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marti152's Message Board Messages

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Thank you so much for your reply. CAn you tell me what your original outlook was when diagnosed? Did they stage your cancer? What kind of treatments have you had?  Thank you so much. It is very rare to find someone with this disease. Thank

you. 

Is there anyone on this board who can tell me what the T Cell variant of Non Hodgkin's Lymphoma means? I find lots of info on Non Hodgkin's Lymphoma but hardly anything on the T cell variant and exactly what it means regarding the disease. Thank you. 

I just wanted to comment that I too had the same surgery for stage 3b lung cancer. I have had no treatment afterwards because they said lymph nodes came back clear and the tumor board decided that it causes more complications to do mop up chemo and radiation that it cures. So the good news is I hit my five year mark next months and I am ecstatic. 

I was home after four days and I was for the most part fine. I could not bend from the waist down though. I came home with drain tube and that tube drove me crazy. 

I went through the same thing with bra and only recently have been able to wear one all day. But i have lost 20 pounds. I ended up buying those comfort bras because of really soft bands and I stitched up the shoulders tighter because they have no support really but the girls needed a bit higher view of the world. Those I can wear but oh, under my breast and my drain tube drove me crazy. Not pain, just irritation. I also have incision under my armpit and on my back.

I too did the pulmonary exam and the heart exam. Surgeon told me up front he would not do surgery if I did not meet certain critieria beause for this surgery, you have got to be able to breath without any complitcations. COPD is what he was referring to. 

So, all in all, for these past five years I have gone at the required intervals for my ct scans and I have been clean which is always good news.

I wish you well in your recovery and yes, I consider myself very very lucky. 

I wish you success in your search for a "comfort" bra. Take care.    

RE: Melanoma help

by marti152 - November 11, 2018

This is a website that lists all university medical center clinical trials. http://www.uhhospitals.org/clinical-research/for-patients Most University hospitals in each state and across the country are Connected and each one is a wealth of information. University doctors are very knowledgeable and skilled. . Also, university medical centers take all insurance and if you do not have insurance They will take you. You also do not have to have to have a referral. But it is major important to have your records. Referrals are good but not mandatory. Hope this information is helpful.

I was 66 when diagnosed with lung cancer. My mother and father, sister, husband and three aunts died of it. All smokers. I smoked for 50 yrs. Quit just before my diagnosis but not because I even suspected I had cancer. Mostly because I did not want to be that old wrinkled up prune looking for a cigarette cause I was going through withdrawl because future care takers would not let me smoke. I found out because I had the yearly tests. My dr called and told me test results, scheduled to see thoracic surgeon who scheduled me for PET, MRI, CT scan, blood tests, cardiologist and pulmonary specialist to check for emphysema and after all of that we did biopsy. Decision was to do surgery because biopsy was inconclusive and with history of cancer, let's do it. I knew all about end of life, last wishes, radiation and chemo and large cell and small cell and you have six months to go etc. Terror is the word that comes to mind. But I did all the test and went back to see thoracic surgeon. He explained that surgery is always the best first option if a doctor offers it to you. He said I am offerting it to you. I can do Dec 21, I do DaVinci Robotic surgery, you with me. I said let's do it. Between that date and surgery date, about 3 weeks, I called UCSF and had a consult appt with their head of thoracic surgery and had a sit down visit with him for over an hour. After that I decided to have the surgery.  I advised my surgeon that yes, I was going to do it. I cannot tell you the paralyzing fear that encompassed me. I could barely speak. Sheer terror. Not so much at the surgery but at the out come. I have had plenty of surgery. We did the surgery. It took about four hours. They took the lymph nodes and all the biopsies whie in surgery and got results while in surgery so they would know if they needed to cut wider margins. I had two spots removed and 12 lymph nodes under my arm removed. The cancer was staged at 3B adenocarcinoma, my lymph nodes were clear. I was out of hospital in three days and I was home cleaning house and cooking my own meals. I could not bend from waist because of drain tube but other than that I was totally functional. I went back for six wee check up and tumor board (where are cancer goes for discussion at every hospital) decided no mop up chemo or radiation. I was stunned. They said it has been proven to cause more problems than not. So, I did the every three month scan and then six then nine then a year. This Dec will be five years.  I say all this to say I too thought what for, everyone in my family has died of cancer and I have watched the radiation and chemo and the immune therapy with the pills. But bottom line is yes, I wanted to live and if this was a chance I was going to take it. I have been cancer free for five years in Dec. I have not smoked for longer than that since I quit before Dec. I am not 71. One puff and I would be a smoker again. So, things have changed a great deal since I have been wathing my relatives die of lung cancer since the 80's.  Sharing in hopes that it may make the journey a little bit better for you. My best. Take care. 

Good morning. I know your stress and fear.  Since they found the nodule, it is good that they are going to do the PET/CT. Lung cancer is slow growing. You can get lung cancer because you have lungs. I do not know whether Juul contributed to the situation but it could be aggravating it. Probably best to stop though. My lung cancer was found early. I had same test and then after I had the CT and the PET, I had the biopsy. My best suggestion is: this is stressful. Baby yourself, don't blame yourself. Do not let your head get ahead of yourself. One step at a time. When all the tests are done, and they give you the results, take someone with you. For the time being, just get from one test to the other and try not to panic. This group is a life saver and helped me through many questions and stressful moments. Keep in mind that the early diagnosis is invaluable. I had surgery and I have been in remission for five years.   Hang in there. Peace. 

I am so sorry to hear about your sister.  I don't think even if you brought her here to the states she would be able to get on medi cal because she has to have the legal right to work in this country before she can qualify. They ask if you are a citizen and if you mark no then they ask you if you have the legal right to work in this country. I don't know if you could bring her here on a visa with work permit and then she could go to dr and answer the question yes she has visa that allows her to work. Might be something to check into though. You could also check the Cancer Society in NZ and see what they can offer. I wish I had something concrete to tell you but alas, I do not.  I would be glad to help you research if you like. Being so far away is painful for you I am sure. Please take care and my best for both you and your sister. 

I am so sorry to hear about your sister.  I don't think even if you brought her here to the states she would be able to get on medi cal because she has to have the legal right to work in this country before she can qualify. They ask if you are a citizen and if you mark no then they ask you if you have the legal right to work in this country. I don't know if you could bring her here on a visa with work permit and then she could go to dr and answer the question yes she has visa that allows her to work. Might be something to check into though. You could also check the Cancer Society in NZ and see what they can offer. I wish I had something concrete to tell you but alas, I do not.  I would be glad to help you research if you like. Being so far away is painful for you I am sure. Please take care and my best for both you and your sister. 

I too have had colon cancer and same thing, called same day as results to have have surgery now. I stalled to get the consult and the UCSF oncologist said surgery is always the best first option. If you can have it, do it. When they cannot offer you surgery as a first option, then we have problems. 

I would think at 84 they would be sure to check her heart and all. They would not do surgery if they did not think her chances were good to come through the surgery and remove the cancer. 

Talk to the surgeon.

Take them. 

Non Hodgkins Lymphoma T Cell

by marti152 - September 13, 2018

I am in search of any information on this diagnosis. Just wondering if anyone has been diagnosed with this.

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