linda-z
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DianneH,
I was on the Gem/Cis combo and had very little side effects (only 52 yrs old though). The meds they gave me for nausea were terrific (Emend, Aloxi, Decadron and Zofran) and then Compazine if the others didn’t work (but I didn’t need it). I had 2 infusions (a week apart), then 1 week off (called a treatment) and I had 5 treatments.
What I did experience was tiredness the first week, then began to get a little better the 2nd week and was back to “normal” the week off. I know that the Gemcitabine (Gemzar) can make your white blood count get very low, but there is also something they can give you to keep it from doing that (a shot right after infusion forcing your bone marrow produce more white blood cells). Gemzar can also (50/50) cause hair loss. I lost hair, but only when my white blood count dropped. When it came back up, the hair loss (thinning) stopped.
I know that everyone reacts differently to all the meds, so take that into account, but know that there are meds there to help. Make sure that he doesn’t just suffer thinking that is what he has to go through. ASK about everything. Also, chemo can rob from your muscles, so I was told to eat more protein (not necessarily the fat, but protein – eggs, cheese, meat / fish). It helped, and little walks helped to keep up the energy more.
Good luck, and remember to ask as many questions of the doctors. Don’t just accept what happens. And of course, post here as much as you need to. Someone should have answers to help.
Linda Z.
Gavin,
Thanks for the tremendous info. If only this would be available now and found to be true for all cancers. Certainly something to keep an eye on. That is definitely going into my cancer book.
Linda Z.
Kristin,
If you’re still here reading our news (and I hope so!) I would like to add something here, a little of my story too. For some reason I didn’t see your original post so forgive me for just seeing it now because of recent new posts to it…
When I was diagnosed, my doctor was even hesitant to say I had “cancer”. He just kept saying I had a “cancerous growth” which diminished it. It made me come away from the Dr. office not feeling too bad after all.
My surgeon was terrific and had a great bedside manner, explained that I did in fact have this cancer and he wanted to get it out. He however, was very optimistic (nothing really wrong with that), but didn’t explain the “severity” of the cancer and what my options were.
Because of this “up” attitude, it kept my spirits up, but didn’t allow me to learn more about this often unusual cancer. I have heard of people all the time having chemotherapy and surgery and beating cancer. What I didn’t realize was that what I had was different than that. My cancer returned.
When I finally found this site, because of the language here, it made me see what I had and what I needed to do….become more aggressive in learning all I can about CC and it’s treatments so I can actively fight it rather than just listen to my onc or surgeon who may only have limited knowledge. Without the more severe language (yes it’s bad, horrible, awful), I would have just gone on depending on the medical field to “do their job”, not knowing that that may not be enough.
I am very grateful to this site for the harshness with which they have referred to CC, and also the tenderness with which they have handled the tough situations. CC is what it is. I give your doctor a lot of credit for her toughness in wanting to help make you feel better. But breast cancer, ovarian cancer, etc. are all bad diseases. But they are also more treatable and curable than CC. I needed to know that to be more aggressive about my cancer. I was too trusting and ho-hum about it before it reoccurred.
As I said, I hope that you are still here for the other tremendous benefits of this site. AND you don’t have to go to the “down” areas.
Linda Z.
Hi Irene,
Your post was interesting although I don’t know anything about the anti-androgen therapy that you mentioned. I am 53 and had my only child at 48 after 5 years of fertility treatments. When I was diagnosed with CC last year, my doctors were questioning my use of birth control pills. When I mentioned the fertility treatments, they became quite interested in what I took and for how long and what doses, etc. Nothing ever came of it, but I felt too that there was a hormonal link of some kind.
I also have a sister-in-law that went through fertility treatments at a later age and developed another rare form of cancer.
Just thought that this was very interesting indeed. Hope there are others out there that might have heard more about this.
Thanks,
Linda Z.Hi Tommy,
Welcome Tommy. Nice way to “mess” around with the computer! You found us, and that is a great thing. You will find real people here that will absolutely give you the straight information you can use.
Don’t give up hope. Often times the doctors we are dealing with only know a little bit of the great amount of information out there. The people on this site are from all over the world and can offer much info. Hang in there and tell Judy to not give up hope. There is always someone here to listen.
Linda Z.
Hi Jennifer
Although I’m a long way away from you, we are very similar in diagnosis….I’m 53 and was diagnosed with CC in March of 2009, left lobe and gallbladder removed April 2009. Only one lymph node had signs of cancer, but doctors thought they removed it with a clear margin. A small tumor in the right lobe was burned.
No signs of cancer at my 3 month CT scan following chemotherapy. My subsequent CT scan 4 months after that showed that the small tumor that had been burned was back, and possibly metastasizing to the lungs, but the doctors are debating on that one. It was too microscopic to tell.
I will be starting my 3rd of 4 treatments in chemotherapy next week. Our hope is that my next CT scan and PET will show nothing in the lungs and that the tumor will have shrunk so surgery can be done again.
All my best on your PET scan results and with the Onc appt. You will find that there is a wealth of information on this site to learn from. AND you will get it straight, not mixed up medical speak. At least you found us and are in the right place.
Linda Z.
Andie,
Just saw your message and wanted to welcome you here also. I too am a fairly new person here. I was diagnosed a little over a year ago, and didn’t know about this site then. I came on board a short time ago after my cancer returned following surgery. I wished that I had known about this site then. BUT I do now and so do you. This is the BEST place to be to find out things about CC and to get the much needed support.
Welcome again.
Linda Z.
Pam,
I understand your sorrows. My father passed away 1 month after my son was born. You have had a lot of “firsts” in this last year, and this is another one to endure, but it does get better. It does. I spent a lot of time at the cemetery remembering my Dad and trying to find something to “do” that could help me get over the grief. I now spend time planting grass seed and flowers at the cemetery and actually put a wind chime up in a tree near his stone. It was my way of leaving something with him.
My father-in-law passed away a little over a year ago too, and we also remember him by carrying on what he had done. He used to make sure that other family that had passed away always had flowers or wreaths on their graves on special days. He was a very big humanitarian and was always helping people. It sounds like your mother was the same. And it also sounds like you learned that from her and are carrying on her legacy that she left for you.
Family may always remember family, but it’s another thing to leave behind something for them to continue on with. Your mother would be proud.
I saw this somewhere and it always sticks in my mind ….
Kris,
The pool sounds wonderful right now! AND all the fat and protein you want to eat too? Terrific. Just the thing to build your strength and energy back up. At least it sounds like a fun way to do it.
Take care….lots of prayers going to you and Hans. (Way to go Hans on taking care of Kris….do you give lessons to other caregivers? My husband could stand to learn a little!)
Take care all…cats too. I bet they really miss you.
Linda Z.
Wouldn’t this be absolutely WONDERFUL to be able to use RIGHT NOW!!! No more waiting and waiting to have another PET scan or CT to see what is happening with treatment. Early detection on recurrences before metastasizing….the thoughts are endless.
Hurry up and make it available to all of us here, please!
Thank you so much for the info.
Linda Z.
Hans and Kris,
Hope today is better than yesterday (little improvements mean a big deal).
I just wanted to send my wishes and mention…..have you seen how many “views” of your original post on this are here? This should be a tremendous indication of how many prayers and love are coming out to you both. Keep up the fight!
Linda Z.
This was a nice article. It was really nice to see something in print actually mention the type of cancer for a change. Great idea to invite her to this site. I look forward to “hearing” from her here. We all can benefit from info about others fighting this disease.
Linda Z.
Hans and Kris,
I’ve read through a number of your past postings to hear your story. The thing that comes through the most is your fighting will to get through anything. That has been a tremendous encouragement to me in my down times. Sorry to hear about your latest set-back, but I’m praying for all of you (the kitties too!) to be out of the hospital and back together soon.
Linda Z.
