Newly diagnosed

[Murphette214]

Hi,

I'm Murphette214. I was diagnosed with Stage IV adenocarcinima that has spread to all my lymph nodes, spine, bones stomach lining, abdomen, pelvis, and ovaries. I was diagnosed in May 22, 2018. This has, understandably, come as a shock to my husband and I as I have always been healthy. We've had very little time to absorb all the information thrown at us in a very short time. In addition to the day to day effects of the cancer itself.

I'm told by the Oncologist that she has never seen a cancer this aggressive. Lucky me! I had my annual physical on April 20th and there was nothing to indicate any problems. In late April, I developed a small ache in my left buttock which I attributed to a muscle strain from yoga. Things quickly spiralled out of control over the next 4 weeks leading up to my diagnosis. How do you go from being a relatively healthy 53 year old woman to facing death in such a short time? 

I found this support group and thought I'd give it a try. 

Thank you.

[Judy M.]

Hello Murphette

Sorry to hear you are facing this, but glad to have you here. This is a very supportive support group in my experience. I also have stage IV Adenocarcinoma. All of us are pretty much in shock when we get our diagnosis. I think because lung cancer often has so few symptoms. Which is also the reason many of us aren't diagnosed until stage IV. And we all have way too much information thrown at us at once. We're in shock from the diagnosis and trying to absorb that at the same time we're hit with an avalanche of info. There's a place on this site titled 'lung cancer 101' that will help you as far as information goes. I'm sure another member will soon place a link here for you to reach it. I'm not techie enough or I'd do that for you. Plus, if you have any questions you're in the right place to ask them. We aren't doctors, but we have a wealth of first hand experience we' re happy to share. It's good to take someone with you for doctor's visits to help you remember things. And what I found even more helpful early on was having a good recording app on my phone and recording my doctor visits. I could listen later and also send it out to my immediate family who, of course, always want to know what the doctor said. Hang in there. 

Judy M. 

[LexieCat]

Hi, Murphette, and welcome.  I'm so sorry you're having to deal with all this.  As Judy mentioned, one of the reasons lung cancer is too often diagnosed at such an advanced stage is that there often are no symptoms until then.  It seems probable your cancer was already well advanced when you went for your physical in April.  Unless the doctors have reason to be looking for lung cancer, the tests and exams performed at regular checkups often aren't sensitive enough to reveal it.  I was fortunate enough to have my cancer discovered at an early stage because I was in a lung cancer screening program due to my smoking history.  If it weren't for that, there's a good chance mine would have been well advanced before I ever knew about it.

I'm glad you found us.  This is a great bunch of people, and you will find lots of support.  I can't offer much in the way of insight about the treatments you might receive, except to suggest that you connect with a cancer center that specializes in lung cancer and offers clinical trials, etc.  I'm not sure where in Texas you are, but the MD Anderson Cancer Center in Houston is often listed as the number-one hospital for cancer care.  I was treated at a local MD Anderson Center near Philadelphia (Camden, NJ) and I have been VERY impressed with the way I've been treated, including multidisciplinary teams, etc.

[Susan Cornett]

Hi, Murphette.  That is a lot to have thrown at you all at once.  Everything about this stupid disease stinks.  Are your doctors providing treatment to relieve the cancer symptoms? 

Let us know how we can help you and your family.  This diagnosis affects everyone.  

[Tom Galli]

Murphette,

Welcome here.

Obviously, your diagnosis is a tough one to swallow.

Are you in treatment? You've had a biopsy because your report adenocarcinoma but has your biopsy been tested for tumor markers? If so, what tumor markers are present? Has your oncologist mentioned targeted therapy or immunotherapy?

Answers to these questions may help those of us who are in the same diagnostic boat as you provide information on their treatment experience.  Also Terry's suggestion of seeking treatment at a cancer research establishment is a good one.

Stay the course.

Tom

[BridgetO]

Hello Murphette and welcome. You're really dealing with a lot! I'm so sorry you're going through this. . Like LexieCat, I was fortunate to be diagnosed early. My lung nodule was found in a routine CT scan to surveille for metastasis from a different earlier cancer. Because lung cancer typically has no symptoms until it is fairly advanced, diagnosis at state 4 is, unfortunately, all too common. There are a lot of new treatments available as well as clinical trials that are helping people live longer and better. I hope you're connected with a major cancer center and a lung cancer specialist. 

Here's a link to Lung Cancer 101 that Judy referred to. https://lungevity.org/for-patients-caregivers/lung-cancer-101.

Please let us know if you have specific questions and also how else we can support you.

I see that Tom Galli has just nowreplied to your post. I haven't read Tom's post yet, but I think you will find a source of hope in whatever he has to say. He's a long term survivor of Stage 4. 

Hang in there.

Bridget O

[CIndy0121]

Murphette,  Don’t talk about diagnosis in one sentence and facing death in the next. Yes, your cancer has spread to several distant sites. When you receive a systemic treatment, a drug that directly enters your system, it goes everywhere. I would not let the oncologist discourage you from deciding you want every possible option presented to you. What are your tumor markers?  Is there a spot that can be radiated? If you don’t have a mutation that has a targeted therapy, you should consider one of the most recently studied combinations of chemotherapy, immunotherapy, biological agents that are available, even if you have to enter a clinical trial. You would probably qualify because you have had no treatment yet and are young and in otherwise good health. Please don’t just assume a lot of these chemicals will be too toxic. Yes, they can cause slight to severe side effects, but they can also shrink tumors and kill cancer cells. If a treatment becomes too uncomfortable you always are the ultimate decision-maker and can always request trying something else. Take it one day at a time. Keep checking in here on the site with any new information you get or questions or concerns you have. We have all been through this and understand how especially overwhelming these early stages of diagnosis, staging and deciding on treatment are. Wishing you all the very best as you embark on what is honestly an unexpected and difficult disruption to everything and everyone in your life. 

Cindy

[Mamma Om]

Hi Murphette, so glad you reached out to the group. I am sorry about your extensive diagnosis, but do not be discouraged. You are young, otherwise healthy, and you have a husband to help you thru it. Be honest and open with every Dr. you see, keep detailed, written lists of dates, treatments, options. Using the phone to record conversations is a great option. Believe that you can beat this, because you can. I am a 4 times cancer survivor recently diagnosed with stage 2 small cell plus adenocarcinoma. But my tumors were found early due to frequent CT scans for cancer watch as well as COPD and asthma. Surgery in April removed my right lower lobe, but before I started chemo they changed my diagnosis of SCLC to carcinoid, but in fact, they are still testing the tumor and treatment is on hold. The other cancers I had were breast in 2001, other breast in 2012, thyroid in 2015, and now lung in 2018. I'm 74, single, and I'm have rheumatoid arthritis that affects my body many ways. Best wishes to you! 

[Elke]

Hi Murphette, welcome to this site.  I'm so sorry to hear about your diagnosis and understand what you and your family must be feeling. We have many similarities - I'm new to the site, 53 and healthy, live in Texas and diagnosed with advanced adenocarcinoma.  I was diagnosed in November 2017 and have been undergoing treatment every 3 weeks since Dec. 7.  I was on Alimta + Carboplatin + Keytruda for 6 cycles.  After that, my oncologist moved me onto Keytruda alone, which I'll get every three weeks until at least til the end of the year.  I share this with you because I feel it's helpful to know what type of treatments others with similar diagnoses are on.  My mid-year scan in May showed some improvement, so I'll take it!  I'll have another one at the end of the year.  As someone else mentioned, there have been many scientific advances made in the treatment of lung cancer which gives me so much hope!

[Murphette214]

Thanks everyone for the welcome to the forum and information. I've actually been in the hospital since Friday night and just got home today. The pain has been so horrendous I haven't had a chance to follow up on this forum or read much of the information provided. 

When I was diagnosed my oncologist told me surgery and radiation were not options as there was too much cancer in too many places. The plan was to start chemotherapy as soon as possible and start meds to relieve the pain. I started on 15 mg of morphine 2x a day, 300 mg of gabapentin 1x a day and 300 mg of hydrocodone every 4 hours as needed on May 22. I had my first chemo treatment on June 1st. I actually tolerated the chemo fairly well. It was carboplatin and taxol. I took all nausea meds prescribed and while I did have some nausea, I never actually got sick. Had some changes in the way food tastes. The bone pain continued to worsen and more nodules developed in various places on my body. I had xrays, CT scan and MRI's the following week because of new issues all of which showed disease progression. The cancer in my left shoulder had burrowed so deep that I lost most function in that arm. My lower back continued to be a major source of pain radiating down my left leg into my ankle and down my right leg into my knee. The hydrocodone was only working 2 hours before the pain would come roaring back.

I saw my oncologist on May 13th. She increased morphine to 30 mg 2x a day, and Gabapentin to 300 mg 2x a day. She said the chemo had not started working yet but that it might take a cycle or 2 before we would see if it was having any effect. In the meantime, she was testing the biopsy specimen with immunotherapies but so far all had returned showing they would not work for my type of cancer. She had one more test she was waiting on. Keytruda is not a viable option as I only have 1 kidney and it has been shown to increase kidney damage by 52%. So it's probably best not to use that. She did not discuss biomarkers. It's on my list to ask about next time. She still felt chemo was my best option at this time. My next one was scheduled for June 22nd. 

Friday June 15 was a bad day. I couldn't seem to get ahead of the pain. The hydrocodone pills were barely scratching the surface. At 9:30 I tried to lay down and it felt like my lower back was going to explode..literally! My legs ached, my back was excruciating, I could barely walk because it felt like my legs were caving in, and my chest hurt. We called the oncologist who sent me to the ER. 

The next 3 days are a blur of pain, zombeism and tests. They gave me 4 mg Dilaudid via IV which knocked me out for 3-4 hours but which did control the pain. They increased the morphine to 45 mg 3x a day, and 600 mg of Gabapentin 2x a day. By Monday the new dosages had stabilized the pain so I wasn't a zombie anymore. They started me on 4 mg of Dilaudid via pill instead of IV and as long as I took it the minute my lower back started to hurt, it kept the pain at a manageable level. Xrays, and full back MRI's came back showing enlargement of current tumor in the chest, new nodule development, increased bone degeneration of the left buttock, sacrum and lumbar spine. It also showed progression in more Thoracic and Cervical spine bones. However, there was no sign of spinal compression. Overall, everything was getting worse and nothing was showing improvement. They would have released me that day with the new pain meds/dosages that seemed to be controlling the pain except they saw something at the base of my brainstem on the cervical MRI and now wanted me to have a brain MRI. 

The brain MRI showed metastases to 2 areas of the brain. Near the brain stem at the back of my neck and on the left side of my brain. So now evidently everything changes. My next chemo cycle is cancelled and I have to have radiation on those 2 areas of my brain. If they can eradicate them, then I can have more Chemo for everything else. Obviously this is discouraging news. I had hoped to see the next chemo cycle working on the cancer I already have which seems to be advancing rapidly. I wasn't expecting to hear about new metastasis especially in my brain and that chemo would be stopped and radiation used instead on only those 2 spots. I guess that's why this is all so overwhelming and hard to gain an understanding of. Everytime I think we've got some type of control and a plan of action something else goes wonky. I'm still staying positive and hoping for the best quality of life I can get for as long as I can but each week brings more discouraging than encouraging news.

 

[Murphette214]

There are a lot of good cancer centers in Houston so I feel lucky that I am based here. I am currently with the Kelsey Seybold Cancer Center on Holcombe. They are affiliated with the CHI St. Lukes-Baylor Medical Center.

[BridgetO]

 I'm sorry to hear that you've been having such terrible pain. Know that we are all thinking of you and hang in there.

Bridget O

[Steff]

Murphette,

I am hoping that your new cocktail of pain meds can help you find some relief.  Everything (even tiny things) seems so much bigger and harder to deal with when you are in pain and cannot get decent rest.  As a caregiver, I think that one of mine and my mom's hardest thing to deal with is feeling the loss of control.  You mentioned that in your post - you feel like you get some control, have a plan, and then everything gets screwed up.  I'm a planner, my mom's a planner. When things don't go according to plan, we freak out.  It's really not good and after nearly 3 years, we still haven't found a way to truly accept the idea that we aren't in control.  The beginning of treatment was the worst - the unknowns, changes in treatment plans, my mom was hospitalized for a few weeks and had to pause treatment...it all wears on you.  I am so sorry you are having to deal with lung cancer and the pain that it is causing. both physically and emotionally.  I wish there were something I could say to help, but all I can say is that we are all here for you.  I have no advice except for taking things minute by minute, hour by hour.  Some days that's the best I can do and I'm not even the patient!  I commend you for reaching out for help when the pain was overwhelming and for reaching out to us.  I will be thinking of you today and hoping that today is a bit better than the last couple of days.

Take care,

Steff

[Tom Galli]

Murphette,

The suspension of chemo for precision radiation of brain mets should not affect the tumor control.  I was told there was a lengthy residual effect of infused chemotherapy and not to worry if a treatment was suspended.  I actually had a number of suspensions due to low blood counts and adverse side effects.  As soon as the radiation is complete, you'll quickly be scheduled for your next infusion.

I know what you are going through having fought end stage disease myself, but I lived and in fact have survived 14 years from a less than 6 months to live prognosis.  Hang in there and...

Stay the course.

Tom

[Laurel]

Murphette,

You are going through an ugly time. I am sending you soft hugs and fervent prayers.

[LexieCat]

Sounds like a pretty scary and unpleasant time you've had of it.  People DO come back from these kinds of situations, though.  As Tom noted, he's one of them.  Your doctors are prioritizing what needs to be addressed first.  There are strategies for addressing cases like yours, and this strategy involves radiation for the brain mets before going back to the chemo for the other sites.

Not that it's the same thing, but I train prosecutors how to try some of the most unpredictable kinds of cases there are.  One of the things I stress to them is the need to be flexible and ready to change tactics when the situation calls for it.  I think that's the kind of mindset that's helpful here--to simply try your best to be prepared for the unforeseen and a change in tactics as needed, rather than counting on treatment unfolding in a predictable fashion.  

We're all rooting for you--keep us posted!

Teri

[Murphette214]

Thanks everyone! New update. My Oncologist really wants to do another cycle of chemo before starting radiation. She's hopeful that will help arrest the spread of the cancer from my neck to my knees. So, the current plan is that I will do chemo this morning at 8 am as was originally scheduled. I will then go for a radiation consult this afternoon.

In 7 to 10 days after chemo, they want to do a series of radiation on my lower spine first to alleviate the pain there as it is the major source of breakthrough pain. They believe that should only take a few radiation treatments to accomplish. They will then move on to radiating rhe spots in my brain. They'll do new scans to check on how this is working before determining what course(s) of action to take next.

Thanks all for your support!

[LexieCat]

Sounds like you're learning to do "the flex"!  And it sounds like your docs are working hard to come up with the best strategy.

Best of luck--we'll be thinking of you!

[BridgetO]

Hi Murphette, 

My mom had metastatic breast cancer and radiation to her lower spine was very effective in relieving her pain. I hope the radiation works as well for you.

Bridget O