread, "If this is the case, it may be worth noting that patients with EGFR mutation can often have good disease control with much lower doses than the standard 150mg of tarceva, with less side effects, diarrhea included." http://cancergrace.org/lung/topic/tarceva-and-gi-complications/ and Dr. West's blob post, http://cancergrace.org/lung/2010/05/24/dose-vs-efficacyof-egfr-tki/

Keeping you and your husband in my thoughts,
Janine

Reply # - December 13, 2014, 02:17 PM

poppyjo
Posts: 33

Hi Catdander My oncologist said she would consider stopping Tarceva for a week or possibly taking the pill every other day. She put me back on doxycyclyine hyclate 100 Mg 2x a day for 2 weeks, then 1 a day for an extended period. I've been on this antibiotic off and on since Sept. and I have a difficult time tolerating it (nausea and vomiting). I agreed to try it again. I see the dermatologist on Monday. His nurse called to tell me he wants to discuss some options about the rash. He did prescribe a sulfur cleanser which I tried and seems to help some but I have so much rash it is difficult to use.

My husband and I moved back to Florida in June of this year to The Villages. The only family here is a 94 year old aunt. My brother, who lives in Ohio, is concerned about us and will come stay with us if both of us are ill at the same time. We have a great support circle from our neighbors, too. I'm not worried at this point.

Both my oncologist and my husband's oncologist are aware of what we are facing and will support us. It is good they know each other.

Thanks for responding and suggesting a break with the Tarceva.

Jane

Reply # - December 13, 2014, 05:52 PM

cards7up
Posts: 636

Hi Jane, I've been a LC patient and visitor to GRACE for over 5 years. I've just seen your posts for the first time and went back and read this one from the beginning. I just want to say that you have a great attitude for all you've been through and are still going through yourself and with your husband's diagnosis. I see you move to FL back in June and we know how hot it can get there. Do you avoid the sun or cover up well when you have to be outside? This is recommended while taking Tarceva. Sunscreen and lotions should be alcohol free. I wish you the best in finding a solution to the never ending rash. Take care, Judy

Reply # - December 13, 2014, 08:38 PM

sherrys
Posts: 212

Jane, I'm so sorry to hear of your husband's diagnosis. I wanted to tell you that I am one of the people who can't tolerate high doses of Tarceva. I had to keep reducing my dosage until I reached 25 mg, which I have been on for almost 2 years. I did have a brain met in November, but no other disease shows anywhere else in my body. I feel like my brain is kind of out there on it's own since Tarceva doesn't cross the BBB, so it really wasn't a surprise. But my point is that I have done very well on a very low dose. Good luck!!

Reply # - December 14, 2014, 06:35 AM

poppyjo
Posts: 33

cards7up Thank you for reminding me how important it is to shield myself from the sun. I'm careful but will make sure I remember to lotion up.

Sherry, My oncologist and I were both surprised why I got the rash so far in treatment as I have been on 150 MG since 2/12. I am open to a lower dosage but it hasn't been discussed yet. I know my oncologist is concerned about the last 2 scans I have had but it is difficult with this lung infection as the nodules can be either infection or progression. Last biopsy was in the left lung and it wasn't a new progression. It appears to be several strains of infection and the MAC/MAI. This last scan scared her as the radiologist told her there was so many spots he just couldn't report on all of them. The radiologist did point out a few that showed growth in the lower right lung so she is focused on scheduling a needle biopsy on one of the nodules to get a determination. Overall, the radiologist said my condition is worse (whatever that really means). After the biopsy, we will know more and can discuss the next steps. I'm glad you are doing so well on the lower dosage.

I see the dermatologist on this Monday and he wants to discuss several options regarding the rash. I will consult with my oncologist before I agree to whatever he has in mind.

Thanks for responding and helping me. We are keeping positive with everything that is happening with my husband. We will get through these challenges and that is a promise.

Take care and I will keep you my GRACE family informed on the next steps.

Jane

Reply # - January 9, 2015, 07:01 AM

poppyjo
Posts: 33

I had the RLL needle biopsy on 12/29/14 and saw my oncologist for a consult. The biopsy showed no malignant cells and nothing else (not even a hint of the MAC in the areas that were targeted). My tarceva rash is under control now with an oral antibiotic, the sulfur cleanser and a topical cream. The dermatologist said not to change the Tarceva dosage as he can help me manage the side effects from the rash. So, things are better. My oncologist said she can't rule out future lung biopsies, as she needs to know what is going on in my lungs. I'm in agreement with her.

On a 2nd note, hubby had his first chemo (R-CHOP) and did real good. Some pain from the Neulasta shot but it is manageable.

As always, take care and thanks for caring.

Jane

Reply # - January 9, 2015, 09:21 AM

JimC
Posts: 2753

Hi Jane,

Thanks for the positive update...we always like hearing good news from members of our GRACE family. Our best to both of you for continued good results.

JimC
Forum moderator

Reply # - January 9, 2015, 08:44 PM

Dr West
Posts: 4735

That's a great relief! I'm very happy, had been saddened to learn of the frustrating course you'd had recently. Here's to better days!

-Dr. West

Reply # - March 11, 2015, 03:43 PM

poppyjo
Posts: 33

My latest ct-scan report of 3/2/15 shows (the usual) some new nodules and some improved nodules. Same story...can't tell if they are progression or MAC/MAI infection. My oncologist will consult with my infectious disease doctor as she wants me to start a treatment plan for the lung infection. I've been on that treatment plan before for 18 months of very strong antibiotics, and many sick feeling days. I'm not looking forward to it but will do my best. One good thing my scalp infection is gone now. The dermatologist said thinks it was caused by Tarceva. I was put on another antibiotic for 10 days and it also cleared up the drug rash...so things are good. I'm still puzzled as to what happened to my scalp, as it wasn't a rash...it had hard clumps of "something, (more like hard rocks to me)" near the hair follicle that eventually dried up. If I massaged or rubbed them, they would disintegrate. Very strange, I had about 30 or 40 of these clumps and they were where my hair was so kinky and curly from the Tarceva. I never had curly hair till I started Tarceva. My dermatologist said to have patience and things will work themselves out. Hope, this problem stays away for ever.

Well, next scan in 3 months. And, stay on Tarceva 150.

Best wishes to everyone.

Jane

Reply # - March 11, 2015, 06:25 PM

catdander
Posts:

Hi Jane, It's great to hear you are stable and so so good that the rashes are gone. Wouldn't it be nice to not have an infection to deal with? I hope you're able to feel well.

Lots of Luck,
Janine

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