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Marion, I would live to meet you in Miami for the conference. I probably can’t do the whole week with my schedule, however, I would like to do whatever I can so we can touch base as we near October. No matter what, we definitely need to meet since you will be so close to me, I would love to meet one of my inspirations on this board.
We will be in touch,
Tom
I guess it’s been a while since I posted an update in this specific section, but I did give an update in the “Good News” section in January where we had found that Ben’s primary tumor had shrunk over 20% when it was measured after his fourth round of chemo!
So he’s now been through five complete rounds (10 administrations) of the GEM/CIS combo, with the start of his sixth round coming up this Friday, February 11th, 2010.
All in all, everything is still going well – Ben still has minimal side effects. His hair is still somewhat thin, but it really hasn’t gotten any worse since the first couple of weeks. Still no nausea. He is becoming more fatigued and we are finding it is taking him longer to bounce back and feel “normal” again after his chemo sessions. Early on, he would feel almost normal after the first couple of days, now it seems to take about a week to get back to that “normal” feeling, but I suppose that’s to be expected.
He is also experiencing some neuorpathy in his hands – he seems to have a bit less feeling in his finger tips (as he demonstrated to me the other night as he was stabbing his finger with the pointed end of a knife – which I subsequently scolded him for)….so we will continue to watch that.
So for now – everything still going pretty well, just watching the neuropathy and dealing with a little fatigue, he’s not going to the gym as much – just resting a bit more a couple of times a day, but he is still quite active around the house (as he was out powerwashing the pavers all around the house the other day), so still thankful about all of that.
That’s it for now, I’ll be back as we progress. I don’t get on here as often anymore but I do try to stay in touch just in case I can offer any help to anybody….but if anyone has any questions feel free to email me.
Tom
Welcome MJ,
Sorry I don’t know anything about the detroit area – but am wishing you the best of luck on your Gem/Cis regimen. My Ben has now been through 5 rounds – and had an MRI after 4 rounds which showed shrinkage of his primary tumor of over 20%. He’s had little to no side effects – just some hair loss and some fatigue, so he’s been lucky. You can look for my posts in the chemotherapy section…I have been trying to post updates there to share with others. You will find many other posts them from others and their experience.
tom
Marion.
Thanks for all the great information. I continue to be amazed at your selfless contributions to this organization and site. I would be more then happy to attend a conference if it’s in the state of Florida, or easy to get to nearby and I can fit it in around work.
Tom
Mary, thanks so much for taking the time to post…obviously there some shining lights out there so I think every time I am feeling down I am heading to the good news section. It always helps!
Tom
Cyndi,
My deepest condolences for you and Linda’s family. She was a lively spirit on the board here and I enjoyed her posts and definitely learned some valuable insights from her experiences. I am sure it’s a very difficult time for everyone but we are here if you need us.
tom
Mary,
I have a follow up question to your comment about people doing well here that didn’t have resections. I must admit they are hard to find, and I a so glad your husband has done so well. If someone could point me to some of the good news patients who have done well when diagnosed at stage IV, I would love to read them as I can’t seem to find any and would sure like to read some good news in those cases.
Thanks!
Tom
Hans,
I’ve struggled trying to come up with adequate words to express how I feel about Kris’s passing. I am fairly new on this board and didn’t exchange emails with Kris, but I feel through her posts I had a friend that helped me through some very difficult times. When Ben and I went to Denmark recently we drove over the Oresund bridge into Sweden and I waved at the two of you and thanked Kris for all her help (I’m fairly certain Ben thought I was crazy)!
Thank you for coming back and continuing on with the detailed posts, hopefully it helps you and I am sure Kris would have wanted us to know.
My deepest condolences, stay strong in the days and weeks ahead and come back to see us anytime.
Tom
I will say this is why I go through periods that it becomes difficult keeping up with the board because ultimately, when surgery isn’t an option (and many times when it is), the outcome is devastating.
I too am so humbled by so many courageous moderators on the board who I have grown to know so well, even though many are no longer with us.
The legacy they leave behind is profound, and while some days it’s difficult to be here – the courage with which they fought this disease keeps me going. When I needed help and information when first faced with Ben’s diagnosis – the detailed updates by so many helped me arm myself with knowledge.
To all of our fearless, selfless moderators I am forever grateful. I don’t know what I would have done without you.
Tom
Haven’t posted in a few weeks – but (luckily) nothing much to report. Tomorrow (January 7th) Ben will complete his 4th cycle of the Gem/Cis combo. He continues to do well with really no side effects with the exception of some hair loss throughout his body. His blood counts continue to look good and normal according to the doctor.
Next week he has an MRI which we will discuss with the doctor on 1/20, so we will anxiously be awaiting to see if the tumor has stopped growing (or hopefully shrunk)! Now that we are closer to that I would say that both of us are acting a bit nervous and I’m probably a bit more emotional these days. Things have been going so well with the chemo, and I think that builds up the hope that it’s actually doing something since he has had no other symptoms…but the proof will be in the MRI.
It’s amazing how life seems so normal outside of the chemo days – but behind all of it we still know what lies ahead, which some days gets me down, but trying to just take each day one day at a time, I do feel lucky that it’s been four months since diagnosis and everything seems to be going so well.
I’ll report back after the results are in, I am trying to keep up with the board as best I can! Take care everyone, my thoughts are always with you.
tom
How time flies! I have been so busy with work, visiting friends and family and the holidays I have neglected my postings here so I am going to try to do a better job.
Sitting in chemo right now with Ben. This will be the end of his third round on the gem/cis combo. We continue to feel extraordinarily lucky. While Ben has had some hair loss, he hasn’t experienced any other aide effects, no vomiting, no nausea. We pretty much are living our normal lives….so much so, that today he forgot he even had chemo! I woke him up to remind him!! How funny is that!
We met with the doctor last week, and his blood counts continue to be good….the doc said “you couldn’t hope to be dong this well”. So, for anyone questioning chemo, there are examples where it’s not so bad (at least for now).
Ben will go through one more round (two treatments) and will get another pet scan to see if the chemo is doing anything…sometime in January. So, for now we continue to count our blessings and looking forward to our first Christmas together in our own home (we usually travel for christmas). Bens birthday is this Saturday so I will be baking his favorite hazelnut chocolate mousse cake and we will be going to dinner at his favorite restaurant with a few of our closest friends.
Take care everyone! I will be better about watching the board! You are all so great and always in my thoughts.
Tom
Sorry for the delay in responding – it’s been crazy the last few weeks with work and the holidays. We did finally meet with the doctor last week and took a copy of the study with him.
He hadn’t heard of it (although I guess I wasn’t expecting that he was). He read it and said it looks like a small study (30 people) in one country (Austria), so while it could be a potential option if we find the current regimen doesn’t work, it wasn’t a significant enough study to change any course of action at this point.
He also said that cetuximab tends not to be covered by insurance (although I don’t remember his explanation). So, for now we will keep in on file and consider it for future use.
Thanks for continuing to find these things!
tom
Lainy,
Words can’t express what you are going through, but you and Teddy were an inspiration to so many people. You are loved and respected by those of us you have helped along the way.
All my best and my deepest sympathies for you.
Tom
Teddy,
My heart goes out to you. You are such a wonderful advocate and supportive person, I can’t imagine what you are going through having to give up your loving care to someone else…but you know things turn out the way they need to. All of us are here for you at anytime. Please feel the support of this entire family.
tom
