Below are some email updates I (Erin) sent out over the past 8 months. I’m including these just so you can get caught up on where we are at now. For the first couple months, we didn’t do the email updates so I’ll recap here:
February: She was diagnosed with Stage 1 in February of 2014. They saw a small spot on her right lung, they were not overly concerned about, and a small spot on her lymph nodes. In March, we found a surgeon at the University of Miami that we really liked and the surgery was scheduled for April.
April: She went in for a wedge resection at the surgery center at the University of Miami. The surgeon wanted to check out the spots they saw on the lymph nodes before going onto the resection to make sure the cancer hadn’t spread. Because he found some spots on the nodes, he couldn’t do the resection and it meant that the cancer was actually stage 3. Which also meant that she would have a different kind of chemo and no radiation.
May: Right before chemo started, a new PET scan showed an additional spot in her hip, which moved her to Stage 4 cancer. She went to Tampa for a second opinion.
May 23
Hey all,
Well, I wish I had better news to report. My mom went to the Moffitt Cancer Center in Tampa today to get a second opinion. It’s a really great cancer center in the top 20 in the country. The oncologist there took a look at all the data, all the scans, blood work, MRIs, etc and said that the cancer had indeed spread to her hip bone and she does have Stage 4 cancer. He said the course of treatment prescribed by her oncologist in Miami was exactly right. The only addition he made was offering her a clinical trial they have at Tampa that is in the last phase of the trial. I don’t know what the drug is yet, she’s going to send me the name, but she has to decide by Tuesday if she wants to go with the clinical trial at Tampa – which, incidentally, she will get either chemo or the new drug – or stick with the chemo at Miami. It will be a gentler form of chemo aimed at controlling the spread of the cancer and reducing symptoms. She will probably not lose her hair or have nausea. (Thank you though to all of you who sent the chemo caps and ginger candies! We are going to share some of them with another person we know who recently got diagnosed with stage 3 cancer and is going to be starting chemo + radiation soon. So they will not go unused.)
So there you have it. That’s where we are at. I don’t think there is any other big news we could get after this (knock on wood). She is trying to stay strong and positive about it, though, obviously, it is a process. She’s working hard at it. If you’ve reached out to her and she hasn’t gotten back to you, please know that it has really meant a lot to her. I think she is overwhelmed (in a good way) by the amount of love and support she has received from everyone. And she plans on getting back to everyone soon.
Despite what the statistics say, you never really know what is going to happen. I may use statistics for a living, but at the end of the day they are an average of the population and each individual has their own unique experiences.
I’ll keep you updated whenever there is more to report.
Love to you all!
July 15
Hey Everyone –
Another update for you all.
Yesterday my mom went for her third chemo treatment. Her blood work came back a-ok so she was able to get the treatment. She has them every 3 weeks so her next round will be August 4 and then August 25. If you all want to mark your calendars and send a little message of encouragement/positivity the day before/morning of, I know she loves to read your emails. I think it’s really nice for her to have the encouragement and to remember all the people who care about her while she’s sitting in the chair. The side effects from the chemo haven’t been too too bad. Because they are the lower intensity she hasn’t had a whole lot of issues. She usually feels super tired and nauseous (or is it nauseated…?) starting a couple days after treatment and lasting for about 3-4 days. Then she gets her energy and appetite back. She’s still trying to stick to a cancer/chemo friendly diet with little to no sugar and is exploring the world of juicing and healthy foods (like tofu!).
The real bit of news is not awful, but not great. She had a PET scan last Thursday to check the progress of the tumors and got the results yesterday. If you remember, she has the tumor in her left lung, which started at 2.3cm in Feb and increased to (I think) 3.7cm by April. She also has a small spot in her right lung and a spot in her left hip. The doctors were hoping that the chemo would have reduced some of these tumors by now. Unfortunately, none of the tumors have decreased in size. The spots on her hip and right lung are the same size and the spot on her left lung increased to 3.9cm. So, clearly, not what we were hoping for, but at least the two smaller spots have not grown and the growth of the original is slowed. The next steps, as I understand them, are to get her on a clinical trial. The doctors want to do 2 more treatments with these meds to see if they kick in better. But ultimately, she will probably end up on a clinical trial. It is randomized, so there is no guarantee that she will get the new drug, but it’s worth a shot.
I haven’t gotten all the details from my mom yet, but this is the gist of it.
I have to thank you all again for all your love and support. We are so lucky to have such an amazing group of friends and family.
Love you all
August 25
Hi All –
Well we have some Good News finally! My mom had another PET scan this past Thursday and had a meeting with her doctor this morning. He told her that all 3 spots (her left lung, her right lung, and her hip) had actually shrunk! I don’t have a lot of information at the moment other than that, but what this means is that the chemo she is on is doing its job. So she is having a chemo treatment now and will have another September 15th. We’re all pretty excited about it. 🙂
Thanks again for all your support and help. Hopefully this is the beginning of a new trend.
If you want to send an email, her email is [email protected].
Love,
September 15
Hi everyone,
Another update for you. A few weeks ago, my mom got some kind of infection/virus. She was put on antibiotics, which she finished, and was feeling somewhat better butnot 100%. Apparently the infection wasn’t completely gone because last Monday she was having some trouble speaking and just overall fatigue and then last Thursday she went to the ER with shortness of breath. They did an X-Ray and some bloodwork and she was given a ZPack. They showed she still had an infection and was also anemic. This morning she and Ramon went down to Deerfield for another chemo treatment. However, the X-Rays and the results from some blood work show that the tumors may in fact be growing. Below is from a chat my mom sent this AM.
“The CEA marker which is a blood test that tells about tumor growth says mine is growing despite the appearance of a decrease in size. Chemo is being postponed for a week due to my using an antibiotic and low blood counts. Dr. Jahanzeb has ordered a CT scan with contrast to see if the lymph gland is pushing on my vocal chords. If so, I ‘ll be referred to Dr. Rosow. Who will inject (while I am awake) a small amount of Teflon so I can speak normally. In addition, the type of chemo will probably be changed since this one isn’t working. Clin Trial is for Taxotere and Ganetsepib heat shock protein VHSP -90. Assignment is random with half being just Taxotere, I think, and Half getting both drugs.”
So basically, results after the 2nd treatment showed a little growth of the tumors and after the 3rd treatment showed a little reduction; but these other results and her symptoms indicate some growth. She already had the CT scan this morning and is on her way home. I imagine we’ll get the results sometime in the next day or two and we’ll go from there.
Hope you all are doing well and are enjoying the fall and cooler temps.
Love
October 9
Hi everyone,
Another update for you all. The last update we found out that the tumors, despite earlier signs of reduction, were indeed growing. My mom stopped the chemo treatment she was on and they were looking into a clinical trial. At the same time, she was experiencing pain on her left side (her head, neck, and shoulder) and also had trouble speaking. They thought this was due to an infection and she went through two rounds of antibiotics. So I’ll just go through a little sequentially what has been going on the last couple weeks.
The pain she was/is experiencing is not due to an infection and they are still unclear on what is causing it. She saw an ENT specialist last week and he said she was experiencing vocal cord paresis (http://www.entnet.org/
So what does this mean going forward? A couple things:
1. Clinical Trial: She is no longer eligible for the clinical trial.
2. Chemotherapy: She will start another chemo treatment next Wednesday. The drug is called Gemzar. The treatments will be two weeks on, two weeks off, two weeks on, two weeks off, and so forth. I’m not sure what the side effects of this treatment will be. It looks like she may lose her hair and have some nausea.
3. Radiation: She is meeting with a radiation oncologist and a neurologist today to discuss cyberknife radiation to the spot on her brain. There have been some good results with this and it’s really lucky that they caught the growth so soon. Hopefully with radiation they can stop the growth and reduce the size of this tumor. If she wasn’t having the pain, they probably wouldn’t have done a scan of her brain. She will start radiation next Tuesday or Thursday.
4. Further tests: she will be getting another PET/CT scan this Friday and then she’ll have to have another MRI next Monday. Apparently they didn’t get to the cervical spine which they were supposed to do. They are still not sure what is causing the pain on her left side, so they need to figure that out.
5. Work/School: As of yesterday (10/8) she will not be going back to work. Between all the tests, doctors appointments, chemo, radiation, and honestly her physical condition, its just better at this point for her to not be working. She will be taking days from the unions sick bank, then will go on short term then long term disability. This was a really hard decision for her. She loves her students and she gets so much joy from teaching. But she recognizes that she needs to take care of her body and work is just too tiring at this point.
How is she doing? She is in some pain and is pretty tired. Of course the news is scary and she is trying to process it. She has lost some weight because of reduced appetite (and maybe cutting out sugar), so we are trying to figure that out too. Her doctors don’t want her to lose any more weight.
So that’s the update. Not so fun. I think I may switch over to a blog style updates partially to make it a bit easier for me and also so you all can share with others and maybe everyone can post comments, share pictures, etc that we can share with my mom.
It’s a tough unknown path ahead that we are all trying to navigate as best we can. It means a lot to know that our family and friends are there for the love and support. “One day at a time”
Love you all very much,
October 15
Hi all,
Just a quick note to ask for some positive energies and prayers and whatever you have to give.
Today at 1pm she will have cyberknife radiation on the spot on her brain (http://www.cyberknife.com/
Tomorrow morning she will have chemo.
I’ll send a note when we hear more.
Love to all,
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