sunnyside
-
Posts
30 -
Joined
-
Last visited
Content Type
Downloads
Store
Profiles
Forums
Gallery
Blogs
Events
Posts posted by sunnyside
-
-
Thank you all for the support. I really don't have enough pain to complain about - small doses of Ibuprofen take care of it. The problem with the hip is that it's in the pelvic part of the joint and threatening a pathologic fracture that would confine me to a wheelchair - which I'm not ready for! Radiation probably will not be an option because it wouldn't be expected to restore the structural integrity of the bone but that's what I'm going to see the orthopedic oncologist about.
-
I had a scan last Tuesday after my second cycle of Cisplatin/Taxotere. My oncologist wanted to wait until after at least the 3rd cycle but I felt so awful on that stuff that I told him I wouldn't do more than 2 without some evidence that it was working. The scan showed that it has not been working with progression of all bony lesions and the right adrenal lesion. I went to Dana-Farber to be evaluated for eligibility for a clinical trial on Thursday and, while they will test the tissue obtained at a second biopsy in late March for the genetic mutations that they have drugs on trial for, they are much more concerned about the metastasis in my left hip. It has grown since my scan in March and there is concern about structural stability of the hip.
So I am on a treatment hiatus (thank goodness!) and will see an orthopedic oncologist at Yale on Friday so we can decide what to do about the hip. I may actually require hip replacement but Dana-Farber thinks my cancer is slow-growing enough to warrant going ahead with that surgery and that sounds like good news to me.
-
My insurance company wouldn't approve Avastin so my oncologist decided to mix it up a little and go with Cisplatin/Taxotere, which I got on Friday. I got Aloxi in the IV and have been taking Emend so minimal nausea. My hip is more painful today but otherwise I'm feeling better than I expected. I plan to head up to Dana-Farber as soon as possible to make plans for a clinical trial at whatever point the Cisplatin/Taxotere doesn't work or stops working. I'm going to need another tissue biopsy because the study will depend on molecular markers and there's no more tissue from my original biopsy. I have a very accessable lesion in my pelvis, so I'll try to get rolling on that, too, before I might have to have the hip irradiated.
So my overall plan is Cisplatin/Taxotere as my last shot at traditional chemotherapy. One clinical trial when and if that fails. Then best supportive care. My next scan (after two cycles of the C/T) will be the day before tax day.
I read of Carole Hammett's passing and, while it saddens me to lose her voice, I celebrate her ability to thoroughly enjoy her life to the end and plan to keep my focus, as she did, on quality of life.
Thank you all for your thoughts, prayers and support.
-
I know I'm not as active here as many, but I wanted to update those of you who know my story. A scan yesterday documented progression on Alimta, my third line treatment. I knew what the scan would show because I developed left hip pain over the weekend. My lung primary is stable but I have multiple new nodules in both lower lobes, my main liver lesion is larger and there are many smaller lesions scattered throughout the liver, my right adrenal lesion is larger, my thoracic spine lesions are stable but there is a new one at T12, there are new lesions in the L1 and L4 vertebral bodies and new lesions in the pelvis (accounting for the left hip pain). So I had a partial response and then stable disease on Carbo/Taxol/Avastin and then progression and bad side effects on both Tarceva and Alimta. My oncologist is planning to go back to the Carbo/Taxol/Avastin starting Friday as long as the orthopedic surgeon says we don't have to do anything right this minute about the left hip metastasis.
It's so odd. I feel fine. This thing is growing and spreading and will undoubtedly beat me sometime in the foreseeable future, but I would never know it without the scans. Bleargh.
-
Ned,
I elected not to automatically do Neulasta after my first Alimta on 12/29/08 and my absolute neutrophil count a week later was 900 so I capitulated and got the Neulasta with the second one. I would certainly give it a shot without. I've unfortunately had GERD and mild nausea and dysgeusia (bad taste in mouth) with the Alimta. I hope it's not a problem for you and you get to keep your recently recovered happy GI tract. I also just got over what appears to have been a respiratory virus that kept me in bed with temps over 102 for six days straight. First time in this whole process I've actually felt sick!
Anyway, good luck to both of us with the Alimta.
-
Yeah, I had eight cycles. Fell out two weeks after 1st cycle to the point that I had it shaved. Stayed thin enough that I occasionally shaved through treatment. Started seriously growing back about two months after I finished (last cycle 8/12/08). I just had my first trim last week!
-
Tova,
I've gained about 15 pounds since I was diagnosed in March. A lot of mine has been like Judy said, eating to keep nausea at bay. It is also very difficult for me - most of my clothes don't fit and I feel like anyone with incurable lung cancer and no room in the budget shouldn't be going out and buying new clothes. I also tell myself that it's stupid to worry about it - if the cancer were winning I'd be losing weight so I try to remember that those pounds mean I'm still keeping the cancer in check. The other thing you might try is talking to your mom's doctor about an alternative to Prozac. Prozac is every non psych doctor's knee jerk choice for depression, but there are some out there that have less effect on appetite. One I like is Wellbutrin. Just a thought but anything to help her stay in the saddle and fighting.
-
Tova,
That cocktail was my first line treatment from 3/08 - 8/08. I don't know of anyone who doesn't lose their hair with the Taxol. It happens really quickly right about 2 weeks after the first treatment. I didn't bother with wigs (I got two but didn't use them). I mostly just went bald - sometimes wore scarves. The Taxol also cause muscle and bone aches for me from day 3-6 after chemo. It resulted in ~40% reduction in all visible tumors for me.
Good luck to your mom and have a great visit to Jamaica later this year.
-
Hi, Nurit. I was diagnosed the same time as your mom. I had 8 cycles of Carbo/Taxol/Avastin with about a 40% response then progressed on Alimta, had radiation therapy for painful lesions in my spine and had my first Alimta last Monday. Had to have Neupogen today for a low absolute neutrophil count but I'm still at work, still helping the kids with their homework and didn't feel nearly as awful during the days after the Alimta as I did after Carbo/Taxol/Avastin. I hope your mother tolerates it as well.
-
Sandra,
I haven't been on this board for very long and I don't post too much, but I have very special feelings for you because we seem to be in pretty much the same place with our cancer and treatment. Many positive thoughts are coming your way from me.
-
Hi, Jenn,
I'm so sorry that you and your family are having to deal with this. I, too, was diagnosed with stage IV NSCLC as a result of back pain. I have lesions in my thoracic and cervical spines. I have not had the severe pain your stepfather is having and I am very sorry that he is having such a tough time with that. I second Ned's recommendation that you check out cancergrace.org, but everything you have described sounds appropriate to me. What's called febrile neutropenia (fever when the chemotherapy has knocked out the white blood cells that fight bacterial infections) is the biggest risk of chemotherapy and they may give your stepfather some white blood cell boosters (Neulasta or Neupogen) after his next chemotherapy treatments.
Sandra is right, surviving treatments is sometimes the biggest challenge of this whole deal. After radiation no one is going to want to think about surgery for quite a while because of the poor healing. Radiation is a great treatment for pain related to spinal lesions and I would expect him to get pain relief as the tumor responds to the radiation but there is also the inflammation that comes in response to the radiation injury so sometimes there's a wait involved.
Good thoughts to all of you as you walk this road.
-
Sandra,
I think you're rash sounds a lot like mine. The scalp was the worst, for me. There were two nights when it took me 3+ hours to go to sleep and I had to keep moving an ice pack around on my head. I skipped one day (day 23) and started back on a lower dose (100 mg/d on day 24). My rash was already starting to calm down by then (I started Minocycline on day 20) and I dropped the dose because of diarrhea and nausea. If you're not on one of the tetracycline class (tetracycline, doxycycline, minocycline) drugs that would be the thing to do - it started helping within a day or two for me. I went off it for while after dropping the dose but the rash started to flare so I'm back on the Minocycline.
Targeted therapy my a#@.
-
Previously 6 feet, now 5' 11 1/2".
-
I was on 150 mg for 3 weeks and dropped to 100 mg because of uncontrollable diarrhea, nausea and fatigue. I feel great on 100 mg. I had started Minocycline for the rash and that dried it up a lot. I stopped that when I dropped the dose of Tarceva but restarted it 2 days ago because the rash started to blossom again.
-
Your prayers and positive thoughts for the reversal of my hair loss, relief of my pain, and successful tarceva treatments, as always are appreciated.
Sandra,
I love that you are very specific about what you would like us to focus on. I have just started doing this, as well, and my friends and family very much appreciate. You definitely have my very positive thoughts.
I started Tarceva last Thursday. I already have rash, which is good, and it's not so bad that I feel any more like a freak than I did with the hair loss, also good. I don't feel so great today for other reasons, but I certainly don't feel as ill as I did during days 3-6 after each chemo cycle. I wish the same for you.
-
Mary,
Cat is exactly right. I had linear reduction in tumor size documented by scans after cycles 3, 4 (CT angio done for shortness of breath) and 6. Three different oncologists all agreed that it made sense to continue as I was tolerating the chemo very well. Scan after 8th cycle shows stable disease so we're done with Carbo and Taxol. Everyone felt pretty confident that we should start Tarceva right away - the only question was whether or not to continue Avastin. My oncologist decided that he would like to have it available to use with third line treatment if and when that becomes necessary so we stopped it.
-
Thanks for the heads up, Ned. The heartburn I got with Carbo/Taxol/Avastin was really awful. I'll be on the lookout as I start Tarceva.
Wendy, I am very much hoping to have as much luck with Tarceva as you have had.
-
My scan after the 8th round of Carbo/Taxol/Avastin showed stable disease compared to the scan after the 6th round. I took last week off from cancer and went on a cruise to Alaska with my husband, which was wonderful. My last chemo was four weeks ago yesterday and it's amazing to me the difference in how I feel with just a week off. Energy level is great, voice is back to normal, no heartburn, etc. Met with the oncologist yesterday and we are moving to Tarceva as second line single agent therapy - first dose will be tomorrow.
Wish me luck!
-
Has your onc checked your platelets after the Gemzar? Low platelets could surely cause the nosebleeds and can be one of the side effects of Gemzar.
-
Did the nosebleeds just start recently? I have had a constant runny nose, sore throat, sinus congestion and occasional bloody noses but constant bloody discharge from my nose since I started Carbo/Taxol/Avastin in March. I know the Taxol causes a mucositis (inflammation of the mucous membranes like Patti said) and many other chemo agents do as well.
-
Coming up on six months! Wow, I didn't think I'd be able to say that. I think I'm about to switch from Carbo/Taxol/Avastin to Tarceva. Waiting for final word from oncologist.
-
My shoulder pain is worse than anything the cancer has thrown at me. Mine is AC joint arthritis and it has been injected 3 times - each time helps for a while so I'm going for #4 Thursday. I had ad MRI of my shoulder on top of a plain x-ray to verify that there were no mets in the area, because radiation would be the treatment for that.
Causes of shoulder pain related cancer would be bone mets, pancoast tumor and disease around the left diaphragm, which refers to the left shoulder. That can either be pleural disease or abdominal cavity disease.
I hope someone pays attention to your dad and gets his pain figured out.
-
There is a ridiculously long back story, but I am actually scheduled to be on the Rachael Ray Show (the ABC daily talk show) on September 5. The story involves my lung cancer in that Racheal and a designer she works with sometimes decided to make a wedding dress for a girl because I had planned to and then couldn't when I was diagnosed.
They didn't really plan to coordinate with the Stand Up To Cancer thing but it's nice that it worked out that way.
-
LC type: Stage IV NSCLC (poorly differentiated adenocarcinoma) with mets to spine and liver
Treatment: Carbo/Taxol/Avastin - about to do 8 cycle, no serious side effects, continued shrinkage of measurable tumor in liver, great energy, still working
Living in the USA.
It's been a long while
in MEMBER UPDATES
Posted
I know I haven't been around either seeking or giving support, but you all had been so very helpful to me early on with this disease that I wanted to update where things stand with me.
Basically, I have had slow progression of disease with growth of all known lesions and new ones developing regularly since I finished my first line chemotherapy (Carbo/Taxol/Avastin) in August '08. Since then I have been on Tarceva, Alimta, Cisplatin/Taxotere, Navelbine and now Gemzar since August 18. I continue to work but have not been seeing patients since the first of August after I had to go on long-acting pain meds for the progressive bone mets. I am short of breath with minimal exertion and have developed a small pleural effusion on the right side (side of my primary). My liver function tests are elevated and the large lesion in my liver has many new friends. Once the liver function tests reach about 5 times normal they'll have to stop the Gemzar. I still get Zometa and will continue that until I opt for no treatment, no more work and enroll in Hospice.
I still enjoy interacting with people at work and my family. I'm still sewing and even planning a trip to New Mexico late next month to see my siblings, mother and #2 daughter for a few days around my brother's birthday.
I realize that I'm in the middle of that transition from living with this cancer to dying of this cancer, but right now my quality of life is good (still eating, sleeping and laughing) and symptoms are manageable.
Lisa