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drerni

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    Calgary
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    CAN
  1. Earlier today, my mom passed away after a 10 month battle with lung cancer. She put up a extraordinary fight all the way until the very final moment. She was a loving, gentle and devoted person deeply dedicated to her family and I am incredibly proud and happy to have had her in my life for as long as I did. I already miss her more then words can describe. ------ Rest of this post is a warning for SCLC caregivers ------ Dad and I were with my mom the entire time and spend the last 26 hours with her at the hospital. That last stretch was incredibly hard. Although I've read about the dying process, most of it was like sailing a boat in pitch black night towards a 10,000 waterfall. We had no idea what was coming next and when. Talk to your doctor and nurses and find out as much as you can as it will give you at least an idea of what may come next, closer to the end. Something we certainly weren't prepared for was the onset of confusion. Apparently, many lung cancers will affect the electrolytes in the blood. As the calcium levels rise - they create confusion, restlessness and tiredness all at the same time. Make sure to read up on it if you start noticing any of those symptoms. I wish we did. To say I'm heartbroken would be a gross understatement. My mom and I have been through war, refugee camps and four countries before coming to Canada with next to nothing. Her path was never easy, but she always gave us her full love and devotion. Tonight, heaven has a new angel and I hope I'll do her proud until we meet again.
  2. Hi everyone, I thought I'd reach out and hopefully someone may have a suggestion. You can read all about the background of my mom's condition here: viewtopic.php?f=7&t=45615 The doctors have since stopped all chemo treatments and we're now pretty much on our own. However, she has been coughing a fair amount - getting into these "cough attacks" about once every hour or two. This happens at night as well, making it really difficult for her to get any rest. Is there anything you would suggest to help with that?? We tried a few different cough suppressants, with little luck.
  3. June 4, 2012 Since switching to Topotecan, my mom has only been able to receive 2 chemo treatments. Her blood count has been too low every time to keep things on schedule. Things are not looking good. She gets out of breath and tired by the time she walks to the bathroom and she can't stand long periods of time. It feels like we're out of options. I know we all have to go someday, but this is incredibly hard.
  4. April 30, 2012 Mom has been on Vincistine + Adiamycin + Citoxan for three rounds and last week they did another CT scan. The cancer has started spreading towards her shoulder and they are now going to start Topotecan next week on a three weeks on / one week off schedule. She seems in good spirits still and believes this will help. We just got the news today, so still in shock and processing everything we've been told. Not sure what else to do. - e.
  5. When we first heard about mom's cancer, we (my sister and I) went into a research frenzy and came across a number of articles, posts and so forth - all claiming they had a viable alternative or supplement to cancer treatment. One of these recently resurfaced - DCA - You can read the article here: http://www.emphasisworld.com/0-2011/clm ... 06/d11.php The doctor is in Alberta - but they're currently not conducting trials, so I'm almost considering finding a supplier on my own. I came across this website: http://puredca.com My question is - have you heard about or have been treated by DCA and if so would you have an experience to share? - E.
  6. Hi Petunia, We've been battling SCLC since September of last year. You can find the thread I started farther down the list of topics. My mom stopped responding to the first line of chemo and they started her on a second line which, so far, seems to be keeping things in check. She gets tired easily and has had to receive blood a few times. She's taking Avemar and Shark liver oil in conjunction with the chemo. She is also cold a lot, and I have a feeling that's due to the lack of red and white blood cells (which are killed off by the chemo) - but we try and keep her warm and resting as much as possible. She moves around for 15 - 20 minutes at a time, which is really hard to witness because she used to go for 4 hour walks before her diagnosis not that long ago. Keep your and her spirits up and focus on today as much as possible. It's been 6 months since my mom's diagnosis and one thing I've learned is that you really have to focus on each day. If she's feeling a bit better and you two can converse and have a good talk... it's a good day We've had much, much more good days then bad and that really helps put things into perspective. My heart goes out to you and others who are on this journey and I really hope you get to spend many more years together. - Ernest.
  7. Thanks for the link. The Canadian Cancer Society personi talked to yesterday sent me there as well. Found a few potential trials, so now we'll see what happens. I find that while our doctors are helping us, it just doesn't seem like enough. I emailed a couple of contacts I found on the trials site directly as well. It seems like the only person really pushing for you.. Is you.
  8. drerni

    Still Clear!

    Thanks for sharing these great news! It's such a hard battle to fight and these kind of updates give hope to so many.
  9. I'm sure you've heard about it by now, (in case you haven't: LINK). Has anyone tries going this route? With our recent news, I'm looking into the possibility of flying with my mom to Cuba to get the vaccine, depending on what the doctors come back with next week. UPDATE: After looking at more of the research documents, it turns out it's for late-stage NSCLC patients. I'll try to get a hold of someone at the Canadian clinics who are trialing this or similar treatments this week.
  10. Just came back from the doctor's right now, with not good news. We had a CT scan on 22nd of December and 4th round of chemo on 28th of Dec. At the last scan on November 2, 2011, the main cancer was shrinking was was scanned at 3.3cm. With today's results, the cancer is at 3.5cm, and there's been no change in the stomach nodes. Doctor said there's no chance of putting the cancer in remission anymore and they're considering switching to one of the following treatments: - Vincistine + Adiamycin + Citoxan - Topotecan - Clinical Trials - We'll find out what's available early next week. As it sits right now, she'll get another blood test and a MUGA test next week... which means by the end of next week we'll hopefully figure out what to do next. I'm really disappointed with the news, but still holding onto a glimmer of hope we'll have another year or so together. If she chooses to not take chemo anymore, it sounds like it would be about 3 to 4 months of life. With the chemo's, it sounds like about an extension of 6 months to a year. If you have any advice / suggestions / experiences... I'd really appreciate them. Thank you, - e.
  11. Thought I'd share some updates with everyone, since I found this forum immensely helpful and encouraging. Last week, my mom completed her fourth round of chemo and she is going for a full body CT scan tomorrow. We're hoping for the best Here's a brief history of what happened so far: Aug 29, 2011 - Dx Came in for a persistent cough and pain in the chest. Doctor recommended tylenol a few times already, and finally relented to send her for an X-Ray. Aug 31, 2011 - CT scan Found lump near the bronchi on the left lung and some other suspicious spots. Sep 2, 2011 Confirmation there is cancer on the lungs - found collapsed upper left lobe and diminished lung capacity. Sep 15, 2011 - Biopsy / Bronchoscopy Procedure in the morning. Was pretty hard on her. They also found her oxygen levels were too low, so she received 3L dosage of oxygen on a bottle / oxygen concentrator which was installed at the house later that day. Sep 20, 2011 - Met the Doctor Met Dr. Foley. Explained this was a Small Cell Lung Cancer and the usual about mortality rates and that we have up to a year of life left. Sep 27, 2011 - First round of chemo etoposide // vepesid vp-16 cisplatin // platinol - aq dexamethasone // decadron ondansetron // zofran This was followed up by two days of oral chemo (8 pills) & dexamethasone. Went pretty well. She didn't really feel any effects until three weeks later. Hair started falling out around that time, so she decided to shave it all off. Overall, feeling pretty good and solid. Oct 14, 2011 - Bloodwork Found out that blood count was too low to receive another Chemo, so it was delayed by a week. Oct 25, 2011 - Second round of Chemo Same cocktail. Started feeling some of the side effects finally. She was more tired this time around but still remained active with occasional walks. Experienced a little bit of weight loss. No vomiting, but she did experience some stomach pains. IV was followed up by two days of oral chemo (7 pills) Nov 8, 2011 - CT scan Tumor seems to be responding really well and has already shrunk from 5cm to 3cm and lung capacity was restored. She came off oxygen which was a small win. However, we found that two lymph nodes around the stomach area were enlarged. Nov 15, 2011 - Bloodwork Found that blood count was too low, so we had to delay treatment by another week. Nov 23, 2011 - Third round of Chemo The doctor increased etoposide, but lowered the overall dosage. This one hit the hardest. Mom ended up passing out about 5 days past chemo and broke her hand while falling. She is now in a cast. Felt very tired and beat up. The effects this time lasted a lot longer. Strong stomach pains. Dec 14, 2011 - Transfusion Bloodwork found that her blood counts were too low to receive chemo and were not recovering as quickly as needed. She received 2 units of blood. 2 days later she started feeling a bit better. Dec 22, 2011 - Fourth round of Chemo Nurse explained that this dosage is about 25% less then the first round. They also rearranged the post-chemo pills to taper off on the dexo and ease her into the tiredness. We're now 5 days after this treatment and she's just now starting to feel the tiredness come on. I bought a few supplements including B6/B12/Folic Acid; Zinc; Calcium & Magnesium; Astralagus which we'll start today. Idea is to help with the bone repair and boost the blood count. In order to increase energy, we'll try some Korean (red) Ginseng, Ginko Biloba and some Siberian Ginseng. ---- She has another CT planned for tomorrow (December 28, 2011), so I'll report back when we get the results. The next doctor's appointment is January 10, 2012 when they'll let us know how many more treatments she has left and what's next for us. The cancer seems to be responding really well to chemo and chances are they'll do radiation to the chest and maybe the brain (as a preventative measure) in the new year. I'd love to hear from any of you with experience and hope to share more good news with you on this journey. Happy New Year! Ernest.
  12. Hi Sarah, We are going through a similar experience with my mom... she goes in for chemo tomorrow and will supplement with some avemar and maitake extract. I wish you and your family the very best of luck from the bottom of my heart, and please keep us updated.
  13. Thank you so very much for the info and replies. She starts chemo tomorrow and these are the drugs they'll be using: etoposide // vepesid vp-16 cisplatin // platinol - aq dexamethasone // decadron ondansetron // zofran After doing more research, she's decided to start with Avemar (which I ordered today from the US) and a Maitake Fraction D Extract (also ordered from another online retailer)... And after chemo, she'll take some BroccoGen to help clear out her system. We're hoping for the best and I really appreciate the chance to connect with you here. Cheers, Ernest.
  14. Hi Everyone, My mom was just diagnosed with Small Cell cancer in her left lung. After speaking with the oncologist, he thinks it may be extensive. The tumor is about 5.6cm in diameter. I have a photo of the CT scan results, if anyone cares to help interpret them further. She should have her first appointment at the local cancer clinic by the end of next week to determine treatment. Everything I hoped it wasn't... was. I've read this board a few times looking for glimmers of hope and it's certainly been helpful. I just wish there was something I could do. Are there any SCLC survivors still around who could offer a word of hope or just share their experience so far? Warm regards, e.
  15. Hi Sarah, Terribly sorry you found this out and I truly wish you and your mom the very best of luck. Keep us updated.
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