My cancer is progressing

[Tylalla]

Here is what went on at my appointment today. The Dr reviewed my CT and it showed that the lung spots and lymph nodes haven't changed. That was the good news. The bad news is that the tumor on the kidney is bigger, the hip bone damage has increased and it appears that the tumor has started eating in to the muscle, which most lo likely explains the severe pain I have been having in my hip and tailbone. The damage to my spine explains the terrible nerve pain I have in my right leg. I'm going to get some palliative radiation done on my hip to hopefully help with the pain.

Because the cancer shows progression, I have been taken off the Keytruda immunotherapy. We are now in the process of trying to get me accepted in to a clinical trial. I'm going to have to have another biopsy so more gene testing can be done, and it will be at least a few weeks before I will know if I am accepted or not. If I'm not accepted, there is still a regular chemotherapy drug I can try. I'm going to hope for the trial. I think it gives me more hope and options.

Sent from my SAMSUNG-SM-G890A using Tapatalk

[Tom Galli]

Michelle,

Certainly, yours was not the best of oncology consults.  Palliative radiation should help with the pain.  Ask your doc if you need Zometa that is normally given to those with significant metastasis in bone.  It is supposed to harden bones to damage cancer causes so you don't break your hip after the palliative radiation relives your pain.

The progression is not good news.  I remember many of those bad news consultations.  In 2005, not many new drugs were available and the old standard Taxol and Carboplatin was my only choice.  It was having a good effect but not a lasting effect.  It would knock the tumors down but they'd return again but my doctor was considering administering Taxol and Carboplatin as if I had a chronic condition.  It is interesting because I note there was no progression of your lung spots and lymph nodes.  So, something worked on them.

Let us know about the trial when you get details.  You are in Ohio and there are a number of well respected clinics in that state.

Stay the course.

Tom

[Tylalla]

Hi Tom

Thank you for the information on Zometa and I will write that down to ask about. I was getting Xgevia at the last clinic I was going to, but this center won't give that without clearance from a dentist and I cant afford that right now since i need a tooth pulled and some other work done.

I'm now going to Ohio State University Comprehensive Cancer Center- James Solove Research Institute (OSUCCC-James) It's a 3 1/2 hour drive one way for me, but I feel it's worth it. They are doing the Match trial there, and I'm really hoping I can qualify.

I do agree with you that it's interesting that the lung spots and lymph nodes have stayed the same. I'm wondering if they might be a different type of lung cancer than what metastasized to the kidney and bone. I did have 2 different types of lung cancer. The first diagnosis, which was taken care of with chemo and radiation, and several months later a secondary type of lung cancer tumor that showed up in my other lung and was surgically removed via a vats wedge resection. After that is when I was NED for 7 months. I had biopsies of the bone and kidney tumors and they were of the type of my first diagnosis. The lung spots have not been biopsied. It's something I may discuss further with my doctor.

Blessings to you,
Michelle


Sent from my SAMSUNG-SM-G890A using Tapatalk

[LindaD]

HI Michelle,

I was diagnosed with Left side Breast Cancer 2A in Oct 2015, during radiation treatments found something suspicious on my right lung (never drink or smoke), after PET/CT scan, it was confirmed Lung Cancer NSCLC stage 3, had lobectomy in March 2016, chemo and radiation at the same times in April and May.  In Oct 2016 bone biopsy confirmed Lung Cancer metastatic to bone. Started Iressa on top of Tamoxifen in Nov. 2016.  started Zometa in March this month, I didn't know about Xgevia, but it seems it's better outcome than Zometa when I did some web search.  With the first Zometa treatment, I was very tired, and had flu like symptoms.  On my last CT scan, there were small spot(s) on my kidneys, but we're not sure what it's. I pray for the Negative results.  Will see in next CT or Pet scan as we're waiting to see if Iressa and Zometa helps. 

Best.

Linda.

[MaryTD777]

Hugs & prayers for the best trial available!

Having multiple types of cancer to fight must be hard on you. This part improving but this part growing would have had me going through many extras boxes of kleenex. I am glad you are able to forge ahead so well. There must be many prayers out there for you, pushing you onward & upward
[emoji5]
Please remember you can come here for anything. Basically conversation, prayers, hollering... you name it!

Take care,
Mary

Sent from my SM-N920V using Tapatalk

[LindaD]

Hi Mary, thank you for your support. Yes, I am glad I found Lungevity which I can get support, information and someone in similar situations that really understands what is going on with cancers to chat to. Thank you for the prayers. Love[emoji4]. Linda


Sent from my iPhone using Tapatalk

[Tom Galli]

Linda,

I just noticed your post.  Do I understand you had a recurrence after surgery?  So, breast cancer and lung cancer and a recurrence after surgery.  Wow, and I thought I had a hard row to hoe!

I've not had bone mets but know many that did.  Zometa has been reported as hard to tolerate but I've heard good reports about it hardening the bones against the spread of cancer.  Have you been on Iressa and Tamoxifen since November?  I've heard good things about the former but don't know anything about Tamoxifen because it is normally associated with breast cancer.  Iressa has been very effective with some adenocarcinoma tumors that display EGFR genetic mutations.  I hope yours responds.

Spots on the kidneys and hypo-dense cysts in the liver had been finds that show up on my CT scan.  I had a new radiologist check my scan last year and I guess he didn't read through my history because his report scared us to death.  I had spots on the kidney and hypo-dense cysts in the liver also but they were present without substantial change from my first CT.  They were sometimes reported as larger and then smaller but my oncologist told me it was nothing to worry about.  I hope that is the case for you.

There is no secret sauce to lung cancer treatment.  One must persist to prevail but the result is worth it.  I'm a month past 13-years as a survivor and if I can live, so can you.

Stay the course.

Tom

[LindaD]

Hi Tom, thank you for your respond. I was being treated for breast cancer and found lung cancer while I had radiation treatment for breast cancer detected by CT scan in 2015, had Lobectomy for upper right lung in early 2016, followed by chemo and radiation. started Tamoxifen in April last yr. I was procrastinating for another CT scan with fears till September last yr, found lung cancer metastatic to lower back bone. Confirmed by bone biopsy in November last yr, my oncologist started Iressa on me, unfortunately I can't find much discussion regarding Iressa in here. (I learned this is a very early version of lung cancer drug which was stopped by FDA and now back again) I have very dry skin and fatigue, cramps as result of Iressa perhaps from Tamoxifen too. My oncologist recommended Zometa to strengthen my bones and hopefully to prevent more bone meet. Do you know if PET scan clearer than CT scan ? as I have been having CT scans with contrast and the results are not so clear but definitely freak me out!! My oncologist suggested CT so we can compare the results. Don't know if we can compare PET scan with CT scan.
I try to stay positive, it is super difficult to deal with the tests and trying to figure out results.
Take care
Linda


Sent from my iPhone using Tapatalk

[Tom Galli]

Linda,

OK, so let's take your questions one at a time.  On Iressa, start your reading here, then here, then some general background information on adenocarcinoma here. 

On PET scans, they measure the level of metastatic activity.  So a PET reveals if cancer is present; a CT shows the size and shape of the tumor or tumors.  Fortunately, there is a combination PET-CT scan (and you've had one) that is now in use and that would answer both the metastatic and tumor size, shape and location with precision.  Perhaps you might ask your doctor for a combination scan because of your concern about kidney spots.  Here is more information on imaging.  I've had a number of combination PET-CT scans and they were very helpful for questionable spots.  Sometimes doctors are reluctant to order PET scans after surgery because inflamed tissue can masquerade as metastatic activity.  I've had that problem also.

You've had breast cancer and I've read about it but the vocabulary and terminology is vastly different. So take some time to read into lung cancer.  Moreover, from your continuation on Tamoxifen suggests your doctor may be concerned about residual or metastatic breast cancer.  Clearly the tissue from your lobectomy revealed lung cancer by pathology examination but one never knows, so it is good your doc is being cautious.

You will likely have more questions and this is a good place to tee them up.

Stay the course.

Tom