A website to provide support for people who have or have had any type of cancer, for their caregivers and for their family members.
Page 1 of 7 123 ... LastLast
Results 1 to 10 of 70

Thread: Update on Treatment and PetScan

  1. #1

    Update on Treatment and PetScan

    This is my update of what has been going on. Joe’s chemo was once a week for 3 weeks and then a Neulasta injection and 14 days off. He finished 3 cycles of that by Feb. 15. His 21st and last radiation treatment of the ‘25 planned’ was Feb. 9. He just could not finish. His WBCs and platelets were really bad some weeks. It got harder as the weeks went on to withstand treatments. He also had some Neupogen a few times due to bad blood work. All the medicines and treatments can cause so many side effects. He had weeks he was so so and others that he felt pretty bad.

    PetScan done Feb. 22 and we saw the Oncologist Feb, 23. The news was good. There is one lymph node in lung with activity. Other lymph nodes or nodules are resolved or unchanged. The spine part looks okay. This is the best I can word this. It amounts to this Pet Scan shows little activity, compared to the Dec. one.

    Personally, I felt the Oncology Dr was as pleased with this PetScan as he was surprised at the Dec. one. As a reminder, there was an Oct scan and minimal problem but in December had multiple problems. Chemo therapy will be resumed March 3 and in the same manner as previous and still Navelbine. Finally had a couple blood draws that look almost normal in all areas. We are so thankful for that. Joe finally started feeling a little better the first of this week but now is dragging some again. Always some issues.

    Hope he will get more of a reprieve from the way he feels. It still remains a battle but we have gained ground. We are still assembling paper work for checking into clinical trials/studies. Some has been sent and we are still trying to get some of it together. We thank everyone for the thoughts and prayers.

    So much of what I have read here recently has been very helpful to me. Some from people just beginning, others from ones that might be about where we are or have been, and then those whose family members lost the battle. I am very thankful for the people that do post here.

    One of the things that I tend to forget is that even with the NSCLC it can take a bad turn in a flash. I have to stay on guard so I am not thrown off balance. I am so thankful for the report we got this time. I stay more positive than my son and my husband. I got more worried tho as the Scan time got closer. The real people like the ones here is what gives me hope.

    I have a question and probably for some of the senior members. Joe had the two lower lobes of his right lung removed in 2008. He keeps complaining of pain. The Oncologist refers to muscles or pain that may just continue to be there for whatever reason. His Pet Scan looks good now. What could possibly cause pain that would run like across his chest maybe from one lung to the other, and then downward at the center. I always see him reaching up on his chest like it is bothering him.

    He doesn’t know who else to ask. He feels something is wrong. Usually he is right if insistent. Once he needed a Stent for a blocked artery. Cardiac doctors kept clearing him and it took several doctors and 18 months before he went to the Heart Institute and they found the blockage. If we go by what he feels, it is more than a muscle problem. Any ideas?
    Husband (year of birth 1941) dx'd 2008 NSCLC - Squamous Cell Carcinoma
    Chemo and Radiation Treatments together. Allergic reaction to Taxol & Taxotere.
    The Story 2008 to 1/2011: http://www.cancerforums.net/about9079.html

    2010/2011: Returned & spread to lower lumbar bone/marrow. Stage 4.
    Chemo & Radiation together. Allergic reaction to Erbitux. Chemo was only Navelbine.
    The Story continues 2/2011: Story continues 2/2011: http://tinyurl.com/68qpmym

  2. #2
    Hi;

    I am an new person, on this link..and I have had my fill, of Dr's.

    I have stage 4 lung cancer that has spread, after my rad...for another.

    I am sorry, but, I am very bitter about the Dr.'s

    Love Barb

  3. #3
    Maryaz-Im sorry your family has to go through all this stress. I dont know much about this type of cancer and am basically from the colon cancer posting of moms battle with stage IV. It is good hearing from people with actual experiences.Somehow all those little questions you want to ask the doctors somehow seems to get lost and never answered either there is not enough time,we are too stressed to think at the time of the approintment orthey really cant say for sure-such as the pain question you were asking.
    Mom has had a pain in her side since before Thanksgiving-enough to keep her from moving alot at times. When she told her oncologist he says he couldnt get nothing from the physical and that its a good chance its a pulled groin.
    she has a scan the end of march which will Im assuming will tell all(these are always dreaded.).
    But Im thinking-if it comes up that its not the cancer reaccureing-maybe its just the body adjusting from the shock of too many surgeries(moms had 4 already)2 rounds of chemo direct line , 2 maintenence and 1 radiation. soo And if its not that Im also thinking scar tissue. my brother sid just from laproscopy gallbladder surgery his side hurt for over four months and thats minor surgery these days. with major like moms and Joes imagine the scar tissue. I pray for both of their sakes that its something as simple as that. Theres always hope anyway. I hope for you someone has had the same experience to ease your mind a bit. take care and keep us posted-someone will show up sooner or later.
    MOMS Journey
    April06- Emergencysurgery,exploratory,10units blood,largetumor and 10inches of colon removed,temp.colostomy.diagnosed stage IV colon.
    oxyplatin,5fu
    Oct06-radiation,surgery,several lymphs,cervix,1 ovary,fallopian,40% remaining colon,large tumor to adipose tissue,appendix,gallbladder removed.permant colostomy/iliostomy
    oxyplatin,transfusion.
    April 07-xeloda-overdose
    surgery-1/3liver,partial diaphra, removed clipped and questionable spots oblated.
    port-port rejection-port removed 1week.
    picc line,5fu,oxyplatin,camptosar.
    Oct-08-surgery-remaining ovary engulfed in tumor,partial bone scrape.
    transfusion central line TPN 1 month.
    oct-09-surgery tumor ,colon and jejuneum removed.
    xeloda reduced. severe dehydration,heart attack.
    april10-remission-avistan
    oct-10-erbitux,camptosar
    Jan-11-5fu
    mar-11 return to original site-oxyplatin,5fu
    Aug-11-erbitux,camptosar.
    dec-28-blood transfusion
    dec-30-back to chemo erbitux camtosar
    Jan-16 injections neulasta and aranesp
    feb16-transfusion
    feb 21-Tumor found stomach,liver, and liver "hot spots" inflamed lymph in rt ureter in kidney causing obstruction-surgery schedualed Mar 16.
    march 16/12-no more kidney obstruction not lymph ...dehydration is causing blockage, two litters blood for anemia, stomach liver tumor small-med,abalation, 1 hidden tumor deep in muscle mass on side flank(hid from scans) -gone!
    june/15/12-blood transfusion
    starting a regimine of celebrex
    aug/16/12-blood transfusion
    aug/30-12 discontinued celebrex -failure one kidney. needed to see urologist
    sept/10-12-good urologist report one kidney functioning well for now.
    oct/23/12-chemo pill Stivarga(regorafenib)
    Nov/22/12-blood transfusion
    dec/18/12-blood transfusion chemo pill dosage cut back to 1 pill.
    Feb/21/13 neulasta injection
    Feb/22/13-blood transfusion. still taking stivarga.
    mar/20/13-arenespt injection rehydration and magnesium IV
    mar/21/13-acute renal failure-kidney infection
    april/1/13.-recovery from 4 day coma infection cleared/4 units blood/ off stivarga/starting rehab therapy,
    swollen hand no apparent reason black spots in vision off and on. both cleared up.
    may/22/13-home oxycodone for pain shoulder neck arm
    june/1/13 pain subsided off oxy onto aleve
    june/09/13-pain back off aleve on vicodin
    june 10/13-cancer in back/neck- starting radiation for arm neck and shoulder pain.
    june24/13-last day of radiation-on steroids
    july1/13-swollen legs and feet-lasix off steroids still on vicodin and xanax
    july 23/13 vicodin cut in half blood transfusion.
    sept/6/13-off all pain meds since late aug
    scan results fracture in spine mid back
    sept/12/13-spine healing on its own,weaning off steroids, no visible tumors.
    nov/7/13-edema both legs and one arm on lasix since oct.
    nov/21/13- leg edema subsiding still alot in one arm- she is talking but keeps her eyes closed. achy but no major pain. nurse and aide to visit once a week schedualed. having trouble standing.
    nov/24/13-sadly but peacefully moms cancer journey is at an end, she will start her new spiritual journey together hand in hand with dad.

  4. #4
    Super Moderator Top User
    Join Date
    Sep 2010
    Posts
    2,727
    Hi 1Barbara, I am sorry that you have not had good experiences with your doctor's, I would like to suggest that you start a new tread on thi forum of your own. We would really like to hear from you and be able to offer some advice to improve your situation with your doctors. It's very scary to be diagnosed with stage 4 but in case you didn't know.... it can be managed. If you review some of the other threads here you will see that we have a lot of long time stage 4 members, so don't give up. Come back and fill us in on more details like the type of lung cancer, how old are you, where has it spread to and any treatment you have had so far. We have so many people here that have most likely walked in your footsteps and are ready to offer some encouragement. You're not alone here.
    Irish
    Irish,
    Caregiver to my Dad, who was diagnosed in June 2010 with Stage 1V NSCLC with single met to brain,
    He sadly lost his battle in August 2010 and we miss his smiling Irish blue eyes terribly.
    My Dad's story:
    http://www.cancerforums.net/threads/...th-how-he-died.

  5. #5
    Top User pbj11's Avatar
    Join Date
    May 2007
    Posts
    6,595
    Hi Mary,

    Read the update and am doing a little happy dance for the good results! Navelbine was a little wonder drug for my husband too. Chased away a lot of the cancer and he was on it for 19 weeks. I'll keep my fingers crossed for continued good results.

    Clinical trials will vary in availability to him, depending on how many lines of chemo he's already done and what types. They tend to shy away from heavily treated patients, because their goal is to get a product that has a high efficacy rate so that it's bumped into first or second line treatment protocols. So, that's the type of patients that they generally seek.

    I don't recall where he had the radiation. Sorry! Was it in the area of his lobectomy or where his current pain is located? (Almost said lobotomy! ) Radiation to that area can cause an odd feeling if there was any burning. Has this been an ongoing problem since his surgery or is it new? There are a huge number of nerves running through the chest area and during either VATS or normal surgery, they are all severed. It can cause a lot of pain and numb-like feeling in the area. Maybe some of the nerves are on the mend and creating odd pain while new connections are made. I know my husband dealt with numbness issues the entire time. Maybe it's adhesions. I hate that he feels something isn't 'right' after getting a good scan.

    Let's hope that he does well with his bloodwork and this re-start goes smoothly.

    God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  6. #6
    Sheila, thanks for your encouragement. I hope your Mother can get a reprieve. She has really been thru a lot.

    Barbara, do as Irish said and get something going that posters can give you more information that might be helpful to you. My husband is Stage 4 and I, for sure, am wanting him to fight this. I know some of them here that have been going on and that does give me hope.

    Pbj; I knew nothing about Navelbine when we started. I didn’t realize it was so good, or could be. I do know a little about Trials/Studies and drugs, but just not related to cancer. What you say is true and makes sense. Of course, the Oncologist said no Phase I or II or we will not be into anything with treatments that would be helping him. Has to be at least Level III. You have a good point. Glad I read that before we have a meeting. I will keep it in mind.

    Pbj; Joe’s radiation in 2008 was his lungs. That is where everything was the first time. Then they removed the 2 lower lobes of right lung. (Quote lobomy and tell her this is why I cannot use that word.). Your post is very interesting. I am going to copy and let him read it.

    Would a CTScan show something more in this respect than the PetScan. I know the PetScan lights up the cancer. Is the condition of the body shown the same in both. Thanks,

    Thank you all that help.
    Husband (year of birth 1941) dx'd 2008 NSCLC - Squamous Cell Carcinoma
    Chemo and Radiation Treatments together. Allergic reaction to Taxol & Taxotere.
    The Story 2008 to 1/2011: http://www.cancerforums.net/about9079.html

    2010/2011: Returned & spread to lower lumbar bone/marrow. Stage 4.
    Chemo & Radiation together. Allergic reaction to Erbitux. Chemo was only Navelbine.
    The Story continues 2/2011: Story continues 2/2011: http://tinyurl.com/68qpmym

  7. #7
    Top User pbj11's Avatar
    Join Date
    May 2007
    Posts
    6,595
    Hi Mary,

    Where was the radiation that he just completed? The 21 days.

    I shouldn't have said ALL nerves are severed, but the ones in the incision areas certainly were. He could also be experiencing 'referred' pain from some other area. One of my docs told me about that, as I had a problem in my back, but the pain was in other areas too. He told me it was referred pain and I told him that I wanted it referred somewhere else! Is he tense or holding himself differently? So many things can cause this, but nerves still strike me as tricky business, unless his most recent radiation has done something.

    A PET should show anything that a CT scan would, but maybe someone knows more about that subject. My husband usually only had PET's, unless they also did CT's at the same time and I didn't know. I don't recall reading a lot of CT reports though. Even a low SUV would raise a red flag that there was activity of some type in that area, whether an irritation or cancer.

    I know how scary things like this are because you always worry for every ping and pain. We sure did. Lung cancer is knowing the other shoe is going to drop, but not knowing when.

    When it comes to chemo, unless it's targeted therapy like Tarceva, it's a total pig in a poke whether and how well one will respond and for how long. Navelbine was a quick infusion and much lighter side effects, so that was a renewed quality time for us. They may up Joe's neupogen injections to a couple of days worth of shots if his WBC keeps plummeting. That was our original game plan, but he was lucky without tricky blood count problems until very late in the game.

    As for trials, we always figured there was enough available treatments that had FDA approval and we'd blow through what was available. It's a Catch-22, because after that, they don't want you.

    God bless and you know we're here if you have any more questions. I hope you are feeling okay yourself. I do worry about your health too.

    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  8. #8
    Hi pbj; Joe’s radiation was lumbar spine area. Referred pain?? I would want mine referred elsewhere too. (grin). What a thing. Doesn’t even make sense. Reminds of when they told me I had been on amnesia drugs. First reaction was weird but at least that makes sense.

    He is not tense of holding himself different. I don’t think this is from the recent radiation unless it is ‘referred pain’. I seriously never heard of that. I want to think it is the old area and maybe scar tissue doing something. But then when he refers to it going down, it makes no sense. He is going to have to get someone that can talk with him and have an idea.

    I do know that generally, not always, when Joe thinks something is there, it usually is. He gets Pet Scans so often. He never gets Cts anymore. He did get 3 MRIs Dec.13th for brain and thoracic spine and lumbar spine after the really bad Pet Scan. It seems these should have shown something if anything going on.

    I sure wish Joe didn’t have to add all his low blood issues with the treatments. We deal with what we are dealt. I am beginning to think there is something to what you said about having enough treatments available even without a trial. I guess it won’t hurt if they would see him tho. Might make a nice second opinion. Now that it has been explained to me here about trials, I wouldn’t think Joe would be a good candidate for them. It could sure raise up their side effects. Sort of joking there. I have to joke a little when I can. Most of the trials they have here are Phase 1 and 2 but there are a few.

    I am having problems taking care of me this time. Just harder but hope maybe it will slow down soon. With the daily radiation, really beats him up. Glad that is over. He is not really well but is keeping going with things now.

    Thank you all so much for the answers and the encouragement.
    Husband (year of birth 1941) dx'd 2008 NSCLC - Squamous Cell Carcinoma
    Chemo and Radiation Treatments together. Allergic reaction to Taxol & Taxotere.
    The Story 2008 to 1/2011: http://www.cancerforums.net/about9079.html

    2010/2011: Returned & spread to lower lumbar bone/marrow. Stage 4.
    Chemo & Radiation together. Allergic reaction to Erbitux. Chemo was only Navelbine.
    The Story continues 2/2011: Story continues 2/2011: http://tinyurl.com/68qpmym

  9. #9
    Top User pbj11's Avatar
    Join Date
    May 2007
    Posts
    6,595
    LOL Mary. So I'm not the only one who didn't get the referred pain thing. Maybe it's nerve related so the pain moves that way. Scrap that idea.

    Bless your heart for doing so much for your husband when I know you have your own fight with medical issues.

    I pray things slow down to let you play catch up physically.

    Hugs and God bless,
    PBJ
    Husband diagnosed with NSCLC Stage IV in 3/2005. Fought & lived over 2 1/2 years with multiple lines of treatment.

    Post describing our journey: http://cancerforums.net/viewtopic.ph...er=asc&start=0

    Left my embrace to live with our Heavenly Father in October of 2007 and now breathes with ease forever. I will miss this gentle, giving soul with the easy smile for the rest of my days, but have faith we will be together again. He's just getting a little break from me!

  10. #10
    Maryaz: Keep on posting, I'm only a newbie to this forum but I already say to my girlfriend, I just want to nip on and see if Mary has posted anything about Joe. You are providing a diamond service and though many people will never post, they are sharing your experience with you. You are both giving and receiving, even if you don't hear much back, your contribution is invaluable, keep up the good work, thinking of you,

    Daz

 

Similar Threads

  1. Dano Update: New Treatment
    By dano in forum Lung Cancer Forum
    Replies: 7
    Last Post: 08-29-2012, 01:26 AM
  2. 2 yrs since treatment update
    By johnr in forum Lymphoma - Hodgkin's and Non-Hodgkin's Lymphoma Forum
    Replies: 8
    Last Post: 10-23-2011, 06:27 PM
  3. Update / starting treatment
    By noli in forum Colon Cancer and Rectal Cancer Forum
    Replies: 4
    Last Post: 04-08-2010, 05:33 PM
  4. What happens now? he stopped treatment(6/6) update(7/15)
    By Verind in forum Pancreatic Cancer Forum
    Replies: 4
    Last Post: 07-22-2009, 08:32 PM
  5. update: Results of 1st PET After Treatment
    By B&H1997 in forum Lung Cancer Forum
    Replies: 6
    Last Post: 10-13-2008, 02:35 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •