12/30/09

I saw my doctor yesterday before my scheduled chemo appointment. My blood test revealed that my red count and platelets had recovered well but my white count was so low that he cancelled chemo for yesterday. I'll try again next Tuesday. He is going to order another CT scan after the next chemo to determine how many weeks I can go between infusions. That is good news to me, one week between infusions has been to hard to recover from. He also said that my liver function has been improving each month for the last three months. Praise God, that was very good news. He also wants me to see an opthamologist because I told him that my vision has become blurry. Evidently chemo can cause cataracts. Other than that everything has been going well for all of us. We had a great Christmas and I hope everyone else did too.

12/2/2009

I had a good report on my last C.T. scan. The four largest tumors in my liver were measured and they have all shrunk by 1 cm in both directions. There are no new tumors and the spots in my lungs still remain unchanged. For right now I will stay on this chemo that is working on the slow growing cells. The doctor says if it stops working we will look again at the chemo embolization of the liver. After voicing my concerns about all the side effects that I experienced with the last round of chemo my doctor reduced the strength of the chemo and came up with some simple solutions for the other side effects. He wants my to have quality of life too. I'm looking forward to Christmas and am expecting to feel well enough to enjoy everyone and everything. I just had a wonderful Thanksgiving with my whole big family together in the first time in years. I am so blessed to have the love of family and friends and God has been so good to bless me with strength and recovery.

10/7/09

Well I didn't hear what I wanted to hear from the Emory Transplant team. They said they don't consider me a candidate because of the cancer I have being too aggressive. Their opinion is that cancer would just reappear in the new liver and being on the immunosuppressant drugs needed after transplants I wouldn't have a chance to fight it. Also chemo would be too intolerable after a transplant. In the meantime my oncologist had been communicating with the Peidmont transplant center and they came up with the same opinion. For now my doctor wants me to start a new chemo regime which will target the other type of cells (one type chemo for the slow growing cancer another for the aggressive cancer). I still covet all your prayers and I know God is with me. I have been so blessed with strength and resilience my prayer is to continue on this way.

9/11/09

I met with one of Emory's transplant doctors yesterday but once again I have much more waiting to do. He wants me to have an MRI done there to determine if all of the cancer is confined to the colon and liver. If that is the case he thinks I would be a good candidate for the transplant. Of course I now have to have that test done, be seen by one of their oncologists, and wait to have my case reviewed by their board. Hopefully they won't want more and more tests followed by more and more visits. My MRI is scheduled for October 2nd.

8/31/09

I spoke with my doctor last Monday but he didn't have much new information. He presented my case to the Tumor Board once again and they didn't think I am a good candidate for the transplant. My doctor obviously doesn't agree so he contacted Emory last week. I heard from an R.N. who said she is sending me educational materials and will have a scheduler contact me for an evaluation appointment. Other than that the doctor wants me to do one or two more rounds of chemo and an emboliztion on the left lobe of the liver. Hopefully something will happen soon with Emory. Thanks for all your concern and I hope I have good news to post soon.

Yesterday's Doctor's Appointment

It's chemo week again so I saw my doctor yesterday. He was very pleased at how much I had improved over the last three weeks. My blood counts, tumor markers, fever and pain have all gotten better. I know I feel a whole lot better. He didn't have any definite to say about the transplant, just that I will have another CT scan on the 17th that will help those doctors decide if I would qualify and therefore need to be evaluated by them. If a transplant is an option I will more than likely have to have the colon tumor removed first. So much is undetermined and there is so much waiting. My peace comes from knowing that God knows the outcome and it will be the best for me. Thanks in advance for your prayers.
Love,
Darlene

More Info From Doctor

I saw my doctor Monday and after reviewing my newest C.T. scan he is convinced that the chemo is working and that I shouldn't have to go through another embolization. In fact he said he would start looking into having my evaluated for the liver transplant. Such good news. The only cloud is that I am scheduled for more chemo in three weeks. I will have to ask him how much more of this he foresees. I have had chemo every day this week and it is definitely getting harder each time. Thank you for all your prayers I couldn't go on without them. Please think of Kevin too, he had a wreck last week and it is possible that his truck may be totalled. We don't need financial hardship on top of everything else.
Love,
Darlene

A New CT Scan

I had another CT scan performed a few days ago because of vomiting and severe pain near the embolization site. Great news! The left lobe of the liver which was not embolized is showing tumor death also. This means that the new regime of I.V. chemotherapy is working for me. Although the doctor said this chemo only has a twenty percent chance of being effective, I prayed and prayed that this would be my miracle drug. I will see my doctor next Monday and ask him if maybe I can get away without embolizing the left lobe. That procedure has been so painful and so difficult to get over, I would like to avoid the next one.

More Good News

I saw my doctor today and my blood counts have improved so much I started a week of chemo today. The good news is that the embolization is working better than anyone could have hoped. The tumors are dying rapidly and there are many tumors effected. The doctor can't say if it is the embolization alone or the combination of that and the I.V. chemo. Regardless, he doesn't want to change anything and he wants me to have the embolization on the left lobe of the liver in about two weeks. If everything continues to improve, I may be able to get that transplant after all. Thanks for all your prayers.
Love,
Darlene

The Doctors Visit that Became a Hospital Stay

I'm so happy to be home. I went for a follow up visit Monday and the doctor suggested i stay overnight in the hospital. I had a CT scan done to rule out that the embolization had caused abscesses in the liver. It had not and it did show that the tumors are dying as we had hoped. Also while in the hospital I was given fluids, I.V. antibiotics and two pints of blood. Evidently I was severely anemic. All the blood cultures they took are still negative so hopefully I'll start feeling better soon. The other good news is that my liver function tests are much better since the embolization. This little procedure is much harder to recover from than I had expected. Lets pray that it is worth the trouble.

Recovering from Embolization

Wow, how can six plastic beads hurt so much? Actually the doctors said the embolization went very well. He was able to place them throughout the liver so several of the tumors can be effected at once. I had it done Thursday, left the hospital Friday but immediately developed a fever. Kevin took me back to the doctor yesterday to get I.V. fluids and antibiotics and they took cultures to see if there is another way to knock out the infection. I feel stronger every day but I can tell this one will be a slow process. I still have plans to go back to work tomorrow because laying around certainly isn't making me stronger. No chemo this week thank goodness, the doctor wants to wait a week or two. I don't have anything else planned for awhile so maybe this will do the trick for a while. Thanks again for the prayers, flowers, food,calls, cards etc. etc.

1st Week of Second Line Chemo Over

I finished five days of chemo this week with just a little fatigue and some abdominal pain. I have a week off with the embolization next week. After speaking to my doctor last week I learned that the trial med is off the table, it is not for all small cell cancers, only small cell lung cancer. Also, he presented my case to the tumor board again and hopes to be able to find more chemo options after looking at the colon biopsy. I have also had the first ultrasound and the tech could not find anything on the left ovary. She thinks the CT was showing small cysts on the cervix that were mistaken for the ovary. Of course the radiologists will have to confirm this. All is well for now and I am touched by everyones prayers and concern. Lets pray that this second line chemo is the one for me.

New Info

I met with Dr. Bordoni yesterday and had many questions answered. The tumor on my left ovary of course has not been proven to be malignant but either way he is not calling it ovarian cancer. He believes it has metastasized from the liver. I will meet with the Gyn-Oncologist Monday,but per the conversation my doctor had with her, she will go in laparoscopicaly, look around and if it is just a couple tumors she believes she can remove them and the ovaries right then. Being done laparoscopicaly means a recovery time of less than a week. I will be having five days of chemo starting Monday followed by chemo embolization two weeks later with the ovarian surgery thrown in there somewhere. Also, my doctor has located the trial chemo at M.D. Anderson and is trying to get some sent here. He suggested that if that doesn't work, I could try the National Cancer Institute in Maryland to see if they have a trial. Thanks once again for all the prayers.

Change In Plans

Well the latest CT scan was not very encouraging. The tumors in the liver are still growing and new ones have appeared. Also there is a new tumor in the left ovary and the cyst on the right ovary is now looking suspicious. The plan is to try a new chemo and go ahead with the chemo embolization of the liver. My doctor is also looking into getting hold of a trial chemo being used in England that shows much promise. I will be meeting with a Gyn-Oncologist to see if removing the ovaries is possible. I go back to my doctor Friday to ask more questions and will update soon. Please pray for us,I don't want to give up yet.

2nd Round of Chemo Down,What's Next

My 2nd round of chemo went as well as the first with absolutely no sickness. My white blood count is very low so I will be getting a Neulasta injection at the end of each round starting today. On May 6th I have a CT done to see how well the chemo is working followed by three more days of chemo on the 12th. Dr. Bordoni is hopeful that if the chemo works well enough I won't need the liver embolization. Best case scenario is, this works, I go into remission and get on the liver transplant list within months. Thank you all again for all your prayers, cards, gifts, food, transportation, moral support, etc.,etc. Everyone of you makes a huge difference in all of this.

Colon Surgery Consult

I met with Dr Liberman today, a colorectal surgeon. His opinion is that if he does colon surgery I would have to be off chemo for several months and that chemo is much more important at this time than removing the colon tumor. He says there is no problem waiting until chemo is finished to remove it unless the tumor ruptures. If this does happen it would be a complicated surgery due to healing problems but he feels that there is a very small chance of that. So as of now I will have my three days of chemo this week with nothing else scheduled other than weekly labs. As always, your many prayers are appreciated and I feel them lifting me up.

P.S.
Goodbye hair, hope to see you soon.

Difinitive Diagnosis

I saw my oncologist today and he confirmed that the primary tumor is in the colon. His thought is that we may need to act soon on removing this tumor before it perforates and becomes an emergency situation. He will consult with a G.I. surgeon to get a definite opinion on how to proceed. As for now my embolization of the liver is on hold but I will continue on the I.V. chemotherapy regime. My next round is April 22, 23 and 24th. Praise God, I have not been sick at all and my doctor thinks I have a good chance of avoiding the nausea and vomiting altogether. He also said my blood count is still excellent. All in all it was an uplifting visit and I feel very hopeful of my outcome. I can never say enough about being lifted up in your prayers. I know with unending faith that God is hearing everyone of them.

Last Day of Chemo Round One

Finished the first round of chemo today and I still feel fine, other than jitters and insomnia from all the cortisone they gave me along with it. Next Tuesday I see Bordoni for blood counts, biopsy results on the colon and hopefully a decision on whether or not I'm ready for the chemo embolization of the liver on April 15th. Please pray that I will be one of the few that doesn't get too sick from the chemo...I'm not a good thrower-upper. Thanks again for all your generosity and prayers.
Love You All,
Darlene

1st Chemo Treatment

First day down, two more to go. Today took from 8:00 to 3:00. I received two types of chemo, numerous fluids, anti-nausea meds, and Sandostatin(for Carcinoid symptoms). Tomorrow will be just one chemo and should only take about 1-2 hours. I don't have any discomfort or nausea and was sent home with a slew of ant-nausea meds. The nurse said sometimes the nausea and vomiting hold off for 3 or 4 days. I'm hopeful these new meds will help tremendously. Next week I meet with the doctor to check my blood counts and get the results of the colonoscopy biopsy. All of this will determine if I'm on track for the embolization in 14 days. Thanks go to my husband and all my "sisters" for taking care of me today. Being distracted through this is a good thing. All of the cards, cartoons, food and goody bags are such a comfort. Oh yeah, thanks to Chemo Joe also for being with me and standing guard!

The Good and the Bad

First the good news. The cyst on my ovary is just a large cyst and not cancer. The sciatic pain I'm having is not related to the cancer but is a herniated disk in one area and a degenerated disk just below it. The not so good news is that the tumors in the liver have grown significantly and Dr. Bordoni wants me to start treatment next week. This will be three days of I.V. chemotherapy followed in 14 days with chemo embolization in the liver. A week or two after that I will have another three days of I.V. chemotherapy followed again by chemo embolization after 14 days. When these two months of treatment are finished he will do another CT scan to see if I'm in remission. The good news is if I do have a remission the doctor thinks I'm a good candidate for liver transplantation. He is still very encouraged by my lack of symptoms and he has presented my case in two symposiums to get feedback from other oncologists. Although I really expected him to say the cancer was growing slowly and that I could do the embolization alone, I'm ready to take on the chemo (not at all happy about it, but ready). I will be having a colonoscopy Monday and then on to chemo on Wednesday, April 1st. Please pray for my little family to stay strong and encouraged.
Love,
Darlene

More Positive Feedback

My follow-up visit with Dr. Bordoni went well today. The results of the 24 hour urine test is yet another indicator that my cancer is a slow growing carcinoid. This along with my health and mild symptoms lead my doctor to believe that this will be easier to manage. The CT scan next week will indicate if anything is growing or changing. The MRI scheduled for that same day is to diagnose whether my sciatic pain is simply a pinched nerve or something related to the cancer. Near the end of March or the first of April I will be having a colonoscopy( Dr. Bordoni still suspects this is where it began). Blood was drawn today to help him get more information on the ovarian cyst that we are are hoping is only a cyst. Things are progressing and I feel much more peace now. If there was ever good news concerning cancer, this is it. Thank you all again for your support. The transportation, a hand to hold during appointments, food, cards and especially prayers. Everything each of you do leaves me blessed and I feel God smiling over us.
Love, Darlene

Vanderbilt Visit

I saw Dr. Jill Gilbert at Vanderbilt yesterday, she is one of the few doctors nearby with experience in Merkle Cell. She assured me I don't have Merkle Cell but that my cancer is in the same group of cancers. Fortunately there are also much less aggressive cancers in this same group. The confusion the doctors are having is that my pathology appears to be an aggressive fast moving cancer, while my physical exams and symptoms appear to be a much more manageable slow growing cancer such as carcinoid tumors. Dr. Gilbert's suggestion is to get another CT scan to show what has progressed. If nothing has changed or grown in the six weeks she would feel comfortable with me having targeted liver therapy such as mechanically strangling the tumors. If the cancer has progressed however, she strongly suggests I.V. chemotherapy. Although that is what I hope to avoid she assured me it is not as bad as I am anticipating. Dr. Gilbert feels I could do four rounds of chemo with a long remission afterwards.
She also stated that I should not assume the six centimeter cyst on my ovary is only a cyst without biopsy proof. Also she wants my sciatic nerve pain looked into. Of course I have a million more questions for my oncologist now, but at least I am learning and moving forward with a plan of attack. Again, thanks to everyone for your prayers, they truly change everything.

Second Opinion

Wow, what a day! Kevin and I saw another oncologist from a different practice today.(I was looking for one that practiced at Kennestone because Kennestone has a more advanced cancer center). After reviewing the pathology report and speaking to the pathologist while we waited, he does not agree at all with the first diagnosis. If this is the type of cancer he believes it is, it is much less aggressive and can be treated much more conservatively. For now he wants to start with a 24 hour urine collection. If he sees what he thinks he will with this, my next step is simply a colonoscopy. Yes it is still stage four but the prognosis is so much better. He is advising not to rush into chemotherapy. (So glad I didn't get all my hair cut off as I had planned!) My prayer has been to see Vann's 18th birthday and praise God, I just might. I am still travelling to Vanderbilt next week and am anxious to see what they think. Thank you all for your constant prayers.
Love,
Darlene

Diagnosis History

This whirlwind has all happened since the second week of January. After four to five months of having mild stomach aches one or two days out of the month, I went to my primary care physician to get checked for a gall stone. When Dr. Ujjin saw the ultrasound he raised the concern of metastatic disease because of seeing liver lesions. Next came the CT scan which revealed twenty tumors in the liver and small suspicious areas on the lung. The oncologist is still not concerned with these stating that everyone probably has scarring and lesions on their lungs.
My next step was a liver biopsy which tells the doctor where the cancer originated. (If there had been breast cells in the liver tumors it would be metastatic breast cancer, colon cells in the liver mean metastatic colon cancer,etc.). Kevin and I saw the doctor Tuesday and she revealed the cancer to be a very rare form of skin cancer called Merkel Cell Carcinoma. It is already stage four since it has metastasized to the liver. The only course of treatment she has to offer is chemo therapy to hopefully shrink the liver tumors. I am still very strong and healthy and would not know any of this was happening if not for the doctors opinions. We are all working on getting me a referral to Vanderbilt and M.D. Anderson. Next week is a second opinion here locally and a PET scan to try to locate the skin cancer(Not visible to us or the doctors). We are so blessed by our friends, family and co-workers. Everything you do is a huge help and we truly feel wrapped in your prayers.

Whats Going On With Darlene

Darlene has been dignosed with Merkel Cell Carcinoma...correction, Darlene has been MIS-diagnosed with Merkle Cell.

http://www.merkelcell.org/