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Has anyone dealt with extensive distant lymph node involvement?

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LoriCA
LoriCA Member Posts: 671

I tried searching the forum but the only posts I find are about regional (mammary and axilla) lymph node involvement. I have extensive lymph node involvement from my supraclavicular down through "multiple clusters" throughout my chest and abdomen. My last scan showed significant progression in the lymph system after my non-cancer side supraclavicular swelled like a golf ball. I'm not finding much in the way of research or studies about distant node involvement other than a study that said that very few chemo drugs are able to penetrate the lymph nodes, and that very little research has been done because the focus is primarily on how mets spread via the blood, not the lymph system. The article didn't state what those few chemo drugs are, so I'm wondering if anyone has successfully treated distant lymph node mets and what chemo they used, esp anyone who is HER2+ because I'm wondering if a targeted drug on its own is going to be a waste of time.

My liver mets have resolved and my other organs are still clear for now (I have other non-organ active mets/tumors), but of course I'm concerned because I know that the lymphatic system is one of the primary ways mets can spread to organs, so we need to get on top of this before that happens again. I'm getting pretty discouraged because for the last 18 months, every time we beat it back one place it just pops up someplace new and this game of whack-a-mole is getting old and wearing me out.

I know it may seem silly to some, but researching and having information calms me down so I don't feel like I'm floundering around in the dark with my cancer running out of control, entirely at the mercy of others, and I like to be able to have intelligent conversations with my MO. It's very frustrating when I can't find any information at all, and just adds to my stress.

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  • nkb
    nkb Member Posts: 1,561
    edited September 2019
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    Lori ca-I don’t know anything about distant nodes- just wondering if radiation or excision are options? Or excision plus radiation. I realize that some of the nodes can’t be easily excised and some places can’t be radiated, but, wondering if radiation those that can be would cause an abscopal reaction?

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019
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    Thanks nkb, but no such luck. We were hoping to treat locally but my last scan shows that it's too extensive. Funny you mention radiating some of them and hoping for an abscopal reaction; we radiated my right side because it wasn't responding to chemo (I also have a tumor on that side that is tangled in my brachial nerves, plus had a return of IBC skin mets and my supraclavicular on that side was active, so we radiated everything from partial left breast around to a section on my back which included axilla, and from supraclavicular down to about 3" below my breast. 68 gray over ten weeks, to try to stop the spread) and the cancer immediately jumped over to the nodes on my left side and then kept spreading. So much for hoping for an abscopal reaction!

    And it's way too much for surgical removal - "multiple clusters" throughout upper abdominal and retroperitoneal, subcarinal. precarinal, mediastinum, paratracheal mediastinal, anterior superior mediastinal, precaval, periaortic, portacaval, mesenteric, a node anterior to my pancreas, plus now there are multiple new left supraclavicular nodes, multiple left and right cervical nodes in my neck, some other Level 5 node, and now the left axilla too. I think they gave up trying to list all of them because the report keeps stating "multiple new clusters" in X, "multiple new clusters" in Y, etc. and it seems that only my inguinal nodes aren't involved yet. Both my MO and RO feel that only a change in systemic treatment is appropriate at this point.

    Lori

  • JFL
    JFL Member Posts: 1,373
    edited September 2019
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    Lori, sorry to hear about the lymph node progression. I totally understand about information being calming. I didn't have a lot of distant lymph nodes but did have 2, 2cm tumors in my supraclavical lymph nodes at mets diagnosis. One side grew up to 2cm over a series of months, followed by the other side doing the same. I could see and feel them. They shrunk on hormone therapy and never returned in nearly 5 years. My bone mets have returned once and my liver mets have progressed many times during that same time period. If you have organs responding to treatment but not the nodes, you may want to try adding on a different type of therapy on top of what is already working on the other areas. My liver became resistant to hormone therapy years ago but I am taking it now with chemo and the hormone therapy seems to have helped put my recent bone mets flare-up back in check.

  • Daniel86
    Daniel86 Member Posts: 207
    edited September 2019
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    Hey Lori

    I gave a quick look at the Italian pages regarding lymph node mets as I am sure you've extensively researched through the English ones. I came across whole body hyperthermia as a suggestion for head-neck cancers. Is that something you've looked into? I personally think the key to some of these more rare manifestations might find some answers in treatments for other kind of cancers. I am well aware breast cancer acts its own way but I think there could also be some not studied yet commonality. I will be looking into this more later when I have time.

    Hang in there! Sending positive thoughts your way

    Daniel

  • illimae
    illimae Member Posts: 5,616
    edited September 2019
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    I don’t know if this helps but I had a positive supraclavicular node at initial diagnosis. My chemo was abraxane/herceptin/perjeta. It worked well but I did still have some micro metastasis remaining in a few of the axillary nodes tested post chemo.

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019
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    JFL thank you. Yes chemo would be in addition to Herceptin and Perjeta, unless I decide to move on to Kadcyla/TDM-1 which is a combination of Herceptin and a chemo drug. Even though I keep getting mets in new places, my MO believes Herceptin is keeping my bones and organs in check and slowing progression even though it isn't stopping it, so we've been sticking with the "Herceptin plus" routine.

    Thanks illimae, I too had a great response to THP at my initial Dx, and with IBC I had supraclavicular and axillary nodes involved, which is why my MO thought it might work again. But when we tried it the second time one of my tumors grew 2cm in 2 months and was causing significant pain, which is when they declared it chemo resistant and decided to try frying it to try to slow it down. I'm not sure that it makes sense to try another taxane right now since I had absolutely no response to a taxane last time. I think it's probably time to try something different. IBC does have inherent resistance problems, which is why after reading that article I'm really hoping to learn which chemo drugs do penetrate lymph nodes so we can narrow down which ones to try. The scariest thing for me is when I spend two months on a chemo that doesn't work, then I have to get a new scan to prove it's not working but the insurance company wants 90 days between scans, then I'm off treatment while waiting for the new scan results (because why continue a treatment that obviously isn't working), then the wait for everyone to decide what to try next, and then for the insurance company to approve it. Then if the next one doesn't work it's the same thing all over again. I probably wouldn't panic so much if I had an indolent cancer, but with this d*mn super aggressive cancer 3-4 months to find something that works is a very long time for me.

    Daniel thanks so much for doing that research, I really appreciate it, and thank you for your positive thoughts. Heat is an interesting idea, my MO had me use heat locally on a tumor site one time when I was on chemo to accelerate the response, so it's certainly an idea he'd be open to discussing. The only research I could find on distant nodes was in prostate and colon cancers, and this recent one that does include breast cancer and discusses how in addition to disseminating tumor cells, it's thought that lymph vessels can actually facilitate tumor growth through immune suppression. But it's a summary of recent progress in understanding lymph node mets and some new treatment theories they are investigating (such as immunoengineering), so it doesn't have any easy answers for me.

    Growth and Immune Evasion of Lymph Node Metastasis


    I guess I'm probably hoping to find information that doesn't exist yet, and will just have to give something a try and keep my fingers crossed. Anyway, It looks like what I'm experiencing isn't a common occurrence. It seems like every time I turn around I'm throwing my doctors a curve ball, I don't understand why I can't just be "normal" haha! I really appreciate everyone's responses. If we do find something that does work, I'll make sure to update in case someone comes along in the future with this problem.

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019
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    Lori I have a question. I had a pet scan the 20th of this month and it onky showed like two lyphm nodes from what my petscan report said. Now, if the supraclavicular was cancerous wouldn’t that be noted on the pet/ct

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019
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    Missmom if the supraclavicular was cancerous it should show metabolic activity on a PET scan, but metabolic activity alone doesn't necessarily mean it is cancerous. It could be an immune system response.

    Anyway, even if your supraclavicular was affected you would still only be Stage 3 because that is considered locoregional.

  • Daniel86
    Daniel86 Member Posts: 207
    edited September 2019
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    Lori,

    I found the research paper about hyperthermia in HN cancers in English as well. Here you go in case you want to give it a go.

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5302995/

  • missmom79
    missmom79 Member Posts: 90
    edited September 2019
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    thank you lori

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019
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    Thank you Daniel, I appreciate that. We have do a Hyperthermia Center here in L.A. but they do ultrasound hyperthermia, which is limited to local or regional applications. And my hospital does Hyperthermia using more advanced techniques again limited to local applications targeting specific tumors. Appears I would need Whole Body Hyperthermia to cover an area from my skull down through my abdomen, but as I'm reading the methods used for WBH (heated chamber, immersion in heated water, or wrapped in a heating blanket), I wonder if I can't just try something similar at home. They only use a temp of 106-108F. Lol, two weeks ago I could've just head out to the desert for temperatures much hotter than that!

    I appreciate that you've given me something to look into because I never would've thought about hyperthermia as a possible treatment method.

  • nkb
    nkb Member Posts: 1,561
    edited September 2019
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    LoriCA- looking at article about prostate cancer treatments could be useful since there is thinking that prostate has some similarities to breast. I remember Z did some hyperthermia treatments in Japan.

    The insurance company 90 day rule for scan approvals seem like a travesty that should be addressed. Can't the oncologist do anything to convince the insurance company that waiting for these scans is detrimental to your health? This seem rather common throughout the insurance world, including complete denials.

    I haven't listened to the last 4 podcasts of Dr Neil Love on the Breast Cancer Update Podcast, but, they are about Her2+ cancers so may be worth listening to. He is interviewing breast cancer researchers and I have learned a lot from these podcasts.

  • LoriCA
    LoriCA Member Posts: 671
    edited September 2019
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    Thanks Nkb. I'm still waiting to hear back from my MO. I did ask him to consider moving on to Kadcyla/TDM-1 as it's the least toxic of my options, but maybe that is just wishful thinking on my part because I'm not looking forward to spending my third holiday season in a row on a nasty chemo. Guess I need to just suck it up and realize that this is my life now.

    I haven't had any complete denials for a scan (yet?). Seems most of the people who get denials are doing regular scans for monitoring purposes, and we only scan when we suspect a problem (which is still several times a year). The 90-day thing really only comes up when a chemo fails right off the bat and we have an urgent need to try something else, but my MO has always been able to get it approved in that situation.

  • nkb
    nkb Member Posts: 1,561
    edited October 2019
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    how is it going Lori with your decision re treatment

  • LoriCA
    LoriCA Member Posts: 671
    edited October 2019
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    I went with Kadcyla and started yesterday. Maybe a somewhat selfish decision - absent solid evidence that another chemo would work better, at least I'll get to keep my hair through the holidays and hopefully the SEs will be tolerable. My last two holiday seasons were pretty miserable, esp last year when chemo failed right off the bat and I kept going downhill, although I suppose the prior year was worse because my oncologist told my husband to call the family in because he didn't think I would pull through, but I was in a morphine haze so it was harder on him than it was on me. It would mean a lot to me if I can give my husband a more normal Christmas this year and I think my best chances of that is with Kadcyla. Our wedding anniversary is in October, Thanksgiving in November, Christmas in December, and my birthday in January, it can be emotionally tough on both of us to get through all of that when I'm in pain and struggling with side effects. I have some pretty rotten timing that things always become urgent this time of year.

    And most HER2 trials require that both Herceptin and Kadcyla have failed because Kadcyla is the standard second line of treatment. If/when Kadcyla fails, I can always go back to Herceptin plus a chemo or try another HER2 drug, and I'd be eligible for more trials.

  • nkb
    nkb Member Posts: 1,561
    edited October 2019
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    LoriCa- your decision makes perfect sense to me, although I am fairly ignorant of HER 2+ disease options. I know that neratinib is being looked at also. I have followed it a bit with the podcasts and I am going to listen to the 4 new ones as well. They are technical- meant for Community MOs but, it is repetitious enough that I get most of it. Seems like we all have to plan a few steps ahead so we won’t be disqualified for some next trial etc

    Hair to me is very important - it is primal and equates with normal and healthy I would try cold caps if losing hair was in the mix with my next treatment. I had great difficulty with the hair loss due to privacy concerns as well

    The holidays are hard and it is really hard on the DHs. I keep my kids out of the little picture as I realize that only the big picture makes sense to share. Do you go to a support group or have a therapist to discuss it “all you want” so you can have other discussions with DH? Those two things didn’t work for me yet, but, I met with a BCO member who lives 30 minutes away and it was a relief to just talk non stop with someone who truly got it without worrying she would feel sorry for me Etc. We email often as well.

    I have also changed to a more spontaneous person to create memories with my kids. Fly to LA for the weekend or to babysit, invite one of my kids on our vacation. Spend money more freely. Try to be there for others. I thought it was interesting that several people said it was an acquaintance who helped them through chemo and hung in there with them not a family member or close friend.

    I hope your holidays and other specials days are happy and serene.

  • LoriCA
    LoriCA Member Posts: 671
    edited October 2019
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    I am fortunate to have a really great metastatic support group just a few minutes away at my local hospital.

    Sounds like you are doing a great job living your life and spending time with family. I haven't been able to do any traveling or much of anything else this past year because treatments, scans and consults have taken up so much of my time, plus I wasn't feeling so hot through much of the year. Through June I had over 72 medical appointments and I stopped counting haha! It's really worn me out, but hopefully Kadcyla works for me and the side effects are minimal so I can get off the merry-go-around for a while.

    Thanks for your good thoughts Nkb, I hope your holidays are happy too!

  • nkb
    nkb Member Posts: 1,561
    edited October 2019
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    Lori- you’ve been through a lot! I am really glad that you have support from various sources. and I hope that Kadcyla is the magic formula you need. Please let me know how it goes.

  • dorimak
    dorimak Member Posts: 89
    edited October 2019
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    LoriCA, I received my stage iv dx a few years ago when I noticed a lump between my breasts. The PET showed metastasis to lymph nodes under my sternum and suspicious activity in lymph nodes in one lung. I am ER+, PR+ and HER2-. . For some reason I have not responded to the AI's but targeted treatments along with the AIs and now I'm on Xeloda. Each targeted treatment kept me stable for a bit and for the first time I had regression with the Xeloda which is a chemo drug. So in my case the chemo did penetrate the lymph nodes. Don't hesitate to get a second opinion if possible. I've been to three different MOs mainly for geographical reasons and they can differ. In fact I had a dreadful experience with an RO that treated brain mets (long story) and I moved and the new RO isi completely different. First RO constantly talked about WBR which is not the standard of care any more for those with a limited number of mets. I know your situation is entirely different but my point is that first RO was limited in his thinking and maybe another MO might have some insight for your situation.

  • Alffee
    Alffee Member Posts: 1
    edited March 2021
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    Hi Lori! I noticed this post was from a couple years ago but it sounds like you were dealing with something similar to me. In December I was diagnosed with mets, recurrence in some lymph nodes in my chest. So far, that is the only place it is showing up. I had a complete response the first time around 4 years ago. I, like you, am having a hard time finding much information on metastasis to distant lymph nodes. I am also Her2 positive. I am currently towards the end of 12 weekly treatments of taxol with herceptin and perjeta every 3 weeks. My tumor marker has come back down into the normal range but I won't have a scan until the end of the 12 weeks to know for sure what is happening inside. I will be discussing radiation options with my MO this week. I guess it's a difficult area for radiation and it can cause other problems. I had 25 radiation treatments last go around. I just wanted to jump in to see how you are and if you have any new information or if there are any other forums that may have more discussion on this particular metastasis location.

    I hope you are doing well!!