Jeff put together some info in several emails that described the situation.
The Bad News - April 13, 2007
Our Friends and Family,
Lauri and I returned to MD Anderson for our two year appointment this past Wednesday, April 11, hoping to be cleared of cancer for two years running. Instead, our Surgeon Oncologist greeted us with the news that Lauri's chest X-ray showed a "metastatic nodule" on her lung. They immediately scheduled us for a CT scan of Lauri's chest, to get a different, clearer view of the nodule and determine if this nodule was just a simple infection, or in fact cancer. The results of the CT scan were ready today (Friday, April 13).
The results of the CT scan showed multiple nodules on both lungs. Our Surgeon Oncologist has referred us to a Medical Oncologist at MD Anderson for chemotherapy treatment options. The appointment process should be complete by next Tuesday, and we expect to see the Medical Oncologist later next week. The chemotherapy is anticipated to begin as soon as possible. Following the chemotherapy, our doctor says that the nodules would then be surgically removed. I asked about the chances of beating this cancer using the plan laid out and she says that the outlook is good.
Obviously, we have many questions regarding the chemotherapy, and its effect on Lauri. We also don't know how many nodules are there, or how they will be removed. We will be talking to a nurse at MD Anderson, who herself has survived a rigorous round of chemotherapy, and now has children of her own. We will discuss with her different options to preserve Lauri's fertility, which is often an easy casualty of chemotherapy if left unprotected. The unfortunate irony of this situation is that if we had been cancer free after our two year appointment, then the doctors were going to give us the go ahead to begin having children. Now we are stuck fighting to save that option, no matter how far in the future it may be. We will fight, and not lose.
We are admittedly a wreck right now, but we are gathering ourselves for the long fight ahead. We have been down this road before, and we know what it takes to win. It is scary, because the cancer is now on a vital organ, but our resolve must be even stronger. Lauri and I will need your support, with prayers and smiles, during our fight. Thank you so much for being there for us, and we will keep you posted with news as it arrives.
From the Mauldin News Desk,
Jeff and Lauri
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First Appointment with the Medical Oncologist - April 17, 2007
Lauri and I had our appointment with the Medical Oncologist at MD Anderson's Sarcoma Center today. We expected this meeting to be very tough, based on previous experiences. Our doctor specializes in Sarcomas, and is very kind and patiently listens to all of our questions.
This email is VERY long, so here is a synopsis if you just want the high level stuff…There were a total of 3 nodules in Lauri's lungs, 2 in the right and 1 in the left. To treat these nodules, Lauri begin's chemotherapy on Tuesday, April 24. Each cycle of chemotherapy consists of 4 days of administering the drugs, followed by 17 days of rest, for a total of 21 days in a cycle. Lauri will undergo at least 6 to 8 cycles of chemotherapy before undergoing surgery to remove the nodules.
Details follow…
Our Medical Oncoloist reviewed with us the results of the CT scan taken last week. The scan shows three tumors in the lungs that must be removed. There are two tumors in Lauri's right lung, and one in the left. There are also "several" nodules of sizes less than 5 mm, but those would not be surgically removed at this point. It is anticipated that the chemotherapy treatment will kill the smaller tumors. It actually bodes well for us that the tumors were discovered 2 years after the removal of the first tumor. Our Medical Oncologist says that the longer the interval between occurrences, the better the chances of beating it. The long interval means the cancer took a while to get to the lungs, which makes it easier to chase down and fight.
The original pathology report described Lauri's sarcoma, removed from her leg, as a "spindled and epitheliod intermediate grade sarcoma with some features of sclerosing epitheliod sarcoma." Say that five times fast! The "spindled" and "epitheliod" words describe the shape of the cancer cells, which help identify the type of sarcoma. Our Medical Oncoloist spoke with the chairman of the sarcoma department and he said he has seen only one other patient with this type of cancer "signature". That patient was diagnosed with a "fibrosarcoma."
The chemotherapy treatment will be administered with the goal of shrinking the tumors. Once shrunk, the tumors will then be surgically removed. If the tumors are not shrinking as a result of the treatment, then the chemotherapy dosage, frequency, or type will be changed as appropriate to force the tumor to shrink. If the tumors are shrinking, then they are "responding to the treatment" and surgery would not be far away. Pray for them to shrink!
The chemotherapy will be administered as a "cycle." One cycle will be 21 days long. The first 4 days of the cycle are when the chemotherapy drugs are actually administered to Lauri via a "central venous catheter," otherwise known as a CVC. The CVC is inserted in Lauri's upper left chest and is used as the injection point for the chemotherapy. The use of the CVC allows the drugs to be injected in the same place, without causing continuous damage to the veins. The CVC will be inserted on Monday, April 23, at MD Anderson. The chemotherapy will be administered at MD Anderson's outpatient clinic. Chemotherapy begins on Tuesday, April 24.
After the drugs are administered during those first 4 days, there is a "rest" period of 17 days. The 22nd day is day 1 of the next cycle, when it all starts again. After the second cycle, we will meet with our Medical Oncologst and take a CT scan of Lauri's chest. The CT scan will be evaluated to see if the tumors are shrinking, and the dosage will be adjusted for future cycles as necessary. Lauri will have to endure at least 6 to 8 cycles of this chemotherapy regimen before being ready to undergo surgery.
Once the chemotherapy is over, and surgery is complete, we must be cancer free for 5 years before Lauri is allowed to bear children. We are praying that Lauri's ovaries survive the chemotherapy. Based on our doctor's experience, the further one is away from 20 years old, the more likely it is for that person to remain infertile after the treatment. Our doctor will be administering a drug called Lupron to place Lauri's ovaries into what she calls a "dormant" state, in an effort to protect them from the chemotherapy. It may not work, but it is worth a shot.
The chemotherapy drugs that will be used are called Adriamycin (Doxorubicin) and Ifosfamide. Both of these drugs are very strong and have a possibility of strong side effects. The effect on fertility is dependent on age and health, as noted above, so it's pretty much a toss up. Or Medical Oncologist's focus is on removing the cancer and preserving Lauri's life, not on fertility. Lauri feels most strongly about this side effect, but we agree that we will deal with the cancer first and kids afterwards.
Further side effects of the chemo regimen:
- Lauri will lose her hair as a result of the treatment. Our doctor said that she can prescribe a "cranial prosthesis," which is a totally cool name for a wig. Other options are to use scarves or simply nothing at all. The hair will return once the chemo is over, though.
- Adriamycin can cause mouth sores to develop. MD Anderson is currently offering a new drug, which can be administered with the Adriamycin, which can prevent the mouth sores. It is up to Lauri to take part in the test, and our doctor says the drug is designed to work WITH the chemo. Lauri has decided to take part in the test, and will meet with the doctor running the test at the end of the week.
- Blood counts drop. White blood cell counts will drop to zero during treatment. This means that Lauri will be very susceptible to infection with no ability to naturally fight it during the chemotherapy. I would ask that if you are sick, or feeling sick, to please NOT visit during this time. Red blood cell counts will also drop, and may need to be raised via blood transfusions along the way. Regular blood tests (I guess nurses call these "labs") will be taken every week during treatment.
- Ifosfamide effects the kidneys. Lauri has been advised to drink plenty of water and to eliminate the use of drugs like Advil. This effect will be lifelong, so I won't be buying stock in Advil…
- Just about every pain medication on the market is not approved for use during chemotherapy. Seriously…
- There is a potential for a neurotoxicity condition to develop as a result of the chemotherapy. This condition can affect thinking, causing it to be slower, and face recognition. The condition, if it exists, typically goes away within a few days of treatment.
- The chemotherapy can be toxic to the heart. Lauri will receive medication to protect the heart during treatment.
- The chemotherapy can also cause damage to the bladder. The drug Mesna is given along with the Ifosfamide to help prevent damage to the bladder.
- Nausea, but MD Anderson has gotten really good at controlling it.
Lauri and I both thank you all very much for your support and kind words. Today's meeting with the Medical Oncologist was expected to be difficult, and it certainly lived up to its billing. We are struggling with the new path our lives are now taking, but we are moving forward only because of your support. Lauri faces the fight of her life ahead of her, and she will need all the help we can give her along the way. Keep the prayers coming, and keep your faces smiling. We will win!
From the Mauldin News Desk,
Jeff and Lauri
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Some Good News - April 18, 2007
Our Medical Oncologist originally told us that egg harvesting takes typically 2 months, which we didn't have to give. Our doctor said that 2 months was too long to wait, and that chemo should instead begin as soon as possible. Lauri did some homework (she's a nurse, and typically tunes out most doctors, which is why I take all the notes...) and found some places on the Internet that showed the "embryo freezing" process taking only 2 weeks to 1 month. We provided that information to our doctor, and agreed to give us the time to give it a shot. Our doctor set us up with a Reproductive Endocrinologist for an appointment on Friday morning. Our doctor said that she is comfortable with giving a 1 month delay, but no more. That's all we need...
So, in light of this new development, implantation of the central venous catheter and the beginning of chemotherapy have been postponed to no later than 4 weeks from now. I will provide you with the exact dates as soon as they are scheduled. We are still scheduled for scans of Lauri's heart and abdomen/pelvis for the Friday (4/20) and Monday (4/23).
As for Lauri, the possibility of possibly preserving the chance to have children after the treatment is over was just the good news she needed. She is actually excited for the first time in a week, and we both have renewed confidence as we move forward. She is not in pain at all, and looks healthy. Thanks for all of the support. This news is proof that the prayers are working! No matter how dire the news, there is always a bright light at the end of the tunnel.
I will have more news when it becomes available.
From the Mauldin News Desk,
Jeff and Lauri
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Updates and Schedule - May 20, 2007
It's been a while since I last passed along any updates or news regarding Lauri's situation. We have spent the past several weeks pursuing fertility options in an effort to preserve a chance to have children after Lauri's chemotherapy cycles are complete. Embryo freezing is a cutting edge technology, and is also viewed as controversial in many circles. Lauri and I saught and obtained many different viewpoints and opinions about embryo freezing and in-vitro fertilization, and conducted hours of research on the process. We decided to proceed with the embryo freezing process. The process actually began a few weeks ago with Lauri taking fertility medications, and culminated today with egg retrieval.
I am excited to tell you that Fertility Doctor was able to get ten of Lauri's eggs, all in good condition, on Sunday morning (5/20)! Lauri was put under local anesthetic for the procedure, and other than being pretty tired afterwards (yeah, I know, what else is new??), she is doing well. The eggs are fertilized and then frozen until we are ready to use them, after the fight with cancer is done.
Now that the eggs are preserved, we are ready for the next step, which is coming quickly. We have received an updated schedule from MD Anderson for treatment during the next four weeks. I have laid out the highlights below:
May 23
- Initial blood tests, used as a basis for comparison during the chemotherapy process. This test will also be used to check blood levels for procedures later this week.
May 24
- Subclavian Catheter Insertion. The "subclavian" part of that name indicates the location, basically on her chest, just under the shoulder. The vein the catheter will be inserted into is actually right underneath the collar bone. This procedure is where Lauri will receive her "central venous catheter", or CVC. All future chemotherapy treatment will be given through the CVC. The CVC looks like an IV from the outside.
- CT Scan of Lauri's chest. Again, this scan will serve as the basis for comparison to see if the chemo is working. We are interested to see the results of this scan to see if the tumors have changed in size or number since our original scan in early April.
May 25
- Meet with our Medical Oncologist. This will be our final meeting with our doctor before the chemo treatment begins.
- Lauri is given the Palifirmin drug, which is a clinical trial that is supposed to prevent or reduce the occurence of mouth sores during chemo treatment.
May 28
- Day 1 - Cycle 1. This is the first day we start fighting back with the big guns. Lauri will receive Ifosfamide and Adriamycin (the chemotherapy drugs) over a period of 4 hours each day for four days (5/28 - 5/31). We took a "chemo class" given by the nurses at the Sarcoma center last week, and they tell us that the first 10-14 days are the most severe in terms of side effects. You may recall from my previous emails, these side effects include Lauri losing her hair, serious reduction in her white blood cell count, a slower drop in her red blood cell count, possible damage to her digestive and reproductive systems, and nausea. Lauri will receive medications to address each of these side effects, so we hope they are not as severe as they can be.
A reduction in Lauri's white blood cell count (it will likely drop to near zero) means that she will be unable to fight infections. Lauri will be given medication to help the body recover its white blood cells more quickly, but they will still drop during every cycle. It is absolutely imperative that you please CONTACT ME if you are planning on visiting, or even dropping by. I ask that you consider your own health before coming to visit, for obvious reasons. I encourage you to visit, just make sure you coordinate it with me first!!
Reductions in Lauri's red blood cell count will occur over a longer duration, since the body does not produce new red blood cells at as high a rate as white blood cells. Lauri will receive blood transfusions if her red blood cell count gets too low. The reduction in red blood cells also leads to the fatigue and tired feeling that many chemo patients experience. We may not be able to notice this very much with Lauri, since she always seems to be tired anyway! Ha!
Lauri will have regular blood tests on Monday, Wednesday, and Friday of just about every week during the chemo treatment process to monitor her blood counts.
May 29
- Meet with the "Integrative and Complimentary Medications" doctors at MD Anderson. Integrative and Complimentary Medications, also known as Alternative Medications, include everything from nutrition to nutritional supplements, herbs, etc. MD Anderson added this section to their hospital to aid in patients' understanding of what's out there, and what they can use without interfering with the chemotherapy drugs. Hopefully, they can give us some ideas on what we can do, eat, or take that can help us fight the cancer.
The first cycle should be complete on June 17. We will begin cycle 2 on June 18...
That's about it for schedule stuff. I wanted to take a second to thank you all for the cards, posters, books, pamphlets, internet research, opinions, well wishes, and offers of help that we have received from each of you. Lauri has absolutely loved the visits, both in person and through emails, cards, and phone calls.
Cancer is a tough disease, and forces us to make choices that we never thought we would have to make. We have a difficult road ahead, a road that sometimes we just don't want to walk down, but we must. Cancer can take away everything from some tissue, to limbs, organs, or even a life. But cancer also can generate within you a strength that you never thought you had. I have never seen a braver, stronger person than Lauri, facing the road she has laid out before her. We discuss her treatment plans and concerns every night, and I can tell you that our attitude is very positive.
There will be days ahead when life gets very difficult. There will be days ahead when the chemo that is trying to knock out the cancer, will knock Lauri to her knees. It will be the prayers, the thoughts, and all the support of our family and friends that will give us the strength to stand up again and keep bringing the fight. Thanks again for everything, we begin to fight back in just seven days, and we will need everyone's help to win.
And we will win,
Love,
Jeff and Lauri
2 comments:
Hi Jeff and Lauri
My thought and prayers are with you every day. If there is anything that we can do to help you out please let us know. I am holding calls so as not to call when Lauri is resting, but really would love to hear from you. Lesa
Thanks for the blog site. Now we (the concerned public) can find out how things are going without having to bother y'all too often. Thanks also for the pics - I feel like I was just there visiting. Lauri has an interesting looking backpack! Let me know what I can do to keep you both going strong. Love, BONES
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