Susan Cornett
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Posts posted by Susan Cornett
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You mentioned that your mom doesn't want anyone to go with her to the appointments. Does she take a notebook so that she can record what the doctors tell her? They throw so much information at the patients. I generally take my husband or mom and a notebook. With chemo brain in effect, I can't remember from one day to the next!
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Meloni,
You've certainly been busy but it sounds like you have a top-notch medical team. I especially love the part about relief for your migraines. I went through a period where I had them almost weekly and then they just stopped. I know the pain and am sure you will welcome the relief. That's the last thing you need with everything else going on.
All in all, your post sounds very positive and I like that your oncologist will be aggressive with the scans. I've been on the 90 day protocol since I was diagnosed last year.
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Julie,
You might also check out www.chemocare.com. It has information about side effects and mitigating those side effects based on the chemo drugs. I've had both of the drugs you'll have but in different combinations (cisplatin/pemetrexed and carboplatin/taxol). Good luck to you!
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Vicky,
Glad to hear you are progressing with your treatment. With cancer, I think the biggest issue we have is a loss of control. Our lives are dictated by scans and appointments and treatment, and recovering from it all. I'm a control freak and it drives me crazy! I have been able to let a lot go, and I'm making plans for trips and activities as if I didn't have that nasty cancer looming over my head. It will always be your first thought in the morning and your last thought at night, but don't let it consume your thoughts in between. Find something good in each day and enjoy each day.
I understand your concern for your husband with his additional roles, but your priority right now is you. You need to take care of yourself (eating, sleeping, resting, hydrating) in order to fight this. Do you have any others who might be able to help you and your husband? Family? Friends? I know it can be tough to lean on others and ask for help.
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Good morning, Fred. Sounds like you have an early diagnosis which is always a good thing. Because surgery isn't an option, I presume you've moved on to or will be moving on to chemo and/or radiation? How are you feeling? If you have questions, ask away. We've all been there!
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Just a post to vent......I'm mentally and physically exhausted. I have finally hit the wall with this round of treatment. I endured chemo (cisplatin/pemetrexed) last year, but that cycle was a little more forgiving; one long day every three weeks. This round, I've had daily radiation for almost 6 weeks and weekly chemo (carboplatin/taxol). The chemo side effects aren't as bad, but I guess the daily grind of radiation, with the weekly chemo, and the fatigue have finally knocked me down. I'm also starting to lose my hair and Super Doc told me I'll have two more rounds of chemo in June and those two treatments WILL take the rest of my hair. I thought I was mentally prepared to lose my hair, but I wasn't. It's starting slow but at some point, I'll take matters into my own hands and just shave my head. But then I remind myself that I told Super Doc I'll do whatever it takes to beat this, and losing hair is just a casualty of this war.
Thanks for letting me vent. Sometimes just putting it in writing helps me, especially because I know you've all endured this and so much more.
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What types of symptoms is your mom having? I had cisplatin/pemexetred last year, and my doc managed the nausea very well. There were days that I didn't want to eat, but I tried to always get something down. I finally bought some Boost and kept those for the days when I couldn't even look at any other food. I'm currently doing 6-8 rounds of carboplatin/taxol. The only issues I'm having right now are fatigue and my hair is starting to go. But my carbo/taxol is being given as a back-up to radiation so I'm likely not getting the same dose as your mom.
I'm a big fan of www.chemocare.com - lots of great information about treatments and managing side effects.
My first scan following last year's chemo was about 6 weeks after treatment, and then every 90 days thereafter. Your mom will probably be on a similar schedule. You will find that you'll both be anxious around scan time. If you have the opportunity, read Scanziety by Tom Galli. It's available as an e-book. Tom is a member on this forum and his book does a wonderful job explaining the highs and lows of this entire process.
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Add "Fight Song" to your playlist - it is good. I'm happy to see that you can find a silver lining everywhere. That's been my mindset - find something good about each day, even the icky parts like scans and chemo. I met a lady last year at an American Cancer Society function who told me "I have cancer, it DOES NOT have me." I think that is an awesome mantra for all of us.
Keep us posted on your progress!
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Jan,
I can't imagine how difficult it must be to be so far from her during this time. My grandmother had SCLC and didn't experience the agitation until the end when she had confirmed brain mets. With your mom, it could be any number of additional contributing factors, including the dehydration. Can you take her to a different hospital tomorrow when you arrive, or at least get another opinion?
Please keep us posted. Safe travels to you and your husband.
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Brenda,
Glad to see you have a plan in place and that your surgeon will be able to perform the less-invasive procedure. I think it's normal for the surgeons to biopsy lymph nodes; those little buggers like to spread cancer cells so I'll keep my fingers crossed that yours are clear.
As for feeling down, I get it. Once I had surgery scheduled and realized just how sick I really felt, I was just down. I didn't know I had cancer prior to surgery; in fact, a biopsy performed during a bronchoscopy indicated just the opposite. I think we just run on adrenaline for so long when this process starts that we do wear down once we can stop and catch our breath. There are so many moving parts to this with surgery and treatment and tests and scans. It can be overwhelming but don't let it get you down. You have an early stage diagnosis and that is a good thing.
Keep us posted.
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Lily Anne,
It is overwhelming to watch a loved one suffer from a terrible disease. I hope and pray that your dad's hospice provides him relief. Hospice services typically include counseling for other family members so that might be an option for you. Please come here any time to vent. We will listen.
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Hi, Brenda. I understand your anxiety. My grandmother had SCLC and had treatment for the entire 13 months she was ill. But, as Bridget mentioned, there have been amazing advances in both treatment and in management of side effects. I'm not saying it's all sunshine and flowers, but it's light years ahead of where we were just 5 years ago. There are so many long term survivors here. Wouldn't you love to be able to thumb your nose at cancer and say that you won? We're here for you. We've walked (or are walking) in your shoes.
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Julie,
First, what was the reasoning for denying the treatment? You and your physician have the right to appeal the decision. Your coverage should provide a process for both standard and expedited appeals. If you can, either post here or message me the name of your insurance company and (this is key) the number in the lower left corner of your policy or certificate. This is the form number and, once I have that, I can see the approved contract. Perhaps my 25+ years writing contracts in the health insurance industry may help someone.
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Hi, Sarah. Recurrences suck, but there's always a silver lining: you are ALIVE to even have a recurrence. You've beaten cancer twice so let's do it again. I'm fighting a recurrence in a lymph node that couldn't be removed because of its proximity to the aortic arch. Let us know how you're doing and, if you feel comfortable, share your plan of attack.
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Good morning, Julie. I had lung and thyroid cancer; thyroid cancer was found when doc was looking for lung mets. Because there had been no spread of the thyroid cancer, I had a thyroidectomy and that was the extent of my treatment. I wish you the best.
- Mally, Tom Galli and Julie in SoCal
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I think we can all agree that chemo stinks. I had four rounds of cisplatin/pemexetred last year and I'm 3 weeks into 6 weeks of carboplatin/taxol for a recurrence. Last year, my girlfriends and I decided to have themes for chemo. One session was 80s and the last session was Mardi Gras. We had beads and boas for everyone. We're doing the same thing again this year. We had spring fling, beach fun, and today's pajama party. For some reason, my husband wants no part of the costume concept!
I'm sharing this in the hopes that it will inspire you to find a way to get through chemo with a smile. If we don't laugh, we cry.
- Mally, Julie in SoCal, Tom Galli and 4 others
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Mom just diagnosed
in GENERAL
Posted
We went through something similar when my grandmother was diagnosed with lung cancer. My mom eventually wore her down and went with her to all of her appointments and scans. Your mom may be embarrassed (but she needn't be) but she may also be overwhelmed with all of the new information, terms, appointments that are coming her way. It's a lot to take. We're here for you and her. Let us know how we can help.