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Hello to all, from a girl who loves her dad...


Katie78

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Hello everyone,

I'm not sure if this board is the right place for me to post, but I have searched the internet for support communities and this seems to be the place where I have noticed the most similarity as far as diagoses and treatment options as my family's situation, so I thought I'd give it a go.

I am here because my beloved dad, Randy, was diagnosed with metastatic squamous cell carcinoma in December 2007...

Perhaps a bit of back story would be helpful. My father had a kidney transplant in 1982. He has been on immunosuppressants since then and, by the grace of God, has had no episodes of rejection. Apparently he is a medical anomaly, since most patients do not live for 26 years after a transplant. However, 26 years in a state of immunosuppression leaves one open to a host of medical complications, which leads us to where we are now.

At diagnosis, his SCC had spread to multiple lymph nodes. This type of cancer is staged in terms of how aggressive it is, and his is the most aggressive type. In addition, treatment options are limited because most chemo is processed through the kidneys, and this is not an option for my dad.

He went through three months of radiation treatments while also receiving Taxol, as Taxol is processed through the liver and not the kidneys. He concluded this treatment in March 2008, and we all waited and prayed.

In June 2008. his CAT scan revealed that the SCC had spread to more lymph nodes as well as to one lung. He has three nodules in his right lung at present. Thankfully, he was very proactive and soon left for a consult at MD Anderson. He met with a wonderful doctor who has treated other patients in his situation. His doctor felt that Tarceva was the best option, as the cancer is incurable and remission is unlikely, but the Tarceva could at least give us some more time.

My dad began the Tarceva regimen on July 24th (at the full 150 mg dose) and had to go off of it two weeks later b/c he had the most severe side effects his oncologist had ever seen. His rash had turned into sores which had become infected, and this is a huge concern for someone who is immunosuppressed.

However, after two weeks of steroids, antibiotics, and painkillers, we are giving it another go. His PET scan this week revealed that, while one of the lymph nodes in his chest has increased slightly in size, the nodules in his lungs do not seem to have grown and, more importantly, the cancer has not spread. He is now on a 50 mg dose of Tarceva and we are seeing how he tolerates it. If all goes well, we will continue to increase the dose with the goal of reaching 100 mg.

We are realistic but hopeful. We do not use words like "cure" or "remission," but "stable" is a big favorite for us right now. We are grateful for today. We are hopeful for tomorrow.

Your care for your loved ones and for each other inspires me. Any prayers or good thoughts that you could spare for my father would be much appreciated.

Peace to all,

Katie

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We are realistic but hopeful. We do not use words like "cure" or "remission," but "stable" is a big favorite for us right now. We are grateful for today. We are hopeful for tomorrow.

Hi, Katie. "Stable" is a favorite word around here too. Some of us have found that with Tarceva, "stable" doesn't quite tell the whole story -- after a few weeks we start to feel better, with more energy, increased stamina, and seemingly improved lung function, even if the scans show little if any shrinkage. How much of this is due to the Tarceva and how much is just the absence of Toxic Taxol and the like, I don't know, but it's a nice change, and I hope your dad gets those benefits too.

If you haven't already, may I suggest that you visit cancergrace.org (the previous onctalk.com has been folded into GRACE, Global Resource for Advancing Cancer Education). There's a wealth of information there, especially on lung cancer, constantly updated by a Seattle oncologist who is an internationally-recognized expert on lung cancer and who gives high priority to promptly answering questions from people like you and me. A lot of us have "dual citizenship" so to speak, and have the same usernames there as here. One of our Canadian members has put together a list of OncTalk and GRACE references on Tarceva, with emphasis on management of side effects:

http://cancergrace.org/forums/index.php ... 04#msg2904

One of my biggest difficulties with Tarceva has been fingertip and nail problems, which started at about the 2 month point, after my rash was pretty much under control. Those references contain some of my countermeasures for that.

You should be hearing from some of our mainland members in the morning. It's still your yesterday out here in the Pacific, which allows me to be one of the first to welcome you to the LCSC (I see Sandra from British Columbia beat me by a few minutes). I hope to see you at cancergrace.org as well. Aloha,

Ned

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Hi Katie-

Welcome to the forum. Sorry you need to be here but you will find this to be a great place with lots of really good people and tons of support oand information.

Please keepus posted on your dad. He is so lucky to have you by his side.

Hugs - Patti B.

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Welcome Katie.

Yes you definitely are in the right support group, we either have had lung cancer, still have lung cancer or are a family member to someone afflicted with lung cancer.

I agree with above re asking Dr. West if he has any ideas for you. It would be definitely more complicated to have lung cancer and be a survivor with a kidney transplant.

Keep us posted.

Donna G

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Hi Katie and welcome!

Tarceva has worked wonders for me.

I too had very hard side effects starting out with Tarceva. After we realized the side effects I was getting, we stopped the drug and then restarted it at 25 mg. I increased the doseage by 25mg every few days until I worked up to the 150 mg doseage. I ahve been on the drug since January of 2006 and have had my dose raised and lowered throughout my treatment. I have had great results at the 150 mg level and ALSO at the 100 mg level.

I have my fingers crossed that Tarceva is the magic bullet for your dad.

Wendy - 4.5 yrs adenocarcinoma survivor

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Katie, As you can already see by the outpouring of welcoming posts, this is a great site. Like Ned, I word both this and cancergrace.org but this is more my family and that is more my encylopedia of cancer. Not that you won't get lots of good info here but for my this is my emotional crutch.

Welcome aboard. Keep us posted so people can offer support or helpful information on how to deal with things as you go.

Judy in Key West

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Thank you so much for your warm welcome and kind words! This is truly an awesome community.

My dad has completed his ninth day on the 50 mg dose of Tarceva and has declared that the side effects are minimal and certainly manageable. We are so pleased that he is tolerating the treatment well, since this means that it was not a drug toxicity reaction but just too much, too soon. In three days, he will progress to 75 mg and then in another 12 days up to 100 mg.

I told him about the replies from all of you, and he was so encouraged to hear of others with significant side effects who were able to eventually take the full dose and enjoy a marked period of stability. He is truly keeping a positive attitude (and my father is certainly not an optimist by nature) and is willing to explore all options open to him. We are so grateful for that.

Thank you all for your encouragement and prayers. I will keep you updated on my father's progress.

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Welcome Katie!

I have been on Tarceva since February 2007 with awesome results - Make sure you read Neds info on the Cancer grace site, his side effect suggestions have been very helpful to me.

prayers are being said for you and your dad

peace

Janet

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