Dedifferentiated adenocarcinoma
Ladies, first of all I admire your strength and thankful for this forum...
I'm writing on behalf of my mother, she is just 58 years young and has been diagnosed with dedifferentiated adenocarcinoma stage 2. She had her surgery on November 21st and this went well and her gyn/onc from Cleveland clinic cancer center very optimistic. She was recovering and waiting to start her sandwich of chemo and radiation. Unfortunately and to everyone's shock she had a recurrance diagnosed beginning of january before she even started chemo. It manifested as back pain, biopsy confirmed cancer in pelvis. Yesterday she completed her 3rd cycle of chemo, now we have an appointment with radiation oncologist next monday and mid treatment scan march 5th followed by some more appointments. Unfortunately her back pain returned last week, not the same kind as the one in january but terrifying to us both.
I'm trying to do all I possibly can, she lives with me now as she is very scared and depressed and will not do well on her own.
I'd appreciate any advice, suggestions, anything really...how to help her and make this all better. She wasn't given any prognosis but she keeps talking about death every day and it's just unbearable.
Prayers to all of you, thank you
-Maryna
Comments
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Denise66, thank you for theDenise66 said:Hello,
Hello,
I am very sorry to hear about your Mom. Is your Mothers pain under control? What are the doctors proposing for treatment?
What grade was her cancer? How was the metastasis discovered?
Prayers to you and your mother .
Denise66, thank you for the reply...
Her grade is IV, which is a mix of grade 2 and undifferentiated component. 48 lymph nodes were examined as well and all clear.
December 14th I took her to emergency room as she was feeling weak and overall fatigued. Clear scan, we were sent home. Then came the back pain. We didn't think much of it as the scan was clear. Anyhow, another trip to er january 2and and multiple masses discovered. Transfer to Cleveland clinic (I live in a smaller town nearby), there at first they were thinking it's just fluid collection from recent surgery, but did a biopsy anyway. She started chemo the same day as results came and pain was gone in a week or so. Now it's back in different location, milder but present. I got her in with an oncologist here in my town, he manages her pain much better than the surgeon I think.
Sorry for all the talking, it's been a long winter for us....
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Has you Mom sent her tumor
Has you Mom sent her tumor for Foundation One testing? Has she had genetic testing? Does she have Lynch Syndrome?
I have never heard of grade 4 cells. There may be other women in the board who are more familiar with this? Also, there are many women who have had recurrances that can provide you with very valuable information.
I’m very happy to hear your Mom‘s pain is under control.
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They tested the tumor atDenise66 said:Has you Mom sent her tumor
Has you Mom sent her tumor for Foundation One testing? Has she had genetic testing? Does she have Lynch Syndrome?
I have never heard of grade 4 cells. There may be other women in the board who are more familiar with this? Also, there are many women who have had recurrances that can provide you with very valuable information.
I’m very happy to hear your Mom‘s pain is under control.
They tested the tumor at Cleveland, said most likely not Lynch...my maternal grandmother had colon cancer though, but it was just cured with surgery.
Grade 4 are not the cells as far as I understand....it's a tumor made of 2 types of cells, low grade and undeferrentiated ones, very aggressive, obviously.
I'm happy she is comfortable too, it's the worst to see her suffer
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Treatment is rough
I thought that was a typo at first, but when I looked it up I found that it's an iteration of uterine cancer that's news to me. It sounds like it's aggressive like the other rarer types. One can see that by how your mother's cancer is behaving. We've had two other members recently whose cancers grew during chemo and now this has me wondering if they were misdiagnosed and perhaps had this form of adenocarcinoma, too.
Regardless of this being a rare cancer, you aren't so much looking for help understanding it, but rather for help with how it is impacting your mother. You must be in your 30's like my daughter was when I was diagnosed at about the same age as your mother (59). You have certainly taken a lot on your shoulders and we bless you for doing that because everyone needs someone when they have to fight cancer. Just don't forget to take care of yourself during all of this, too.
I get the sense that what's the hardest on you is your mother venting her loss of hope and distress from pain or exhaustion that treatment can cause onto you. What you both need is support beyond what just the two of you can give to each other. Bring this up at the Cleveland Clinic because they need to know that this is becoming a problem. They can offer your mother referrals to professional therapists for help with the depression and most likely also have pain management professionals. She needs to do this for you as much for herself.
I would also get her to spend some time reading the posts on this forum because there is a lot of practical advice, support, and understanding here from an active group who have or are experiencing what she is going through. No one is alone when they are part of this group and that includes caretakers. Cancer is a beast that scares us, hurts us, and brings us down, so we all help each other along while battling it.
Please feel free to get more specific as to what you actually need help with or to vent when you need a safe place to release some steam. There is a lot of experience here to draw from and we don't judge because we've all been there and done that. This is scary times for the both of you, but there's a lot of options for getting to the other side of what you are dealing with. Hang in there and we'll be here for you.
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Palliative care
might help too. It is not hospice care, but comfort care. They will help with issues of pain and mental distress. You could ask to talk to someone from their Palliative care service. It is does not stop patients from recieving treatment. it just helps with the other things you are talking about. Prayers for you and your mother. Cleveland Clinic is an excellent choice.
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Denise,Denise66 said:Om sure your mother is very
Om sure your mother is very scared. Sitting down with a good therapist and being placed on anti anxiety medication and anti deprsssnt medication may be very helpful. Is she on any of those?
Denise,
she is on Lexapro, at least it helps her sleep much better...I took her to a therapist once, but she hated the idea and said I'm her best therapist (yeah right) her anxiety and depression really started as soon as she has heard the news that she will need chemo and radiation. She was recovering from surgery in very good spirits. Now of course the pain and endless waiting for results and appointments is just not helping...
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Thank you so much for theMAbound said:Treatment is rough
I thought that was a typo at first, but when I looked it up I found that it's an iteration of uterine cancer that's news to me. It sounds like it's aggressive like the other rarer types. One can see that by how your mother's cancer is behaving. We've had two other members recently whose cancers grew during chemo and now this has me wondering if they were misdiagnosed and perhaps had this form of adenocarcinoma, too.
Regardless of this being a rare cancer, you aren't so much looking for help understanding it, but rather for help with how it is impacting your mother. You must be in your 30's like my daughter was when I was diagnosed at about the same age as your mother (59). You have certainly taken a lot on your shoulders and we bless you for doing that because everyone needs someone when they have to fight cancer. Just don't forget to take care of yourself during all of this, too.
I get the sense that what's the hardest on you is your mother venting her loss of hope and distress from pain or exhaustion that treatment can cause onto you. What you both need is support beyond what just the two of you can give to each other. Bring this up at the Cleveland Clinic because they need to know that this is becoming a problem. They can offer your mother referrals to professional therapists for help with the depression and most likely also have pain management professionals. She needs to do this for you as much for herself.
I would also get her to spend some time reading the posts on this forum because there is a lot of practical advice, support, and understanding here from an active group who have or are experiencing what she is going through. No one is alone when they are part of this group and that includes caretakers. Cancer is a beast that scares us, hurts us, and brings us down, so we all help each other along while battling it.
Please feel free to get more specific as to what you actually need help with or to vent when you need a safe place to release some steam. There is a lot of experience here to draw from and we don't judge because we've all been there and done that. This is scary times for the both of you, but there's a lot of options for getting to the other side of what you are dealing with. Hang in there and we'll be here for you.
Thank you so much for the kind words, I guess you are right, I possibly need to talk to people in similar situations and stop trying to cure her cancer and just leave it to God and doctors. As I mentioned, she is not a fan of therapists, and is refusing to read the forum, but I take a lot of advice from you ladies and tell her all about you and how the chemos are and how bravely you all fight. She is taking Lexapro religiously and at least now sleeps at night. The talk of death is constant, but no real suicide intentions, Thank God. For now we are just getting through every day the best we can, just two of us, my yonger sister lives far away and is busy with work.
Her cancer is rare, and very frequently misdiagnosed as biopsy before surgery can sometimes get just the cells from the low grade component. The gyn/onc said he does have a few ladies in his practice and they are all doing fine...I hope she will be one of them doing good in the future.
Until then I'll be here venting and asking for advice.
Thank you and prayers for all.
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Thank you so very much,Forherself said:Palliative care
might help too. It is not hospice care, but comfort care. They will help with issues of pain and mental distress. You could ask to talk to someone from their Palliative care service. It is does not stop patients from recieving treatment. it just helps with the other things you are talking about. Prayers for you and your mother. Cleveland Clinic is an excellent choice.
Thank you so very much, unfortunatelly our cancer center in Erie doesnt have a dedicated palliative service, but her oncologist here is great at pain management so far, and overall has great bedside manners....probably will mention increasing anxiety next time, maybe her Lexapro dose needs adjustment. Just need to survive that mid treatment scan for now.
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Maybe they have a medical
social worker you could ask to see. They can help you cope. You have a lot on your plate. Your mother is lucky to have you. Feel free to share your struggles here. It is a safe place for that.
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We get itMarisha1981 said:Denise,
Denise,
she is on Lexapro, at least it helps her sleep much better...I took her to a therapist once, but she hated the idea and said I'm her best therapist (yeah right) her anxiety and depression really started as soon as she has heard the news that she will need chemo and radiation. She was recovering from surgery in very good spirits. Now of course the pain and endless waiting for results and appointments is just not helping...
You're just so much more handier and familiar for your mother to vent to. The problem is that she is not realizing that there is really no way for you to "get" her because you are experiencing this ordeal from a completely different perspective than she is.
Even if she doesn't want to participate in this group, she can certainly just "lurk" to get what she can from it. There are many here that do just that. I remember there was a lot of discussion about the "sandwich" method of treatment when I was in the midst of chemo in 2016. You or she may want to browse a bit there if she'd like to hear about others' experiences with it and what they did to get through it.
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Thank you all
Dear ladies,
thank you for all your kind words
It's the hardest thing to watch your mother being sick and not being able to do much. I'm trying just to be there for her and let her know I will take care of everything I can. We just have to get through this 3rd first week after chemo and take it day by day. Unfortunatelly, I had to call onco office today and ask for a stronger Fentanyl patch...25 mg doesn't seem to work anymore. I hope it's just some sort of chemo side effect and those drugs are doing the job and killing cancer every minute. The gyn/onc specialist said he only wanted to do 3 rounds and then radiation, so at least maybe there will be a break for her, not sure what to expect from radiation, but hopefully it is easier...
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Marisha, I don't have anythngMarisha1981 said:Thank you all
Dear ladies,
thank you for all your kind words
It's the hardest thing to watch your mother being sick and not being able to do much. I'm trying just to be there for her and let her know I will take care of everything I can. We just have to get through this 3rd first week after chemo and take it day by day. Unfortunatelly, I had to call onco office today and ask for a stronger Fentanyl patch...25 mg doesn't seem to work anymore. I hope it's just some sort of chemo side effect and those drugs are doing the job and killing cancer every minute. The gyn/onc specialist said he only wanted to do 3 rounds and then radiation, so at least maybe there will be a break for her, not sure what to expect from radiation, but hopefully it is easier...
Marisha, I don't have anythng to add that the lovely ladies haven't already said. I just wanted to reach out to agree with your one day at a time approach. None of us fight alone and family and friends are what help us along the journey.
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Up next - Keytruda
Dear ladies...spring is just around the corner....!
Update on my mother...unfortunatelly, as was indicated by her increasing back pain....chemo didn't work. Stupid tumors grew and progressed and propably are laughing at us silly humans hoping for a cure.
Seen a local med oncologist and a Cleveland clinic original specialist, they talked with each other and agreed on starting Keytruda (not in combination with that other Lenvima or something like that), as tumor is microsatellite instability high), hoping to start this week.
Med oncologist is a sweetheart and manages my mom's pain for now, unfortunatelly she is very sleepy most of the time due to Fentanyl patch and 5 mg Oxycodone...plus had to start her on Xarelto due to incidentally discovered at chest CT scan pulmonary embolism. Ugh. Nothing in the bones though to cause the back pain she has.
Cleveland clinic specialist sound optimistic, but I kinda want to ask him not to give any promises he can't keep....
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KeytrudaMarisha1981 said:Up next - Keytruda
Dear ladies...spring is just around the corner....!
Update on my mother...unfortunatelly, as was indicated by her increasing back pain....chemo didn't work. Stupid tumors grew and progressed and propably are laughing at us silly humans hoping for a cure.
Seen a local med oncologist and a Cleveland clinic original specialist, they talked with each other and agreed on starting Keytruda (not in combination with that other Lenvima or something like that), as tumor is microsatellite instability high), hoping to start this week.
Med oncologist is a sweetheart and manages my mom's pain for now, unfortunatelly she is very sleepy most of the time due to Fentanyl patch and 5 mg Oxycodone...plus had to start her on Xarelto due to incidentally discovered at chest CT scan pulmonary embolism. Ugh. Nothing in the bones though to cause the back pain she has.
Cleveland clinic specialist sound optimistic, but I kinda want to ask him not to give any promises he can't keep....
I'm sorry to hear that the chemo was not helpful for your mother. But I'm glad to hear that the doctors will try Keytruda next. While it doesn't work for everyone, it certainly can be effective for many people with microsatellite instability. I do hope that your mother is one of them. There were a couple of recent posts about Keytruda that you may want to read, if you haven't already. Just scroll down the topic list to find Keytruda in the title.
I know this has been a very difficult time for you and your mother. I hope that while she is resting, you're able to take a little time for yourself too. Please come back and let us know how she is doing on the new regimen.
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Best wishesMarisha1981 said:Up next - Keytruda
Dear ladies...spring is just around the corner....!
Update on my mother...unfortunatelly, as was indicated by her increasing back pain....chemo didn't work. Stupid tumors grew and progressed and propably are laughing at us silly humans hoping for a cure.
Seen a local med oncologist and a Cleveland clinic original specialist, they talked with each other and agreed on starting Keytruda (not in combination with that other Lenvima or something like that), as tumor is microsatellite instability high), hoping to start this week.
Med oncologist is a sweetheart and manages my mom's pain for now, unfortunatelly she is very sleepy most of the time due to Fentanyl patch and 5 mg Oxycodone...plus had to start her on Xarelto due to incidentally discovered at chest CT scan pulmonary embolism. Ugh. Nothing in the bones though to cause the back pain she has.
Cleveland clinic specialist sound optimistic, but I kinda want to ask him not to give any promises he can't keep....
Though this is a tough time for your mother and you, know that we are all praying and sending well thoughts.
Chemo, then just an aromatase inhibitor didn't work for me, but then I got onto Ibrance and it's been over two years. Keep hoping.
Warm wishes,
Corby
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May 30, 2020
Dear ladies,
unfortunatelly I returned to share the news of my mother passing on May 30th. She was very peaceful and not in any pain, I was with her for the last 2 months almost 24/7
I hope her sad story raises awareness about this horrible disease and especially the less-known but very aggressive type she was unlucky to have - dedifferentiated adenocarcinoma. She was diagnoses as stage 2 and was only able to fight for 7 short months.
Keep fighting and pray for the cure.
-Maryna
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My condolences
Maryna, I'm so sorry to hear about your mother's passing. These aggressive types of cancer can be so difficult to treat once they recur. I'm sure all your help during her various treatments and your constant presence the last two months before she died were of great comfort to her.
I've added this link to the Tribute page: https://csn.cancer.org/node/320863
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