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16 Goodwill
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rocketman
St Paul, MN
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Patient: Kidney Cancer > Renal Cell Carcinoma > Clear CellPatient Info: Currently in active treatment (initial surgery, receiving chemo rounds/radiation), Diagnosed: 11 months ago, Male, Age: 55, Stage IV





Experience 2 months ago
rocketman
Drug or Chemo Therapy (Chemotherapy): I started taking axitinib yesterday, it is an oral chemo treatment for kidney cancer.
Experience 2 months ago
rocketman
Decision Point
Experience 2 months ago
rocketman
Decision Point
Experience 2 months ago
rocketman
Decision Point: Another decision to make. My oncologist wants me to start taking axitinib an oral chemo treatment for kidney cancer. It has only been approved by the FDA for two or three months. Of course, it does come with side effects.
New Follow 2 months ago
rocketman
is following I have been prescribed axitinib for a new oral chemo treatment. Does anyone have experience with this treatment? What have been the side effects you have experienced?
Question 2 months ago
rocketman posted a questionKidney Cancer
I have been prescribed axitinib for a new oral chemo treatment. Does anyone have experience with this treatment? What have been the side effects you have experienced?
Experience 3 months ago
rocketman
Oh No (Increasing symptoms.): The CT in January showed the tumors in my lungs continued to shrink. However, my cough is more prominent and it is harder to breathe. I called my care coordinater at the oncologists and they had me come in early for another CT. It wasn't supposed to be until the 20th of March. The new CTshows the tumors are stable. But, the dr. thinks something must be happening to cause the change in symptoms. He is going to start me on oral axinitib, because he says I am not ready for IL2 at this time. We might go back to IL2 at some point in the future. However, it means no remission or cure for now.
Experience 3 months ago
rocketman
Decision Point: IL2 continued to shrink the tumors in my lungs at my CT in mid January. However, symptoms seem to be increasing. My oncolosist thinks that something is happening with the cancer. He is starting me on oral axinitib. So, no cure or complete remission at this point. We might go back to IL2 at some point. He says I am not ready for IL2 now.
Experience 3 months ago
rocketman
Side Effects (Weight gain): IL2's side effects are pretty extensive. However, they disappear as soon as the last dose is infused. The only one that continues afterwards is the weight gain. It, also, goes away with-in a week.
Experience 3 months ago
rocketman
Drug or Chemo Therapy (Chemotherapy): We chose IL2, and started it in October. The first cycle went well with 12 doses,the second cycle not so well only 3 doses. The CT scan between cycle 2 and 3 showed positive results, shrinking tumors in my lungs. We pushed to get cycles 3 & 4 complete by the end of the year to save on out of pocket medical expenses. Cycles 3 & 4 went well, with more time between them. I took a total of 32 doses.
Experience 3 months ago
rocketman
Decision Point: What type of chemotherapy to take? Oral or intavenous? Interleukin2 or Sutent. IL2 has major side effects. But, it offers the possibility of complete remission and cure. The oncologist feels I have a good chance of being cured with IL2.
Question 3 months ago
rocketman posted a questionKidney Cancer
CT and follow up on 3/1/2012
Answered Question 3 months ago
drummerboy answered
Keep your head up, spirits up, it could be nothing, or bronchitis or..could be something worse, but don't worry about it until there is something to really worry about. Easy to say, I know, but I have been where your at several times, most times, it wasnt something bad. I'm glad your wife is going, she wants to be involved I'm sure. Good luck in your scan, think happy thoughts, and I wish you the BEST!!
Answered Question 3 months ago
julius answered
I'm glad your wife is going with also---it hasn't been easy for me either sharing the information with my wife about any of my treatments especially the prognosis----- plus I have always put on the strong act in any thing we encountered so its hard to show her how scared I am--but were in this together
Answered Question 3 months ago
shauna0915 answered
I'm glad to see you are going to the doctor sooner and that your wife is going with you. Please don't cut her out of your treatment now. This is affecting her as much as you. Cancer sucks and it affects everyone around you. You have to keep her in the loop so she knows if something is different going on and can help get you to the doctor if necessary.
This part is also for Julius: So many time I've read comments and responses about how cancer fighters "put on a strong face" and act like they aren't scared. PLEASE STOP IT! Don't you understand that we are here to help and are just as scared as you are. Telling someone you love that you aren't scared and that everything will be okay just makes it that much harder when something really bad does happen. It is your fight and your right to fall apart and scream and cry, but it's ours too...in a different way. Women are a lot stronger than we are given credit for. By nature, we are caregivers and nurturers. Please tell your partners everything and let them be a part of all of it. It really helps us cope too. Had I not been a primary part of my fathers care I would have gone completely insane with worry and fear.
I wish you all the best in your journey and will pray for the best outcome for you all.
Update 3 months ago
rocketman posted an update
I called the oncologist, my CT and follow-up have been moved to March 1st. My wife is coming with me to the appointments. Thanks to everyone that responded to my earlier question.
Experience 3 months ago
rocketman
Procedure or Surgery (Surgery): My left kidney was removed via laproscopy on July 28th.
New Follow 3 months ago
rocketman
is following How do you talk about worsening symptoms?
Question 3 months ago
rocketman posted a questionKidney Cancer
How do you talk about worsening symptoms?
Answered Question 3 months ago
PhillieG answered
I would call ASAP to let them know and if your wife has been with you all the way, I don't suggest cutting her off now. Maybe call, make appointment, then tell her if you think that to be best.
Hopefully it's nothing serious...
-phil
Answered Question 3 months ago
susie81610 answered
HI:
If things take a change I usually call my oncologist and in to see her either that day or the next don't wait around doesn't do good for the body or the mind. I choose to go to my Dr appts alone unless I know something real important needs to be discussed where I need another brain. This is a family effort but in the end what I do is up to me. I won't lie to my family but I like to know first. Selfish maybe but to me it is still control!
Have a happy tomorrow. Go to the Drs.
Susie
Answered Question 3 months ago
StephMooneyham answered
I would definitely get an appointment with your oncologist as soon as possible. That was how they discovered my cancer had came back and metastasized this time. I was supposed to have a regular checkup in mid-January, but I'd started experiencing worsening symptoms before than and just knew something was wrong, so I came in earlier to see what was going on.
I know it's hard to do this when you have loved ones you want to protect; I'm the exact same way because I know it's putting so much stress on them. But when it comes down to it you have to put yourself first at times like these. You don't want things to get worse than they already are.
Question 3 months ago
rocketman posted a questionKidney Cancer
Anyone who has had more than 4 cycles of Interleukin 2?
Answered Question 3 months ago
DaveWaz answered
Hi rocketman,
I see that you are still waiting for some feedback on this. We'll see if we can find someone with experience to weigh in.
Thanks.
Experience 3 months ago
rocketman
Oh No (Diagnosed): Life's journey took a huge turn for us in July. I was diagnosed with stage IV kidney cancer on July 7, 2011.
Wall Post 3 months ago
DaveWaz wrote on rocketman's wall
Welcome. Thank you for taking the time to register. I know we have several people on the network with kidney cancer experience so when you are ready please do not hesitate to reach out to them. They are here for the same reasons you are.
If you need anything (e.g., emotional support, help finding support/care resources, insights as to what to expect), please be sure to ask the network for help. You can do this by clicking on the "Ask Network" link on your logged in home page or the "Questions" link at the top of this page. When you post needs/questions using our question feature, we route your question to everyone in the network who might be able to help. Also, know you can use the "Update" feature on the site to keep anyone who might be following you on WhatNext up to date.
I look forward to reading about your progress.
- David, Founder, WhatNext
New Follow 3 months ago
rocketman
is following KarenG_WN