mcwgoat
Forum Replies Created
-
Posts
-
Dear Sandie,
I’m sorry to hear this news. This cancer just never seems to quit but thankfully you’re a fighter and will give it all you’ve got. And your friends here will be praying for you and sending positive vibes your way.
I had gemcitabine alone and it lowered my white count so much that they had to keep lowering the dose until it got to the point where the dose became ineffective. So I had to stop it after seven treatments. At a different time, I had a platin – Oxaliplatin with 5-FU and Leucovorin – 12 treatments. Around the eighth treatment I had an allergic reaction to the Oxaliplatin – itching and redness on face, scalp and hands. They decided to infuse it slowly with Benadryl and I continued on to complete the 12 treatments with no other allergic reactions. I do remember that I had to get neupogen shots due to low counts throughout this treatment. I’m not sure if cisplatin has the same affect as Oxaliplatin.
I will keep you in my prayers.
Stay strong!!!
MaryMy condolences to you on the death of your husband, Jeff. He was way to young to leave this world – my heart goes out to you for your loss. He sounds like he pushed the limits and kept moving on in face of the odds that were against him. I believe attitude is everything and is probably why he lived well with this horrible disease for two years.
You are in my thoughts and prayers.
Peace & Love,
MaryRegina,
Ignore my question above. I just realized you’re in the MEK/Pazopanib clinical trial. Sorry chemo brain!
Peace,
MaryThanks for the clarification Regina. Are you on cabo as part of a clinical trial or just as a chemo med? I’ll have to ask my doctor if that would be something worthwhile for me if/when the Paclitaxel stops working. Thanks for the info.
Ladies, Regarding wigs…the American cancer society gives them to you for free. They also give head coverings. You can call the ACS 800 number, or go online to find an office by you. I had to call the one by me for an appt. They were really nice. I got two head coverings – didn’t want to go the wig route but she kept asking me if I was sure I didn’t want a wig. I don’t know what the limit is on how many wigs you can get.
Peace,
MaryNot sure why the rest of my post is missing. It was a very long post but only half of it posted.
If can’t remember all of it bit two important items…
Regina, regarding your sense of humor – I love it having my own Irish black humor! Humor has gotten me through a lot of heartache in my life.
Kris, in regards to the acne head and hair thinning…I started using a shampoo and conditioner called Nioxin. It’s a hair thinning shampoo but my daughter read it was good for acne/ sores on the scalp. I decided to try it since I was having issues with scalp sores after my Paclitaxel treatments. I don’t know if it’s a coincidence or not but my hair started growing back. I don’t know if you remember, but when you met me I had lost a lot of my hair. I lost a lot more after that and I swear my hair is growing back since using this shampoo. I bought it in a store called Ulta. Not sure if it’s in your area. It’s also online but my daughter read it wasn’t good to buy online. Sorry chemo brain so I can’t remember the reasoning behind that. If you want to try it, and have trouble finding it in your area,I can certainly buy it and mail it to you.
There was more on my post that wasn’t posted above but that’s all I can remember.
Be well ladies, stay strong!!! Once again thank you for sharing your stories regarding your clinical trials. I hope to see many more good news posts from the both of you!!!
Take care,
MaryHi Regina,
Yes I understood what you were saying. That would be nice if Sloan would pay for my genetic testing if my insurance wouldn’t. That was the one thing my doctor mentioned about the possibility of my insurance not paying. She didn’t see the clinical trial as a problem regarding payment from my insurance. As you mentioned, and so did my doctor, that sometimes if you get in a clinical trial they may want to do the gene testing and therefore might pay for it. That would be great!!!
There are always some side effects to all drugs, but why do we have to endure acne at our age!!!
Regina,
I see Dr. Maeve Lowery. She is in Dr. O’Reilly’s group. I am very happy with her. She is attentive and open to all conversations, gives me the time I need to discuss everything and anything on my mind. She is also up on all the trials and and happily discusses them with me. She’s always thinking of next steps and keeps me informed.
I was aware of having to be off current treatment for four weeks before starting the clinical trial. Most trials require that but Dr. Lowery didn’t see that as a big issue for the Sloan Phase I trials or the General Mass trial. My main issue, for the General Mass trial, is that I’ve been on more that two chemo regimens, but as I said she said we may be able to work around that.
My insurance would probably pay for the clinical trial because I would go into it because current treatment stopped working. But Dr. Lowery said they may not pay for the biopsy for the next generation gene sequence. If I get that done, we’ll check with them first to see what they say and then go from there. I’m not going to let an insurance company decide my fate. So if it’s something my doctor thinks strongly I should do, I will work something out with or without the insurance company.
I agree with you, it is good to discuss these things with your doctor and be on their radar. We have to be our own advocate and that is why this website is so important. I have gathered so much info thanks to the moderators and all the people, like you, that kindly share there stories here. I want to pay it forward and also share my treatment plans and possible options in hope of helping others.
Stay strong Regina and I will pray and send positive vibes your way for this trial to work for you. Thanks again for sharing your story.
Peace, Love & Hope.
Hey Gavin,
I spoke to my doctor today regarding this trial. Once again I want to thank you for bring it to my attention.
Since the Paclitaxel is still working for me – keeping me stable as of last CT scan on 9/4, I’m not currently eligible for a clinical trial. My next scan will be the first week in December and if there is any tumor growth or new tumors, I would be eligible for a clinical trial. Sloan has a number of trials in Phase I right now with inhibitors that I could be eligible for. My doctor said I could also be eligible for the Phase II trial at General Mass – Cabozantinib. One problem for me might be that I’ve had more than two different chemo regimens. The study says for patients with progression on first or second line systemic therapy. But my doctor said there may be ways to work around that. She would be willing to call the doctor in charge of this trial at General Mass to see if I could be eligible if my December CT scan shows tumor growth or new tumors.
So I’ll continue on the Paclitaxel and await my next scan, first week in December and see what the results are. It was good to talk about other options if/when the Paclitaxel stops working. I know it’s likely that at some point down the road it will stop working. That’s just the nature of the beast with this disease. So as I said, it’s good to know of these other options. We also spoke of the next generation gene sequence and the possibility of doing a biopsy on me to get enough tissue to do this. They tried with my biopsy tissue from 2011 that they still had but there was not enough tissue. So that’s another possibility also. There is insurance problems with this if they try to do while I’m still stable. They probably won’t pay for it. So another hurdle I might have to overcome but will cross that bridge when I come to it.
Thanks again for keeping us informed.
Peace & Love,
MaryHi Regina,
That is good news!!! I hope the Clindomycin helps with the acne and the Immodium with diarrhea. I also hope you get moved to Hopkins since it is so much closer to home for you.
I’m not eligible for a lot of trials because of previous chemos I’ve had. But I talked to my doctor today about a trial at General Mass that looks good for me. I’m currently being treated at Memorial Sloan Kettering and am being treated with Paclitaxel. It is keeping the tumors stable as of last CT scan on 9/4 which is good news but also means I can’t go on a clinical trial because of that. My next scan will be the first week in December and if there is any tumor growth or new tumors, I would be eligible for a clinical trial. Sloan has a number of trials in Phase I right now with inhibitors that I could be eligible for. My doctor said I could also be eligible for the Phase II trial at General Mass – Cabozantinib. One problem for me might be that I’ve had more than two different chemo regimens. The study says for patients with progression on first or second line systemic therapy. But my doctor said there may be ways to work around that. She would be willing to call the doctor in charge of this trial at General Mass to see if I could be eligible if my December CT scan shows tumor growth or new tumors.
Please continue to update us on your progress. It’s so nice to hear from you and Kris (also doing well on a clinical trial) on your great progress with your clinical trials. It gives me hope for the future with this horrible disease.
Thank you for sharing.
Peace & Love,
MaryHi Jules,
Very nice story. Inspiring and gives me some things to think about.
Thanks for sharing.
Peace,
MaryPercy,
You are relentless in your desire to help others while you are dealing with the same horrible disease. I can’t thank you enough for all the info you have passed on to us.
Thank you from the bottom of my heart.
Peace & Love,
MaryBetsy,
I am so sorry for what you are going through with your daughter. It sounds like she has been through so much the last four years. I am a little over two years with my diagnosis, and although I am doing well in some respects, I get so angry sometimes that I just shutdown emotionally. When hit with a disease like this it’s hard to stay positive all the time. And with what your daughter has been through, the difficulty for her is immense.
That being said, as a caregiver, you have to take care of yourself. I’m sure, as a caregiver, have your own set of issues with anger and sadness for seeing your daughter go through this – and for four years – I can’t even begin to imagine dealing with all those issues she has had. My heart breaks for all of you. I hope some of the caregivers on this website will respond to your post and let you know how they deal with the ups and downs of their feelings while they care for a loved one with this horrible disease.
My heart goes out to you and I wish you peace and love in your family.
Mary
Lisa,
I’m sorry to hear the news was not good. You are in my prayers for both the conversation you have to have with your parents and the decisions you have to make regarding treatment.
I know what you mean about feeling like your brain is working at half speed. Once you can gather your thoughts, and look at your notes, maybe you can see if the procedure they’re planning for Friday or Monday can be put on hold while you get a second opinion. Once you go over your notes you may have a lot more questions. If that turns out to be the case, call Dr. Goldstein’s office and see if you can talk to him. That may help you make a decision.
My thoughts and prayers are with you.
Peace,
MaryBarbara,
Thank you so much for bringing awareness and funding to this terrible disease. You could have mourned the loss of your beloved, Jacques and moved on with your life without being involved with this foundation anymore. But you chose to fight for all of us and I thank you from the bottom of my heart for doing this.
You are one amazing woman!
Peace & Love,
Mary
