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Thanks and Update

amanda_33
Posts: 13
Joined: Dec 2011

Hi everyone!
It's been a couple of weeks since I have posted anything, but I seem to be drawn to this site daily. I get on and read about everyone's experiences and it really helps me to realize that there are people who truly understand what I am going through. So, I guess I said all of that to say thanks for sharing your stories and experiences. Well, I had my third chemo treatment today and so far everything seems ok. I have noticed that my stomach feels queasy, my legs are a little shaky, and I'm tired than before. I am going back and forth to the doctor several times per week to have bloodwork done and so far he said my levels look great. I had a CT scan done last week to see how much the mass has shrunk after 2 treatments. The mass on my lung was 14 x 8.8 cm, so I'm looking forward to finding out how well the chemo has worked so far. Now for the questions. When I saw the doctor on Tuesday I asked him how many treatments I would have to have and he told me that it would be 6-8, he wasn't sure yet and to remember that I had a very large mass on my lung. He also told me that he was certain that it was shrinking and that some people go into complete remission after only 4 treatments. He also suggested spliting my chemo up into 2 days with a bag of fluids so that hopefully I would not have to come back so many days for fluids, but then he said, but it will all depend on how your bloodwork looks so you could possibly have to come back for fluids anyway. So, I may be being overly sensitive or maybe the chemo has made me a little crazy, but it's like he gives me an answer, but doesn't really give me an answer. I know that he can't tell me something that he doesn't know and that every case is different, but did any of you experience this? Also I have been on several discussion boards and read stories of people with the same type of cancer that I have and took the chemo and didn't go into remission. I am SO worried about this, because of the size of the mass. I try not to think about it, but whenever I breath in deep I can feel pressure on the left side where the mass is. I have been thinking about taking some time off from work, not that I feel terrible so far, but because when I wake up in the mornings I just feel like I need and want to stay in bed. I have also noticed that my students seem to be better at pushing my buttons and rubbing me the wrong way than ever before. (I hate this!!) When I was talking to a coworker about it, she told me not to worry about it, that it is probably just because I don't feel as good as I use to and my nerves are a little shaky. I realize that she is probably right. Maybe I do feel worse than I admit to, because afterall I am the same person that waited about 2 months before going to the doctor about my cough and shortness of breath beacuse "it wasn't that bad". So anyway, how did you handle work and taking time off when you were going through treatments? Sorry that this turned out to be such a long post and thanks for listening! Amanda

kylanel01's picture
kylanel01
Posts: 11
Joined: Jan 2012

Hi Amanda

I am starting with my 2nd round of BEACOPP for Hodgkins Lymphoma Nodular Sclerosis stage 2A - I am not sure if mine is a bulky mass or not. I had a 8 cm tumour in my neck growing down to my heart - and some sites say a bulky mass is over 10 cm and some say it is over 5 cm?

Anyway - I also feel shaky and a bit weak now and then, and I have taken a half day job at my work as I felt that with 2 small kids (6 mnths and 4 yrs) I just needed that extra time at home and to rest.

I am not sure about your doctor but mine is also a bit up in the air about treatment and as of now we are going to see what my PET scan looks like after my 2nd round of BEACOPP and depending on the results, he might move me to ABVD for 4 or 6 rounds. I believe the doctors take each case as it comes, and each one of us is unique in our cancer and in how we handle chemotherapy. Just try and remember that you are not alone, that this is a challenge but you will get through it and that with prayer and a bit of laughter, you will be surprised how quickly the treatment goes.

I am glad your blood work is good - so is mine and I hope it stays that way. Your coworker is correct, we are experiencing stuff we have never ever dealt with and so we are shaky, more prone to crying or getting upset and people can push our buttons more easily. I tend to cry a bit more than I ever did, as the kindness of people touches me and then I cry. I do believe that this journey has taught me so much in the 2 months since my diagnosis - and people never cease to amaze me with their stories and their kindness.

Take care and try relax a bit more and dont stress about staying in bed a bit more :>

anliperez915's picture
anliperez915
Posts: 748
Joined: Sep 2011

Hi Amanda,
I know exactly how you feel about the Dr. not giving you a straight answer. I recently switched Oncologist because my first Onc (although him being a very smart man) just couldn't give me a straight answer. He was always on a need to know basis which made me stressed out because I was never really informed about my whole situation. After I switched to my new Onc, I feel so much better he informed me about my whole cancer situation and what he recommended as for which therapy to go with. I'm having Rituxan as therapy since for me having chemo would be more harmful than beneficial. As for working I had to get on disability because when I was diagnosed I was looking for work and I didn't have any health insurance from my husband's work. I had to get on state medicaid (Thank God the U.S. has assistance like this) I don't know what would become of me if we didn't have this types of programs. Maybe you should take some time off from work, I've heard that the longer you get treatment the worse you feel. Take it easy Amanda and take care of yourself, you can always go back to work when you're done with all the chemo and in remission. Keep us posted on how you're doing!

Sincerely,
Liz

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