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| Post Date | Body | Has new content | Topic | Forum | Name |
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Welcome to the new GRACE site! Here we hope to provide a place for our community members that go beyond lung cancer. Our amazing faculty is building and we would like to share their knowledge with others, to provide a place for those dealing with other types of cancers. Share our forum with others, and please consider this a safe place to discuss and ask questions about living with cancer. |
Please feel free to start a thread! | Blood Cancer Member Updates | dbrock | ||
GRACE would like to start conversations about other types of Cancers! We are hopeful to begin providing the same great information for Head and Neck Cancers. Feel free to reach out through these forums. We are happy you are here. |
Please Feel Free to Start a Thread! | General Head/Neck Cancer | dbrock | ||
If you struggling with depression or going thru a tuff time in your life maybe trying to seek spiritual help would help you like it helped me , sometimes I feel hopeless and with no purpose of life in times like those I just remember there some one i can count on and seek for the way of life and happiness. Everyone is important in this life even you , God loves us all and we have a IMPORTANT part to play. I'm asking you to give him a try and give it a try let him come into your life. Give him all your problems and watch him give you all the answers and solutions for you. I promise it won't disappoint you |
If you need motivation - 1294781 | Full Archive | fastlife10 | ||
I first joined GRACE back in 2008 when my wife was diagnosed with lung cancer. I had been scouring the internet looking for authoritative information which could help us understand the disease and our treatment options. I was amazed at the wealth of quality information on the site, which I hadn't found anywhere else. GRACE became our most trusted asset throughout her cancer battle. Although GRACE charges no user fees to access all of its valuable content and access to the forums, we do rely on contributions from our members to cover our operating costs. In addition, we're working on a major upgrade to the site, which will introduce exciting new features to make the GRACE experience more user-friendly and helpful, as well as more community-oriented. Please consider a donation in whatever amount you can. You can do so by clicking this link. And keep up-to-date on the latest GRACE developments by subscribing to our free e-newsletter. Thank you for using GRACE, and for supporting Dr. West's vision of providing quality cancer information to people all over the world. JimC |
Help us make a better GRACE! - 1294180 | Full Archive | JimC | ||
Hello, I also have always had pain in my middle and ring finger on and off (right arm) with and without the Honer's syndrome symptoms showing. Recently the pain in my finger has gone to my radius/ulnar part of the arm and then I felt it in my scapula w/ slight neck. It's not unbearable pain but it's painful and uncomfortable and I don't always stay in pain. I also experienced arm muscle spasms today. I searched up these pains with horner's syndrome and saw Pancoast syndrome. I don't have any family or friends that smoke so I don't know why I would have lunch cancer but I never found the smoke of cigarettes to smell bad when I did pass by someone smoking and didn't try keeping that smoke-air from entering my lungs. I doubt that little of smoke would cause cancer though. Is there anything that could be causing the pain in my arm and scapula besides Pancoast and should I get this checked out? Right now I can't afford all these medical tests and I don't have insurance either so Im reluctant in having tests unless I know my life is at risk. Thank you |
Horner's Syndrome and Pancoast Syndrome - 1294175 | Full Archive | noa119 | ||
March 26, 2018 at 10:40 pm #1294138 bfarz March 27, 2018 at 6:25 am #1294140 Although a 1 mm change in a 3 mm nodule appears to be significant in terms of percentage increase, a change of 1 mm in any size nodule is not a clear indication of growth. Many factors related not to growth but to the scanning process can make an unchanged nodule appear to be a millimeter larger, such as the way the images “cut”, the use of a different CT machine and slight changes in the angle of the images. Most oncologists would not consider this clear evidence of progression and it would not impact their management of the cancer. You didn’t state your current scan interval, but unless it’s quite long (a year or more), then your doctor will probably not see a need to shorten the interval. But that’s a matter of personal preference that varies from one oncologist to another, and given the stable results from the latest scan, there isn’t a strictly defined standard interval. JimC |
1 mm progression on Tagrisso | General NSCLC | Anonymous (not verified) | ||
March 26, 2018 at 8:36 pm #1294136 onthemark On a different forum it is often stated that these lesions rarely grow large, but I thought it was the case that they can grow large but are not called AIS when they grow to larger than 3 cm so it is only a question of definition rather than related to the natural life history of these lesions. Can a sub-centimeter ground glass lesion that is stable for over a year grow large or does it usually stay small? This topic was modified 3 days, 11 hours ago by onthemark. Such lesions rarely grow large, and the longer you follow a small ground glass lesion without growth or with only very slight growth, the less likely that it will ever grow significantly. You may find the comments by Dr. West and Dr. Pennell in this discussion informative. Despite the age of the discussion, the principles remain the same. JimC Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19 March 27, 2018 at 7:53 am #1294142 onthemark Thanks for your reply and for linking the thread. I read through it and I see how it discusses growth rates and has a lot of information about observing their growth and the importance of not over treating indolent lesions, but I don’t see any discussion of a maximum size or a limit on how big these lesions get if you wait long enough. If the volume doubling time were long, let’s say 2 years, then the linear size grows by the cube root of 2 = 1.26 in 2 years. In 10 years, the linear size grows by (1.26)^5 = 3.18 So even a sub cm lesion would become huge if you waited long enough, unless there is some absolute limit on the growth of these lesions. Of course this is also assuming the growth was uniformly exponential rather than episodic and that there was no intervention and also that the lesion didn’t undergo a transformation to an invasive cancer with a higher growth rate. I’m 54 and have been previously operated (left upper lingula preserving lobectomy) and had chemo for lung cancer. My life expectancy without lung cancer is sufficiently long that slow growth lesions might impact my health. My next scan is in July and then it will have been 2.5 years since the original detection of these lesions with my pre-op ct. Up to now they haven’t grown but it will have been a year since my last scan. I don’t think any one likes the idea that there is a cancer growing in them even if it is slow for lung cancer. It would be comforting to think there’s an absolute limit on their size. March 27, 2018 at 10:53 am #1294145 If these nodules were never biopsied and haven’t changed in over 2 years then it’s probably not cancer. I hope it’s not. All best, March 28, 2018 at 1:49 pm #1294153 onthemark I’ve apparently had these 2 ggo’s since the very first scan, prior to surgery, but they were first mentioned in the radiology reports as “subtle” ggo’s after I finished adjuvant chemotherapy. That was a big surprise to me at the time. I was having three month scans for awhile and the lesions were reported as stable. In my most recent scan there was no reference at all to the ggo’s and I told my oncologists that i was unhappy about getting all that radiation (these were not low dose CT’s) and getting shoddy reports. I asked to have a new report but that didn’t go anywhere. After that I decided to wait a year+ till my next scan, more out of frustration than anything. Unfortunately in Canada we can’t decided which hospital we go to, or who reads our scans, or who our specialists doctors are. That’s one of the downsides of socialized medicine. The upside is not having to deal with insurance companies. Anyway the ggo lesions in my right lung were noted as stable from Nov 2015 to Feb 2017, while the last scan I had 3 months later didn’t mention them at all. My next scan is early July 2018. I realize I’ve had it a lot easier than many other people with lung cancer. My impression is that the vast majority of persistent ggo’s over 5 mm are thought to be either pre-cancerous or outright cancer, but I don’t have any knowledge of data to back that up. I am hoping to have the very slow growing kind. |
Adenocarcinoma in Situ or Ground Glass Opacity Nodules | General NSCLC | Anonymous (not verified) | ||
December 17, 2017 at 3:25 pm #1293645 jkkwok1 December 17, 2017 at 5:34 pm #1293646 Welcome to GRACE. I’m sorry to hear that so far you’ve only seen 7% shrinkage, and I hope that you do continue to get further reductions in the size of your nodules. The full effect of radiation treatments can take quite a while to become fully evident, so there is that possibility. Since crizotinib has been suggested as the next treatment if there is disease progression, I assume that your cancer cells have been tested for certain genetic abnormalities, which has revealed an ALK rearrangement. Crizotinib is specifically designed to target cancer cells bearing the ALK rearrangement, and such targeted therapies can be extremely effective. Although that means that NED (no evidence of disease) is still a possible outcome, you should be aware that many patients manage to keep their cancer stable for long periods of time before switching to another therapy. In the case of ALK inhibitors such as crizotinib, there are next-generation inhibitors that can be effective should crizotinib cease working. In addition, there are other standard chemotherapy options, plus immunotherapies to which you might turn. Finally, the pace of research and introduction of new treatments is moving faster than ever, so by the time you might need a new treatment, there may be something new available. Good luck with your follow-up scans, which I hope will show continued shrinkage or stable disease. JimC Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19 March 21, 2018 at 1:26 pm #1294122 jkkwok1 Extract result of my CT scan in October 2017 as below I just saw my Dr. yesterday. He told me that he could not see tumor in my lung. The 3 lymph nodes involved: two look normal and the other is shrinking. He is still waiting for the official report. March 22, 2018 at 6:20 am #1294124 Although it’s great to hear that the previous evidence of cancer appears to have diminished, I’m sorry that this latest finding of an enlarged lymph node has caused such concern for you. In the context of an existing lung cancer diagnosis, this finding does raise the suspicion that the cancer has spread to this lymph node, but such nodes can become enlarged for a variety of reasons not related to cancer. Your doctor may want to biopsy the node to check for cancer cells, order blood work to look for an infection or may suggest a period of watchful waiting to see if the node returns to normal over time. From this lymph node alone, you’re not likely to notice any new symptoms, and at this point there’s no way to know whether your cancer has progressed. Even if it has, there are a number of possible treatments, some of which may significantly prolong your life. If your oncologist feels that this is the only active area of cancer, he or she may even recommend radiation. I hope that your next meeting with your doctor is productive and helps ease your concerns. JimC March 23, 2018 at 7:34 pm #1294131 jkkwok1 Thanks for your reply. My Oncology gave me two options: 1) to biopsy 2) to have another CT scan after two months. My new right supraclavicular lymph node, measuring 1.4 cm x 1.2 cm. may be too small to biopsy. 2) Besides this issue, the report also shows “Continued surveillance of the enlarged right subcarinal node is required as it does appear slightly larger today.” This subcarinal node is new to me. I am worried. I don’t know what will happen after 2 months. May be my disease is more progressed. March 23, 2018 at 10:28 pm #1294132 jkkwok1 Please interpret the following impression from the CT scan report: Impression: Does it mean the right supraclavicular lymph node is likely to have cancer? Thanks. March 24, 2018 at 10:14 am #1294134 With regard to the first of your two new posts, when there is the possibility of new growth or a newly enlarged node, but not clear progression, the options suggested by your doctor are common. You can have a biopsy which, as is the case with any invasive procedure (even one which may be minimally invasive), carries some risks of complications and may not provide a definitive answer. Or you can watch the suspicious areas over a relatively short interval to see if there is further growth. Although many patients worry about the risk involved in watchful waiting, in a situation in which the growth so far has not been rapid that risk is relatively minor, and if progression becomes clear it will be treatable. Either option is appropriate. Unfortunately we can’t tell you which option you should choose, and the recommendation of your oncologist would be much better informed and of greater value to you. In the context of an existing cancer diagnosis, any new growth or node enlargement is suspicious for cancer, which is why the radiologist described the new node as likely corresponding to the clinical findings (of cancer). On the other hand, it is only an assumption, as cancer patients develop infections just as anyone else does, and those infections can cause enlargement of a node. In the case of an infection, the node shrinks as the infection resolves, so continued enlargement or further growth can be a sign that it represents cancer. That’s why it can be good to wait a bit to see what happens with the node. JimC |
only 7% shrinkage after chemo and radiation | General NSCLC | JimC | ||
March 17, 2018 at 8:12 am #1294101 masalovai There are very limited publications related to effectiveness of standard chemo on bone metastasis. I’ve found that targeted drugs such Erlotinib and gifatinib are very effective in treating bone metastasis. I am afraid of bone mets progression and would like to find out if I can have any treatment for bone mets in parallel with my chemo treatment. Can I probably add gefitinib to my triplet….. ?? I’ve found one paper discussing this combo. They observed some improvement , but only 6 people were involved in the trial. Thank you Irina March 17, 2018 at 8:17 am #1294102 masalovai I would greatly appreciate if someone could send me more information on this subject . https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5511889/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4599040/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4998527/ Thank you March 17, 2018 at 8:51 am #1294104 Standard chemotherapy tends to be as effective as any systemic therapy in treating bone metastases, as such therapies treat cancer wherever it is found in the body, with the possible exception of the brain due to the blood brain barrier, where response may be lessened. Adding an EGFR inhibitor would only be considered if your cancer has been found to have an activating EGFR mutation, but even in that situation most oncologists do not feel that there is enough evidence to justify adding an EGFR inhibitor to the chemotherapy regimen. One reason for this is that sequential use therapeutic agents tends to be preferred, allowing a patient to get the maximum benefit from each agent, rather than “using up” several at once. Treatment of bone metastases may include the use of radiation in order to palliate symptoms such as pain, as well as to prevent fractures. You may want to discuss this option with your oncologist. The papers you cite show interesting results, but as you indicate the small populations make it difficult to draw any firm conclusions from the data, and larger, randomized trials would be necessary before such approaches gain clinical acceptance. The evidence is especially weak in the case study of an herbal regimen in one patient, as quite unusual results can occur when looking at just a single patient. JimC Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19 March 17, 2018 at 9:58 am #1294107 masalovai How the combo of chemo therapy is chosen taking in account presence of bone mets? Probably one chemo agent is working better in this specific case than other one…….? Or probably additional drug could be added to the chemo treatment to help with healing of bone metastasis…? Can you recommend any publications discussing treatment of bone mets , but not management of pain or bone destruction associated with them. March 18, 2018 at 10:49 am #1294113 It doesn’t matter if the lung cancer metastasized to bone or organ if the systemic treatment works it works where ever it is except the brain. As Jim said chemo doesn’t often make it into the brain because of the protective barrier known as the blood/brain barrier. The treatment that targets bone mets are the Bisphosphonates such as zometa. So when reading research about bone mets, metastatic lung cancer, etc., systemic treatment efficacy includes efficacy anywhere outside the brain including bone but there are no specific anticancer agents that target bone. I hope you do well and are feeling alright. This reply was modified 1 week, 4 days ago by catdander forum moderator catdander forum moderator. masalovai The literature also says that the effect of chemo is quiet limited for bone mets , specifically in lung cancer cases , but I am sure that some chemo agents could be more effective than others. Unfortunately there is very limited publications in this subject. I’ve seen in this side that doctors participate to discussions. Is there any chance to have their opinion…….? Another question: I found just a few recent communications on the subject of lung cancer in this side. All other discussions are quiet old ….. probably I don5 know where to look. Thank you very much again for your very valuable comments, your time and wish to help people. All the best Irina March 19, 2018 at 12:04 am #1294117 masalovai https://www.ncbi.nlm.nih.gov/pubmed/25777347 Some other publications are also available. I just wonder if it could be safe with my chemo combo, particularly with Avastin…. I am receiving Carbo,Alimta Avastin. My second cycle is next week. I also receive Zometa ones in 3 weeks. March 20, 2018 at 2:49 pm #1294120 The study you mention above seems to be the only clinical trial on nsclc and Disulfiram. This trial really only shows that it’s safe and worth studying more but much too small to say adding disulfiram raises survival rates. There are ongoing trials for other cancers so that’s better than nothing. If trials in breast cancer and prostate cancer turn out positive then it’s more likely to be considered to be studied in lung cancer. It’s difficult to get funded for this level of research and it doesn’t sound like there’s much monetary incentive to study disulfiram for the pharmaceutical cos. That’s why the wonderful organizations that raise money for breast cancer are so important. I used to be jealous that breast cancer got all the attention and funding but it’s paid for good research that benefits lung cancer as well. Our faculty occasionally comments on the forums but not regularly like they used to. I know they can add a lot of reassurance and credence to the discussion and that’s why we use the blog and forum posts as resources. I hope we are still able to help you understand your options moving forward. All best, March 21, 2018 at 1:36 pm #1294123 masalovai Thank you very much for useful information and all support. Wish you all the best with your journey. Irina |
Does standard chemo treat bone metastasis? | General NSCLC | Anonymous (not verified) | ||
March 22, 2018 at 11:53 pm #1294125 mazza55 My clinician read this out to me as though it was unimportant, and continued straight past it. I asked what these sclerotic lesions mean. He said “possibly some small secondaries that have responded to treatment”. But it is the first time since I was diagnosed in 2013 there has ever been any mention of anything in my spine. I was so shocked I couldn’t speak, couldn’t think of a follow up question. Clinician said all good, scan shows still stable, and he was in a hurry so appointment ended before I could even collect my thoughts. Later that day I rang the nurse coordinator and asked for her help as I was quite distressed. She is going to check and get back to me. Now 4 days later no answer yet. I’m struggling a bit. Are you able to shed any light on this kind of finding please? I hope this is ok to ask here. I don’t have copies of the ct scan reports mentioned above, except for latest one mentioning sclerotic lesions. Thanks in advance. March 23, 2018 at 7:18 am #1294126 scohn Glad to hear that the osmertinib worked so well for you in the FLAUTA trial. I am sure the moderators will answer, but I just wanted to let you know some of my wife’s experience. In the course of the last three years, my wife’s CT scans have occasionally shown sclerotic lesions of the bone in places we didn’t even know had cancer. The explanation from her oncologist is that often the bone will have sites at where the cancer resides and is too small to be easily detected. But, once the chemotherapy is successful in reducing or removing the cancer in those spots, the bone regrows into the places where the cancer had been residing, resulting in a slightly greater bone density – resulting in what shows up as sclerotic (i.e. more solid) spots. Basically our oncologist said that in conjunction with chemotherapy those sclerotic spots almost always suggest places where the chemotherapy has been working and the bone is naturally regrowing. I hope you continue to have great check-ups. Best, March 23, 2018 at 7:35 am #1294127 Welcome to GRACE. Congratulations on the great response to therapy. I’m sorry that the bone lesion finding is causing you so much concern. Dr. Pennell has said this about sclerotic lesions: “The truth is sclerotic lesions are about impossible to interpret, but most lung cancer lesions are either lytic or mixed lytic and sclerotic, so increased sclerosis might still give a clue that it is improved versus worsened. But for pure sclerotic lesions, it can be hard to tell much unless they are clearly getting bigger.” – http://cancergrace.org/forums/index.php?topic=11492.msg95007#msg95007 With this in mind, it may not be surprising that these lesions were not mentioned previously, as lung cancer lesions would be expected to have at least some lytic component. Sclerosis can appear when bone repairs itself and may actually make the lesion look larger, since the new bone appears bright white on a CT scan. If you are still concerned and not getting satisfactory answers from your doctor, a second opinion might be in order. Getting a fresh set of eyes on your scans and other medical records may be all you need to provide reassurance. JimC Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19 March 23, 2018 at 7:39 am #1294128 GRACE member scohn responded to you while I was finishing my post, and I agree completely with his statements. If there ever was cancer in those bone sites (not at all clear that it was), then the increase in sclerosis could certainly reflect regrowth of bones in areas in which the systemic treatment was successful. JimC Jul 2008 Wife Liz (51/never smoker) Dx Stage IV NSCLC EGFR exon 19 March 23, 2018 at 6:18 pm #1294129 mazza55 March 23, 2018 at 6:35 pm #1294130 mazza55 Was there earlier indication of this in scans of last July, September and December, and if so why was I not told? If it’s likely that small unidentified secondaries were there before I even started in the FLAURA study in July 2015, would it take that long for them to now appear as sclerotic lesions? If these lesions are possibly due to something other than secondaries, what could that something else be? So thank you both. I had trouble processing the info of “sclerotic lesions” as reported this week as it was such a shock. At least now I am armed with good questions that may get me an adequate explanation. Thanks again! March 24, 2018 at 9:52 am #1294133 I think you’ve created an excellent set of questions, and I hope you have a productive discussion with your oncologist. Please let us know if you have further questions or updates. JimC |
Sclerotic lesions in T4 and T5 | General NSCLC | Anonymous (not verified) |