it is in spine , brain, liver,lungs, spleen,both femurs,and bone marrow,adrenal gland,subcutaneous in abdomen, back, leg.Has had exactly 2 years. first tumor on head,calarks stage 4,sentinnel lymph node clean. Then tumors developed in neck,lymph nodes positive, 21 removed some negative, fully encapsulated,got 1 month radiation to left neck and head. 5 months later hip broke,metasticized to femur and marrow,pt/cts clean at that time,got 2 weeks femur radiation then 4 Yervoy treatments,BRAF negative, end of 2 1/2 months later speech and cognitive problems,large tumor and swelling in left brain, stereotactic radiation, new scans reveal in almost all parts of body, 3 weeks later scans show tumors all grew in spite of radiation and yervoy.Been on Temodar for almost 2 months, all blood # low, very weak, constant sleeping, getting new scan results tomorrow,terrified, any feedback will be appreciated, patient(husband)is only 55 years old. Loving wife and caregiver
Firstly I really sympathize with the situation your husband is in. It is extremely difficult to deal with this condition.
In terms of Temodar ... I don't know of anyone who has taken it but the link below has a few reviews which you may find useful.
Oh fishtank I am so sorry for what your going through I hope you have some help. I honestly can't answer about that specific medication pleas call the American cancer society the number is listed in every phone book. When my dad was going through his long cancer and we realized that it metastisized into his liver and stomach. His blood counts was already low b4 the radiation and chemo do to prior treatments for hep C. For 2 years he took interferon for hep c his platelets dropped to 19,000 his red and white was low as well after the 2 years they told him he was cured of the hep C. 3monthes later a chest x-ray revealed lung cancer. The rigal doctor told him he was stage 2 at that time put him on chemo and told him to talk to radiation dr to start on that the radiation dr said the cancer dr was wrong it was stage for.
Honestly I didn't want him to continue treatments do to the blood counts in the first place. The American cancer society said that they would him a yr. To keep him as comfortable as we could. At that time my dad was still able to walk around and eat with us and enjoy even watching the grandkids play at the park. My brother sisters and mom wanted him to d the chem and radiation they had faith it would help. So he did within 3monthes after starting the treatments he was bed ridden and no longer eating a lot of solid foods we blended foods tried to give him soups and puddings and such . the. a.c.s said give him anything to keep him from loosing weight whipped creams and cakes whatever he wanted when I first called so that's what we did. He had to be put on liquid morphine for the pain once bed ridden and we got help from hospice to help within 4monthes of treatment my dad passed on. S I know how hard it is when a loved one is sick. I helped my dad through the hep C then the cancer. I know how hard it is for him and even on you to see him and help him through a nasty disease so please take care of yourself as well. Hope you have something and someone to help you through the stress and anxiety. And you are eating well and keeping your body strong. S you can not only help him but you to I was a wreck for years I believe I still em. My dad passed 8 yrs ago while he went through his therapies I thought I didn't need to worry about me just him and it tore me down. I just now am getting help for myself. Sweety I hope everything goes well and I don't wanna be a downer and make this sadder than it already is but enjoy the god days as much as you can, make sure you say everything yu want to him s you have no regrets and he gets a chance for u. I know he don't have to say he loves you I'm sure you know that. And I'm sure he knows how much you do him. Make sure he's not in pain and keep him comfortable. And please if you don't already have help to take care f him and yourself get some... I have you as a friend and you can private message anytime whether you need t vent for anger or cry on a shoulder or hopefully something good happened that day feel free I'm here you are not alone. Your friend. Jaime} litlmommag
Please know you are not alone! My 63 year old husband has Stage IV Small Cell Lung Cancer, with brain mets. By the time we knew anything was wrong (manifested by a seizure in Sept. 2009), the cancer had spread to his lungs, adrenal gland, spine, and lymph nodes. The night they took the first CT scan they stopped counting tumors at 13, with 3 being life threatening. The dr. in the E.R. told us we needed to get our affairs in order immediately, within the next three weeks. So... that said... here we are 26 months later!!
We had 24 rounds of chemo, starting with six rounds of Carboplatin with Etoposide. Intermittent CyberKnife treatments to the brain and spine. Then 18 rounds of Topotecan. When the Topotecan became ineffective, we took a month off during which time two brain tumors recurred. Could not have more CyberKnife due to prior treatment to the same two areas. Our oncologist prescribed Temodar. We've taken one 5 day round of 410mg, took off 23 days, then just finished another 5 day run.
He is very fatigued, but that has been a continual problem. I do notice more memory loss and confusion. However, we're still engaging in cognizant conversation in between sleep cycles. We are doing three cycles before scans. I know by now you've had your scans. Please let me know how you and your husband are faring. It's so hard to sit patiently and wait to see if these chemo treatments work and the scans seem too far between and too few.
I am also a loving wife and caregiver of a 45 year old man with stage 4 melanoma. We are on year 5 since diagnosis. He has it in the lower spine and has moved its way up also has it in lungs and mesentary (sp) of stomache lining. His first round of treatment was radiation of lower spine and temador. It worked for a while - shrunk the spots in lungs but eventually he had a new accurance under his right lung that they could remove surgicaly. What i a learning from this disease that treatments will work for so long. He had neurosurgery in October and radiation but did not stop growth or diability. Started Zelboraf in Jan. This drug is harder to take than temodar. More side effects.
Good luck and please let me know how he does.
- Temodar Information for Consumers
- Temodar Information for Healthcare Professionals (includes dosage details)
- Side Effects of Temodar (detailed)
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