Day four of ICE

Doing really well. Not feeling bad. I get my pump off in the am and I'm thinking about heading down to Danville, KY two hour drive for a couple of patients. We will see how that goes! Raymond made one trip out on the bus and for good reasons (I feel) does not want to continue scanning for me. I'm now looking for someone else to help me out. Thinking they need to be an R.T. (R). I may call Mary Kaye and check in with her to see if she might know someone.

Thanks to Virgil for bringing me lunch today. It's always great to see him. I think over the years since my Dad died in 81' that he has stepped up to his replacement. I've always felt like he was the father I never really had. Love ya!

Alan

Day three of ICE

Long day sitting at he Cancer Center! Got there at 8:30 and left at 4:00. Had a great lunch with my friend Barbara. She is great! We talked about everything and I think I may have stirred up an old hidden talent she has, that has not been explored for sometime. I think together we may build upon it and turn it into something good! I hope I've inspired her to see if she can still paint. We will see.

As for me, I was told that day would be my worst and I actually feel real good. Still very tired but no leg cramps, abd. pains are all but gone, lab counts are good. I'm feeling much better as compared to the other chemo I had. I just hope that it's doing what it is suppose to be doing!

December 4th I'm scheduled to get a Neulasta Shot to boost my white blood count in order for me to move into cycle two of ICE...the problem is I would be schedule to take it during the week of Christmas and they facility is not open enough days for me to get all my treatments in. The following week is just the same with the New Year so it looks like they are going to let me start my second cycle on December 18. If I figured it out right, my third cycle would begin on Jan. 8th. After that I will head to Cleveland to get a PET/CAT scan. AGAIN, these are all tentative dates: Feb 5th I would meet with Dr.Dean Feb 6th with the Stem cell coordinator, Feb 7th I would start a round of Chemo. Feb 9th-22nd I would start drawing off my stem cells in combination of continued chemo treatments and it looks like Feb 26th I would be admitted and be there for 3 1/2 weeks. After I go home, I would not be allowed to do very much for about a month.

Raymond scanned his first patient for me today I will check his work and see how he did. I hope he works out!

Mal had the locks changed on her apartment. It sounds like Adam is moving out for sure. She seems to be doing pretty good and is going to try to maintain the apartment for another month in hopes that she will be able to afford it, but I think had Mother and I have determined she will not be able to do it but she has to see it for herself.

Anyway, treatment 4 scheduled for the am. I ahve one patient to scan in Louisville and I'm going to try to get it done after the chemo is done. Might have 2-3 more scans on Friday. Like I said, I'm feeling like I can do it as long as I don't have to drive too far. Nites!

Alan

Day two of ICE

Long day at the cancer center! 8:30-4:15.

Last night my legs got real crampy along with some abd. pains but not real bad. Overall it doesn't seem as bad as ABVD. I'm getting tired and feeling not like doing too much. But sitting around all day doing NOTHING would make one tired!!!! Man it sucks just sitting around that place, unplugging your IV, dragging it to the bathroom, just being there SUCKS!

I don't feel down I just feel really tired. Day three tomorrow. I'm taking my Bible with me and I have a friend that is going to bring me lunch. My dear friend Mark stop in to see me and it was nice to have a visitor! Really, he is my insurance agent and we had to take care of some buisness but he is a good friend. Try to update you tomorrow.

Alan

First ICE treatment--Interesting Hodgkin's links

Well, I got to the Cancer Center at 8:30 and was finished at 4:30. I have an external pump attached to my port and they will take this off in the am when I return for treatment two. This is Monday, Tuesday, Wednesday and Thursday and I guess I will head back into the clinic on Friday to get the pump off.

My muscles are aching, I've felt a bit nauseated but not to bad. Really trying to stay up with all this and not let it get me down. They tell me that one of treatment (one full week of chemo) equals one cycle. After the first cycle is complete, NO MORE TREATMENTS for two weeks. So, it is a week of treatment, two weeks off before my next round. May this might be good in that it will allow me to work some but I was really wanting to get it over with and head to Cleveland. They are still telling me I will need three cycles before I head up to get a PET/CAT scan at their facility.


My insurance looks like they will pay for travel, gas, food and hotel as I need it for up to $10,000. This might work better staying at the hotel at the hospital when I start dumping my stem cells off.

I got a phone call today from an old friend Keith Carpenter and it never fails that he has always brought a smile to my face when I talk to him. I would venture to say he does that with everyone he meets, except for the bad guys! As teenages, we worked together at Gateway and I think we played more than we worked! He is a great guy and it was a pleasure talking to him as always. My Mom came with me today. They gave me Antivan? it made the room spin, did not like that so I think I will eliminate that tomorrow.

I'll try to update you all tomorrow.

I found some interesting links:

http://www.hodgkinsdisease.org/

http://www.remission.org/links.shtml

http://www.wikicancer.org/

http://www.medicalnewstoday.com/medicalnews.php?newsid=32190&nfid=mnf

http://patient.cancerconsultants.com/hodgkins_cancer_treatment.aspx?id=752

http://www.leukemia-lymphoma.org/all_mat_toc.adp?item_id=9877

http://www.cancerbackup.org.uk/Cancertype/LymphomaHodgkins/General/Yourfeelings

http://www.webmd.com/content/article/6/1680_51429.htm

http://www.lymphomainfo.net/hodgkins/resources.html

Alan

More information

Cleveland calls and tells me that I had to get another CAT scan of my Chest, Abdomen and Pelvis which I had done this afternoon at Priority Radiology here in New Albany.

The stem cell coordinator called me today and tells me new information. First off, there was no need for me to make the trip back up to the clinic because she can provide me all the information I need over the phone or email. So, she tells me that I must first respond to chemo to a point (I guess) that the PET scan is within normal limits~not showing any hot areas. With this in mind she continues to tell me that I may have to have three cycles of chemo down here before I head to Cleveland to have the PET/CAT's scans there. She acted like at that time I would move into the process. Chemo starts on Monday and it sounds like one week of treatments and off a week~this I would venture to say all depends on my blood levels~if something is out of whack, it might be two weeks off before my next treatment.

It's looking like I won't be heading into the SCT procedure till sometime in Jan. I will find out more on Monday from Cleveland and I will let you know how I'm feeling after my first treatment. I hope it goes well and doesn't get me down. I would like to try and get some work done at the office.

I think I have found someone to do my scanning when I'm not able to. His name is Raymond and he seems really nice and I think a quick learner. I've shown him the In's and outs and I think he's got it down. Thanks to Mary Kay at Spencerian College for helping me out!

Katie thinks she got food poisoning. So sick that she had to go the the Emergency Room today severely dehydrated. Ran a couple of bags of fluid in and she perked right up. No more Tumblweed for her for a while!!!

McKenna is a sleep in my bed. She is spending the night with old Pop'eee. She is the sweetest thing. I hope she sleeps all night. Mallory has been pretty upset with Adam and she tells me he does nothing to help. I'm not for sure if it's going to last. I think she is starting to think the same.

Keith, Cathy and the kids are coming to town and I've been invited to his parent's for Thanksgiving meal on Friday. Yes, they celebrate Christmas on Thanksgiving day. Why? I guess that is the only time they all can get together to exchange presents. I can't imagine Christmas shopping so early. I'm still going to wait till a day or so before Christmas to do my shopping as I always do!
.
Anyway, don't eat too much and have a Great Thanksgiving!

Alan

Plans keep changing

Dr. Chowhan calls and says that I need a full week of chemo and with the Holiday at hand, the first day is scheduled for Monday 11/27. The chemo at the center takes 5-6 hours each day for four days and I guess one of the drugs they give me is a 24 hr drip in the form of a pump. So it looks like I will be spending most of the week at the cancer center and in my own bed. I hope it's not bad. Alan

Cleveland Calls

I spoke to Dr. Smith who has been in contact with Dr. Chowhan and he told him that I needed to get going on Chemo this coming Monday and postpone my follow-up appointment. They want to do ICE which they tell me is a 24 hour pump, for four consecutive days. That would be called one cycle. They act like after my first cycle that they would see me in Cleveland and discuss the SCT game plan. I most likely will return back home for my second round of ICE. After that start collecting my stem cells and most likely move right into the process.

Dr. Chowhan calls

Dr. Chowhan calls me and tells me that he spoke to Dr. Dean at the Cleveland clinic and they want me to get started with more Chemo. (ICE: ICE: Ifosfamide, carboplatin, etoposide). This would be 4 days in a roll with a 24 hour pump attached to my port. He said that I would have to start this on a Monday~why not any other day of the week is beyond me~so I can't get started until 11/27. Almost another full week after I see Dr. Dean in Cleveland. He didn't say anything to be about repeating the Bil. bone marrow taps. I hope I don't need them! Anyway, I guess my next post will be after I get back from my consult which will be right before Thanksgiving! Have a nice Thanksgiving you all!

Alan

Cleveland Calls

I got a phone call today from Dr. Smith at the Cleveland Clinic. He concurred that the pathology slides is showing recurrent Hodgkins's. I expressed the conflicting opinions of my oncologist and he just said that I need to stick with their plan of treatment and that would be to move forward with SCT. My appointment is 11/21 @2:00 to further discuss the game plan. He said that he would call Dr. Chowhan and try to get me going with Chemo prior to me heading up to Cleveland. He told me that Radiation is not necessary nor indicated for my cancer and SCT would be the choice of treatment at my stage and age. He said that I was not Stage II like Chowhan said, but I would still be Stage III as it was in the beginning.
For some reason this does not change. I questioned the bone marrow taps and he thought I would not need that but he was going to check with Dr. Dean to make sure.

Not a lot of options at this point so I'm trying to get my head straight with regard to what I'm facing. Dr. Smith said that he has read some of the blogs out there but was reassuring me that everyone responds differently. He said it was a good thing that I did not really get sick with the first round of chemo and my labs were always within normal ranges. I have to face this challenge with the best fight that I can give it. Keith and Cathy are going to the appointment with me. We are getting questions/thoughts/concerns on paper prior to the appointment. Getting my head straight (my BIGGEST worry) is the kids. I've got to face reality and worry about ME. Kids will be fine and I will only be away for 5 weeks or so.

Business: Trying to find someone that can do my scans for me. Showing Katie how to run the business. Alice's last day was today. I'm going to have to tap into my retirement to make ends meet. Met with two marketing reps today about stirring up more business for me and they presented some new ideas. I hope we can work things out.

Asking you all to keep praying for me and I will do my best to keep you updated as treatment moves forward.

Blessings!
Alan

Follow-up Consult with my local Oncologist

Well, I had my follow-up consult with my local oncologist and he seemed a bit ‘put out’ with me. Almost like he was mad that I got a second opinion with the Cleveland Clinic.

He was telling me things much different than what Cleveland told me. He said that the first thing I need to do is to repeat the bone marrow taps to make sure that it is not went to my bones. If it did, I may not even be a candidate for SCT. He said the second go around (this time) with chemo, there is a higher risk that the cancer I have might not respond to chemo, if so, than I would not be a candidate for SCT. “We would hope that it would respond” he said.

SO, my hopes for getting a game plan in place today is still up in the air. He says that I need to go back to Cleveland and see what they want to do. It was almost like he couldn’t do anything else for me, which really upset me. I’ve been a month and a half without any treatment since my cancer has returned and it’s going to be a couple of more weeks before I can get back to Cleveland. (11/21) appointment.

Dr. Chowhan thought that I needed to do two cycles of chemo, draw my stem cells off and keep moving forward with the SCT process, which is not what I wanted to do. I asked Cleveland if they thought I could do just Chemo and Radiation with the hope that it would not return by checking it every three months or so with a PET and they said no problem. BUT, I knew that if it would return a third time that my only out would be SCT. They acted like I still would have a 90% chance of full remission after the SCT. Dr. Chowhan disagreed. The likely hood of the chemo responding the third go around is like 20% and that would give me a 20% to survive this cancer.

I’ve prayed over all this and I think that I just have to stick with Cleveland. Chowhan can’t do the SCT anyway but he did say he could do the chemo down here for me. I guess I will head back up to Cleveland and see if I can’t get me a game plan, which I was hoping would have been in place today. FUSTRATING!