Good Afternoon...
First of all, everyone here is great, we are all "healthy" and time just keeps ticking away.
On Saturday the 5th Braedon celebrated his first birthday and he had a very nice party. It was Corinne's 2nd birthday just a couple of days earlier so we had a party for her at the Islands restaurant. It's just such a kick watching them :^)
I mentioned in my February update that I was going to be having a bone scan, a bone mineral scan, and another set of CT scans. I did that and last week Debbie and I saw my oncologist. The bone and bone mineral scans were, for all intents and purposes, negative. The CT scans showed maybe a 5% progression over the last couple of years. Sure as heck nothing to complain about :^) My oncologist was very happy with the results and when he is happy I'm happy!
This is a rather short update but I did want to let those who are interested know about the results of my scans. I'd like to go up to Portland in July but I've not even checked with Greg and Vicki yet to see if they will have any time to take off. Guess time will tell.
That's it.
Thank you, Marty
Good Afternoon...
Hey, only 7 months since my last update :^)
In August of last year Debbie and I drove up to Portland and visited Greg, Vicki, and Corinne (our granddaughter). Going both ways we stayed overnight in Redding and on the way home we also stayed at Jack London Square in Oakland. My sister and brother-in-law joined us in Oakland so that we could have some time to visit. The following day we all went to an event at my uncle's home in Atherton and then Debbie and I drove home. All in all it was a very nice week.
In July of last year Shellye completed the adoption of her second daughter, Tehilla. Until the time Shellye and Eliana picked her up in July in Ethiopia Tehilla had never really heard/spoken any English at all. In December the three of them flew to the US and stayed with us for almost the whole month. When Tehilla walked up to us at the airport she was speaking English, for all intents and purposes, fluently! Tehilla is 6/7, drop dead gorgeous, and very bright. She is really a kick to be around.
Medically I was a little busy the last couple of weeks. I saw my ID doc and he is happy with how I'm doing. I also had a CT of my chest, abdomen, and pelvic area before seeing my oncologist earlier this week. There has been progression of my cancer and in two months (April) I'll have another set of CTs done, a bone mineral scan, and a bone scan - yes, they are different. Those will serve as a new baseline and I will be starting new medication. Since the last medication I tried for my CA almost killed me I'll be watching myself MUCH more closely and so will Debbie. It's not good when the medication to stop disease progression is worse than the disease itself :^)
Later this year I'm planning to send Debbie and Shauna to Europe for a couple of weeks and the last few days that they are gone I'm taking my son-in-law and grandson to Las Vegas so that we can attend the Barrett-Jackson auction there. I have not been to Las Vegas since the 70ies and I've only been able to watch the Barrett-Jackson auctions on TV. Since Nate likes classic cars as much as I do I'm hoping that we will have a lot of fun.
Any questions, please feel free to ask.
Take care all and thank you,
Marty
Good Evening...
Would you believe, an update that didn't take a year from the previous one. Since my last update on May 10, life has been a little busy around here. I turned 65 on June 15th, Shauna turned 29 on June 30th, Vicki (my daughter-in-law) had her birthday on June 13th, and Debbie went to her 40th class reunion on June 30th. Factor in everything else that goes on during the normal course of life and it has been a little hectic. Oh yes, Debbie's brother who is five years older to the day than I am had his 70th birthday on June 15.
Debbie really wanted me to have a party for my 65th birthday so I finally caved in and we had a little get together yesterday for lunch. I took some 75 to 80, not sure of the exact head count, of my closest family and friends out to lunch at PF Chang's in Woodland Hills. We started at ~1:00PM and I don't think that Debbie and I left until sometime shortly after 5:00PM. It was really fun. We had four generations of family there as well as many friends.
There were a lot of Greg's and Shauna's friends there as these are the "kids" who grew up around our own and who I've been seeing since they were all little tykes. They have been good to this old man for a LONG time now and have also been a wonderful support system for which I'm extremely grateful AND they are just a wonderful group. Everyone should be so lucky to have their kid's friends be as nice and as ambitious as these are. What a mitzvah.
That's all I know for now. Be well all, have fun, and take care. Thank you,
Marty
Good Afternoon...
Today Debbie and I celebrate our 37th anniversary. Considering there was a time when I was told I likely wouldn't see our 25th I think this is pretty damned good :^)
There is even more good stuff coming down the pike. On June 15th I will be 65 years old. Back when they told me I probably wouldn't see our 25th anniversary they also told me I was unlikely to see age 50! Who ever "they" are, I guess I showed them... LOL
I'm even going to have a party - fancy that. I will NOT, however, accept any gifts but instead will list three of my favorite charities that if people feel that they must do something, they can contribute a few bucks to the one of their choice. I think that will be much more meaningful. Good luck anyone trying to figure out what I might want anyway. I need NOTHING and when I see something I really like I generally buy it on the spot.
Enjoy the upcoming summer months, I'm already doing so. I figure any day I can have the top down on my car is a good day and its not been up for a while now :^)
Take care and thank you,
Marty
Good Afternoon :^)
Not a lot has happened since my last update. My health is good, Debbie's doing great, all my kids and their families are just fine - pretty good state to be in I'd say.
I did want to mention that I've joined MySpace. I can be found at http://www.myspace.com/martinjhoward. For those of you who are interested please feel free to ask to be my friend and for me to be your friend. It's going to take me a bit to get used to MySpace - heck, I don't even know how to invite someone to be my friend, at least not the easy way yet!
I do hope I'll see some of you there.
Thank you,
Marty
Good Morning!
Again, it has been a good while since I have updated this page. A lot has taken place since my February update and I thought I'd fill in some of the gap for those of you who are interested.
When last I wrote anything I was just starting Nexavar for my cancer and looking back I was in fair shape. We had also just demoloshed the downstairs level of our TownHouse and had the foolish idea that it would take 3, maybe 4, months to put it back together again. Were we ever wrong!
In my last update I mentioned that the Nexavar was killing my appetite and that I was losing hair, etc. I really didn't realize what was actually going on for me as I have never truly been sick or moderately incapicated. Debbie, however, DID see that things just were not right and insisted that she was going to drive me to both my upcoming Oncologist and ID appointments and talk to my docs about what she had been observing.
I had all but stopped eating, lost some 30 pounds, my reactions had slowed down, I took longer to do tasks whether it was doing the books or writing an e-mail and I had about a third of the hair I had just a month or so before all this.
What the primary problem was is that my HGB (Hemoglobin) was down to under 7! The first day I saw my Oncologist when this was happening we decided no more Nexavar and I had also stopped my HIV Meds. His office is at the USC/Norris Cancer Center and he sent me from his office down to the "Day Hospital" where I was pumped full of 3 units of Packed Reds. You could actually see the color returning to my face and hands about the time the first bag was about empty and I still had two to go. From that point on it seems I was receiving 2 to 3 units every two to three weeks. They also started me on Aranesp when I had my third or fourth visit to the Day Hospital. I would get either 200 or 300 mcg of the Aranesp.
The same day I started getting pumped full they also wrote me a script for Megace. It has not been used as much for wasting or appetite as it used to be but let me tell you, IT WORKS!! I have never been a big eater and it would take my going for a long time for me to even think I felt hungry. Within 24 hours of starting the Megace I knew what people meant when they said they were hungry :^) For quite a while I was eating three good sized sandwiches per day ALONG with three meals and constant snacking. Essentially I ate from the time I got up until I went to sleep at midnight or so.
I quit the Megace a couple months ago as I'm up 35 pounds from my low point and that is a good weight for me. I also started on HIV meds again about a month after I had gone off the Nexavar and the HIV combo I was on. My CD4s are back up, my VL is not detected, and I've gone from seeing both my docs every two weeks to two months for my ID and three months for my Oncologist.
My hair came back thicker than it was before and much darker. I still have a lot of grey but not like last year. Even my kids tell me I look great instead of telling me I look like Sh--. I actually feel better today than I have in the last ten to 15 years! Go figure. I saw my ID last week and I have a CT scheduled for the first part of December. It will have been three months since my last one and at that time it showed little to no progression from the one previous to it. I should be so lucky this time - knock wood!
As for our house, would you believe the contractor STILL has a little touch up work to do but nothing serious. A dab of paint here, an electrical sub-panel there (just two breakers for two additional appliances) and that's about it. The work was, for all intents and purposes, done by the end of September. Everything other than the refridgerator is new and I LOVE my Wolf range. It is so very nice to be back to a gas range and be done with so many years of electric and then to do it with the range I have is true bliss. See, it doesn't take much to make me happy, just nice weather so my top can be down on my car and a 20 to 22 foot kitchen that opens into both the family room and the living room.
Enough of this stuff for now and I will try to do another update in a more timely manner.
Thank you and take care all,
Marty
Good Afternoon Folks!
It has been a while since I've had the opportunity to update this page for those of you who are interested, however until the past week or so I've really had nothing to report. Now, at least, I have something to talk about :^)
I recently had a new set of CT Scans done, lungs/abdomen/pelvis, and they showed no further growth of my CA since the scans taken before I started Nexavar (Sorafenib). This is a good thing.
The Nexavar is, however, beginning to take it's toll on me and I'm now going to be working with two of my physicians and a nutritionist to see what I can do. It seems that the Nexavar has all but destroyed my appetite! This is NOT a good thing as I'm not a big eater to begin with. Couple this with the fact that I can eat only a very few grams of fat in a day, thanks to my pancreas, it really makes it hard to put on any weight. If we don't get something going here it won't be AIDS or Cancer that gets me, it will be starvation!!.... LOL
I'm also losing my hair but I don't care much about that. Hopefully when things settle down it will thicken back up again along with my beard and eyebrows.
I e-mailed my physicians today and will talk to them during the week as well as making an appointment with the nutritionist. My time gets a bit messed up as we are tearing our house up, removing a load bearing wall, doubling the size of our kitchen, and essentially making the entire first floor a "great room." I'm going to have over 20 feet of counter space, LOTS of pantry space, a Wolfe gas cooktop, and a lot of other neat things. Now all I have to do is get an appetite back so that I can enjoy cooking in there!
That's about it for now. I'll report on what is done about my lack of appetite when I actually start eating again :^)
Thank you,
Marty
Good Evening!
After having to jump through a multitude of hoops my Oncologist finally got me approved for Sorafenib. It is a trial medication that is designed to cut the blood flow to my tumors and to hopefully keep more from developing quickly. It is not a "cure" but something that is supposed to slow metastasis way down, maybe almost to the point of stopping it. There are a few patients whose tumors have actually shrunk or died but I'll be happy with slowing down the progress until newer and better treatments come along. That is always the way I have looked at my HIV/AIDS medications and so far I can't complain, it was 20 years ago that I was first infected with HIV.
I picked up my first month's supply of tablets today and will take them q-12 hours. I'm going to start out at 6:00/6:00 as that puts them several hours away from my Sustiva and both of them are metabolized in the same way. It will be interesting to see if either or both need to be adjusted to do their jobs. It will also be interesting to see how, or if, I react to the Sorafenib. Typical side effects are some degree of lethargy and/or rash for the first few weeks to 3 to six months. Since the advanced CA has slowed me down just a little maybe I won't experience the lethargy as if the medication starts cutting of the tumors I should start getting that sapped energy back. Understand though, I've not really slowed down much, I just require an extra nap now and them :^)
Just thought I'd post today as I'm finally on my way with this and I'll update this page again when I have something to report.
Thank you,
Marty
Good Afternoon...
It has been a while again since I last posted to those of you who know me and/or care so here is where I stand at this time with my Clear Cell Carcinoma. Next Monday, a week from today, I'll meet with my Oncologist, sign all the papers, etc. and start on an "Open Label, Non-Comparative Treatment Protocol." It took the FDA, the company who makes the drug, and anyone else involved to get past all the paperwork, etc. to all us to get this thing going. I'm anxious to get started as #1 I want to see how it will work on my Clear Cell Carcimona (Advanced Renal Cell Carcinoma) in my lungs and #2 how it will or will not interact with my current ARVs as the metabolic path is the same for the Cancer Medication as it is for Sustiva and could, or could not, require adjustment of either or both of them to keep the proper serum levels so that we can keep both my Viral Load and CD4s in good shape while killing off the Clear Cell Carcinoma. Fun, no?
To me it is all fascinating and I'm looking forward to the ongoing blood work, symptoms if any, etc. as if this works for me it could make a great option for others with both AIDS and Advanced Renal Cell Carcinoma.
Forgetting all the technical crap, I feel great! If I didn't know I had all this junk going on thanks to laboratory tests and blood tests I wouldn't have any indication that there is any problem. My sinuses bother me more than my AIDS and CA.
Here's hoping I come home with a bottle of pills next week and also more information as to how long I should expect to be taking it, etc.
Wish me luck :^)
Take care all,
Marty
Good Afternoon...
Just FYI I did have the surgery described below on July 11 and was let loose from the hospital on the 19th. Everything went well and let me tell you the whole experience was NOTHING like when I was filleted five years ago to have my nephrectomy. The whole thing took just over an hour and by evening I was alert and as obnoxious as ever :^)
The hospital stay was great, the nurses were fantastic, the food was excellent, the pathology stinks :^)
What I have is Stage III Clear Cell Carcinoma and I have my first meeting with my own physician Wednesday to discuss his thoughts on treatment options. I'm still waiting for a call back from the Oncologist at USC/Norris for an appointment with him. After evaluating the options available to me I shall decide on which sounds best to me at this point in time and hopefully get started with it soon. The fact that the tumor that was removed was Stage III doesn't bother me as the remaining two in my other lung are very much smaller than the one removed and hopefully I'll get a good jump on treatment and wipe the rest out. Time will tell, of course, but those of you who know me know that I'm a very stubborn person and simply won't have it any other way :^)
I'll keep those of you who are interested up to date by posting here when appropriate.
Thank you,
Marty
Good Evening...
I just thought I'd post for those of you who know me that they were not able to biopsy any of my lung masses because of their position. I've since had a PET Scan and am now scheduled for surgery on July 11. My surgeon will go in, look around, and then via VATS remove the 2cm mass. After that goes to pathology I'll actually know what I'm dealing with but my first guess of Metastatic Renal Cell looks pretty good. This is primarily due to the fact that the PET Scan was absolutely negative for any metabolic activity and that is typical for Renal Cell.
Just thought I'd mention it and say I'm anxious to get this over with so that I can get on chemo or what ever else is needed to stop this in it's tracks. My surgery is 5 years and 2 days after my Left Radical Nephrectomy and when I looked up when this was found it was almost 5 years to the day from when they discovered my Renal Cell Carcinoma in my left Kidney. I still think I'll just skip every fifth birthday and then there will be nothing to find... LOL
Take care all,
Marty
Good Afternoon...
It has been a number of months since I've made any comments here but I thought I would do so today especially for those of you who have known me for a long time, either personally or via the Web.
I am still going strong and consider myself to be healthy thought at the moment that might be debatable. I feel good but it seems that last month I was told I have CA in both lungs. I saw the surgeon who I thought was going to do a biopsy so we could know just what is going on in there but as it turns out none of the lesions/tumors/?? are accessable for a simple biopsy. Thus the only way to find out what's growing in my lungs is to excise the largest, 2cm, tumor and from that we will know just what needs to be dealt with and how.
My surgeon is going to be attending a conference all of next week so it looks like I should be able to get the surgery scheduled for the following week. I had thought that June 27th would be a good day but after thinking about that for a few days I figured out it is not. I want him to be back long enough to talk to a couple of my other physicians about certain things such as my Hemophilia, AIDS, etc. before he actually takes a knife to me. There are certain considerations I want to be sure are discussed and I also want to discuss a couple more things with him though the things I want to discuss can be done just before they knock me out. Looking at a CT scan the tumor he will excise is just about in the center of my lung and chest. It is just under my heart and next to the descending aorta. I thought the proximity to both might be a problem but he said that when he shuts the lung down it will pull away from the wall and away from those minor but necessary pieces of my anatomy. In addition he is a very experienced CardioThoracic Surgeon and deals with both of those things all the time so even if there were a problem it wouldn't be anything he wouldn't be prepared to easily handle.
While we were talking I told him that one thing I found funny was that before I began this Cancer crap all my physicians were either older than I am or at least very close to my age. Now I have a new set of physicians who are all my kids ages! This is not disconcerting but just weird :^)
I'm hoping for Surgery sometime between June 29th and July 1. I guess I'll have to do my fireworks watching on TV this year. Please wish me luck, or more importantly wish my surgeon luck and a steady hand and I'll update this after my surgery when I return home. I'm not going to take a LapTop to the hospital with me this time as I just really didn't use it enough to justify the risk of losing it 5 years ago when I had my Nephrectomy.
That's really all I know at the moment but I thought I'd mention it primarily for those of you who know me and still check here occasionally.
Thank you, Marty
Good Morning...
I thought that even though I'm no longer updating my WebSite I would post a few comments today as the past weeks have been very exciting for me. Last month my eldest and my son-in-law flew in for a week (they are assigned overseas) on their way to China. It was nice having the here for the week but that was nothing compared to their return from China on October 9th. Their first week in China was to see the area around Beijing. They had fun and saw as much as they could. How much they really remember of what they did is questionable as their minds were truly preoccupied. Why were they preoccupied you ask? I think I might just tell you :^)
After spending a week in Beijing they flew to Chongqing. After checking in at the hotel and having lunch they were off to the Chongqing Civil Affairs Bureau. Starting to get the idea yet? For those of you who know the routine - you are absolutely correct. For those of you who don't know the routine, most I'd think, when they arrived at the Civil Affairs Bureau
I've come a long way since the first of several times I was told I'd see my eldest graduate high school and 'maybe' my second but certainly not my youngest. Nor, I was told, would I see any of them graduate college, get married, etc. etc. etc.
Here, several years later and 19+ years infected, sits a GrandPa with two of the three married and my youngest engaged. All are in the working world, and GrandPa is enjoying every minute of it. I suspect that about this time of year, 2 or 3 years from now, I'll have 3 or 4 GrandKids and still smiling at those who told me, "No Way" several years ago. I guess I was just too stubborn to listen!
Thank you for having the patience to "listen." I'll scan a picture or two in the next week or so and post them.
Take care, Marty
July 17, 2004 @ 14:00
Good Afternoon. I have given a LOT of thought about what to do with my WebSite over this past year and really all I come up with is to just let it fade away.
I started this site in late 1994 / early 1995 when information on HIV/AIDS was not easy to find, AEGIS was still a BBS, and there were no search engines yet. Yahoo was still a directory on Stanford's servers where two VERY BRIGHT students were working on their PhDs. Actually I think that WebCrawler was the first search engine to go live and while it was good it was nothing like we have today.
I like to think that the site I created helped a lot of people find good information on HIV and AIDS in those earlier days of the WWW. Today there are so many good commercially funded WebSites, each having a wealth of good HIV/AIDS information, that my site really has become, for all intents and purposes, irrelevant.
I have pretty much decided to just leave it as it is, not worry about updating it or starting it from scratch, and if someone finds it of help, great. If anyone has ideas as to what they would like to see me morph it into I'd be more than willing to listen. If there is a need for a type of site that doesn't exist, and should, please contact me. I would appreciate any intelligent input.
Thank you, Marty
Thank you, Marty
Thank you, Marty