carm

Hi carm! I saw you referred another member's blog to another member and am hoping you may be able to do the same for me. Do you know of anyone blogging or sharing their experience with DC Vax clinical trial (gbm)? Thank you!

thank you for your information on using a dilator - I ordered the cool cones today - my radiation doctor didn't even talk about using one - all he asked if i was sexually active and i said no and then he said if i were to have sex again that it would be painful- the gyno nurse at the Fred Hutchinson Cancer Ctr said I should use one so I can have my pelvic exams but didn't give any info about using them

Hi...I've been reading about what to do to avoid reactions to the Taxol. I'm still waiting for surgery, so I don't know for sure what stage yet, or whether I'll need chemo or not. I'm anticipating the need, because the biopsy showed a grade 3 tumor, and according to what I've read, it tends to correspond to a stage III. Anyway, my question is, do you know of anything else that does the same as the Claritin? I'm allergic. Also, do you know of any special concerns I need to know about the common chemo drugs as a gastric by-pass patient? Thanks for you answers.

HI Carm...Just wondering if you could answer some questions for me. Does exercising cause the lymph fluid to travel through the lymph vessels faster, which could cause cancer to move from one lymph node to another faster than not exercising? Also, would acupuncture also cause the lymph fluid to be released from the lymph node into the lymph glands to spread faster?

Thanks so much!
Tammy

I read one of your posts to someone, and everything you said was helpful, but I took one thing away more than another, and that was trying to separate out my role as a caregiver and not forget to be a wife. It was a moment of epiphany and I realized I was forgetting to be a wife in my obsessiveness to make sure he was comfortable and safe. So, thank you for reminding me that I have other functions as a human being including being a mother and grandmother. It will be easy to slip back into only thinking about how my husband is feeling, so I will work on my awareness. Thank you

I have poorly differentiated high grade neuroendocrine carcinoma. It started out in two lymph nodes in my armpit. I went through, chemo, radiation and then surgery to remove what was left of tumor. Was cancer free for five months. Just found out in feb that it is back in one lymph node below my kidney. My dr sent my tumor tissue to Foundation One for genetic testing. I have five genetic mutations. Two of the mutations have the same recommended chemo treatment. I started afinitor one month ago with minimal side effects so far. If the afinitor doesnt stop the spread of this nasty cancer, i am looking at clinical trials. Does anyone know of any relevant clinical trials for this type of cancer? I feel like i am the only person in the world battling my specific kind of cancer! Noone responds to posts i post on various cancer websites.... I am 47, i have a six year old son and i am terrified! Its so hard to believe that with only one lymph node, that my situation would be so grim (in the words of my doctor).
I have the following mutations:
-PIK3cg
-pten
-tp53
-notch1

Thank you so much for your response, Carm. When I was told about this node, my first response to my doctor was, " we'll, we do what we have to do!" And that is exactly how I felt. Then I started reading and the more I read, the worse it got. Thank you so very much for your words. You have no idea how encouraging they were to me because I just needed a ray of sunshine to shine down and remind me that I can fight this fight. Again, thank you.

Hello Carm,
My PET/CT shows that below my diaphragm there has been interval enlargement of necrotic aortocaval node with hypermetobolic activity SUV Max 5.5 suspicious for metastatic tumor. In addition it states that my left lower uterus has asymmetric nonspecific low level moderate hypermetobolic activity SUV Max 3.6 without discrete mass, more likely physiologic or inflammatory related to radiation effect.
My oncologist has scheduled a CT for a guided needle biopsy on Tuesday. However, he has not mentioned my uterus...I'm assuming because the node is the primary concern at this point. He stated that once we get the results of the biopsy that we would discuss my course of treatment and whether it would be another round of chemo and radiation or if we would just monitor it. I'm definitely one to analyze and read into everything but it sounds to me as though he is saying chemo and radiation as a palliative treatment? Or, why would my other option be to monitor it?
Is this treatable?

I was recently told no evidence of disease on my lung cancer stage IV. I was on cloude nine. Now I'm so tired and just want to sleep I think I am coming down with a cold but is this normal?Shouldnt I still be on cloude nine I'm still watching every sign my body gives me.

Ovarian Cancer reoccurrence. My CA 125 went from 66 to 320 in 3 months. Pre-surgery (3/12), my CA 125 was 359. Going to see Onc Gyno Surgeon for second kind. What are some good questions to ask her tomorrow? Oncologist had said that the CA 125 is more than a "predictability tool." What are your thoughts on this? I think I should start chemo ASAP. Thank you for your response.

Hi Carm, I am just a little scared the doctors give it to you straight . I like that just a little had to handle sometime . Life expectancy is not too long, but I believe in miracles.

carmi lost your email and all hadnt heard from you Wanda here

Hi carm, my numbers went from 13 to30 to 59 within 3 and a half months after my last chemo. My doc said she can't do the same chemo again and has put me on a different second line regime. What does this mean? Can I ever have the stronger chemo again? Is this cancer going to progress faster than hoped?

Hi carm, I went to Sloan and had a total robotic hysterectomy. They say the cancer was confined to the uterus. Nodes clean, etc. However because it was grade 3 they want to do radiation. What will they irradiate? The nurse sounded very happy but i can see from the experiences on here that good news can turn to bad in a flash. They say no chemo. I want a second opinion from Anderson. This disease is a monster. I thought if caught early it was very treatable but after reading so many stories on here, I'm not so sure!

Hello Carm... I just happened to spot your name and location on this site and I see you live in Niles (IL).... I'm just up the road in Cary, IL. Thank you for posting and your willingness to help others when their time is getting close. Both my Mom and Dad died of cancers, and they were both in home based Hospice. I totally support hospice as I think it is wonderful for both the patient and family.. and it helps them through a terrible and stressful time in their life.

My story... 60 years old.. diagnosed last April (2013) with Limited Small Cell Lung Cancer. After 6 rounds of chemo and 30 radiation treatments (TWICE a Day!)... I have been in remission since September. I basically get tested with some sort of screening every 6 weeks and then see the Oncologist. So far I've been really lucky.

I really don't have any questions, but basically just wanted to say hello. God Bless! ................Mary Ann

Hello Carm,
I also am a nurse that worked with oncology, that is one reason that this has been so difficult for me. I watched the different treatments that were given and also learned that Cancer has no age, race, or religion. Thank you for being so open with us. I still have times of anger, and times I cry. We all ask the proverbial WHY ME? WHY NOW? This has truly been an overwhelming journey. I have battled and won against 3 cancers... Breast, kidney, and thyroid. It still is unbelievable. Especially, knowing the nursing side of each of my cancers.

Thank You again for last night. Although still in shock and upset, I think she has a better understanding of what's going on. You taught her some stuff she didn’t know. Plus I got to talk to you for a while which I thoroughly enjoyed. I’ll keep you posted on my mother-in-laws process. I think once Lisa moves past the shock of knowing her Mom has cancer, I think she’ll be able to focus on the fact that everything really will be ok.

Hello My Friend, I was hoping I could get some information from you. My wife just found out a few hours ago that her Mom has breast cancer. IBC Stage I Grade I. My wife is in a panic and I told her to let me gather the info for her she needs. We really don't know anything else about what she has or how treatable it is. I appreciate any information you can send. Thank You....Jimmy

Diphenhydramine Hydrochloride, it's the active ingredient in Benadryl. Actually it is Benadryl, which is simply easier to say. I like the 10mg tab which I just split in two and I take 1/2 or just 5 mg. CVS just quit carrying the tab so now I'm going to have to shop around. I took the 25 mg. capsule, and spent the rest of the next day trying to wake up.

Hello Carm, I was just wondering, in all of your interactions with people who have had chemo of all kinds, is there a connection with increased muscle and joint pain, like a year and a half after treatment is finished? I had intense chemo meds with a bone marrow transplant in July 2012, and the symptoms seems worse now than when I first got home, where it was mostly weakness. Now I have muscle pain, in thighs mostly, going from sitting to standing. Also shoulder pain, and my hands have lost strength, and it is hard to grasp, and painful in those joints as well...Doctor says I am doing well, but I don't understand why I am not feeling it. On the outside, I look like I am not ill, but it is hard to make people understand that I am still not 100%...Will chemo cause this kind of reaction so long after it had ended? Do I need to exercise more, like everyone says? It's hard to do when things are hurting...I am pretty sedentary during the day, but even with walking, it continues to bother me...thanks for any advice you could help me with...Vickie

Carm,
What beautiful writing skills you have. Articulate, yet soft. A gift.

I have treatment every 28 days. Thanks for help. I know about hand/foot so the doctor backed up my dosage, didn't expect this rash all over

Carm, is a rapid heart rate a result of Neulasta?

Sorry I meant Vagifem which when I looked it up it was just another brand of Estring and Estrace so they all must be estradiol. Should I be worried?

Hi. Thank you for the estrogen info. Actually my onco prescribed vagueness 10 mcg tablets for twice a week. It is 10 mcg estradiol! Not estrace cream! Is this bad?

Hello Carm ,Are you familiar with a doctor howard Buchner in new York and his method of chemo/ I hear he has onger periods between chemo resistance.
Also what about rfa for pancreatic liver tumors that are in the right lobe
Thanks for any info,Hope your Holiday was great!
Country

Thank you for your beautiful message. Growth is unavoidable when living with cancer, God is good. I have a LOT of good in my life.

Happy Thanksgiving and God bless.

Carm, I don't know how to see your email, but I thought you could help so I'm writing on your wall. To make a sad story short, John is in the hospital for bowel obstruction. His, what I now know as, coliky colon, has progressively gotten worse. His CEA is up and chemo's not helping. Drs want hospice but think there may be another protein based chemo that may help. According to the literature I read the bowel obstruction is an end of the journey roadmarker that you don't get back to thrive from. If fixed, it just gets worse in a shorter amount of time. Is this true? We aren't getting a straight answer from the doc. The literature also says surgery doesn't have any significance in prolonging life, but the literature I'm reading is 20 years old (Annals of Onocology from 1993). I can't find anything more recent on Google.....He is currently with ng tube and while he's now been able to pass 2 'dead small animals' the doctors aren't happy as he also is suffering from c-diff and inflamed small and large intestine. What should we expect? Is now the time for hospice? John's specifically stated he's not ready for it.

Dear Carm,
Thank you for that message and information. I sent you a reply back and your right in everything you said. God Bless You for taking the time to reply and see that I do need honest feedback at this time and also a swift kick to get it together at times, for that I say thank you. I look forward to communicating with you always. Merry christmas to an angel from above.