Posted by sgt. pepper on May 27, 2020 10:18 am
Posted by Cynthia Mac on May 28, 2020 8:35 am
I already have a call in to his oncologist, so thank you, thank you!
Posted by Jackson on May 28, 2020 11:40 am
Posted by Cynthia Mac on May 30, 2020 8:10 am
Posted by LaurenMaria on May 31, 2020 11:11 pm
We started chemo, and she had a little bad spell, and then a good spell and then down again. We changed to an oncologist who is closer to us and she said that there was a "trial" for immunotherapy and she thinks mom's kidneys could handle it. WOW! I think I was more excited then anyone else b/c I had read about it. But, I had now read it was mostly for lung cancer so I also tried to contain myself. Then to my happy surprise, this drug is also particularly good to use against my mom's EXACT cancer!
So she has had 3 treatments, and the oncologist said it is too early before we can tell if she is responding to the drug. Unfortunately, my own eyes tell me it's not looking so good. We had to take her to the hospital 2 weeks ago b/c she wasn't keeping any food down, and her pain kept sitting at 6/7/8. We haven't been able to visit very often b/c of COVID, so not
sure if she is depressed or simply deteriorating,
her trajectory seems to be pointing down according to the nurses and hospital doctor. I'm going to call the oncologist tomorrow to see if even though mom seems to be getting worse, can this therapy still turn things around if she responds well to it? Or is this already an indicator that she isn't responding well. I thought I would post this status b/c it seems this is a new therapy and getting any feedback on it would be much appreciated. **Andrea**
Posted by Cynthia Mac on Jun 1, 2020 9:30 am
My dad is on pembroluzimab, too, for the lung cancer in the bullet above in your photo. He’s been on it about 9 months, and he’s been responding very well, but he recently has experienced some confusion, and is in the care of our local hospital. We don’t know the exact source of his confusion - it could be from several factors - but, at this point we do know it isn’t from further metastasis or from a stroke. The diagnostic testing continues.
Not being able to see how they’re doing with your own eyes when you’ve been caring for them all along is very stressful.
I, too, have reached out to Dad’s oncologist to see if there’s anything about the medication he’s giving him that would cause his current state.
The thing is, two people with cancer can be on the same drug and have completely different responses to it, even if it’s the exact same cancer.
No matter what happens with your mom, you can rest knowing that you have done everything you can for her.
Posted by LaurenMaria on Jun 11, 2020 8:03 pm
We thought it was the pain meds but the doctor just told us that they kept reducing the pain meds, and now she isn't on any at all...???
Hence why they did a brain scan, b/c they don't know why she is so confused.
But it's so weird, she doesn't feel pain...just loopy, can't walk, sleeping a lot, not eating, now has catheter.....BUT No pain meds, and no pain..?
Does anyone know what's happening?
Posted by Cynthia Mac on Jun 12, 2020 9:34 am
They’ve been unable to determine the cause for my Dad’s confusion, either, but they have advised that it could be from something as simple as dehydration or constipation.
Posted by JoannaO on Jun 14, 2020 5:19 pm
Cynthia Mac raised some good points. I work in a hospital as a recreation Therapist and I know that when we see signs of delirium we inform the nurses and doctors and they check for UTI, dehydration and constipation. I'm pretty sure they would've checked it already but you can ask.
In terms of seeing your loved ones at the hospital. Is there any way to do a videocall with during meals? Or to drop of cooked meals or snack they are familiar with. Some hospitals may only accept non perishables but will make an exception if food intake is low.
Posted by Adeline74 on Jul 4, 2020 1:57 pm
i was wondering how can we find out if molecular studies were done following the biopsy? I see lots of people posting that they are HER2+ or other types, how did you find out those details? Are those standard tests in Canadian hospitals after a biopsy? Should we request them privately? I understand that in order to find out if you are a candidate for immunotherapy you need molecular tests, genetic markers and other tests done. Where did you get those tested?
Thanks a lot,
Adeline , my husband diagnosed with advanced esophageal cancer
Posted by Essjay on Jul 5, 2020 8:00 am
For example, I had breast cancer, which was found to be basal cell like, and fast growing (grade 3), but it was lacking any hormone receptors (ER-, PR-) nor the HER2 receptor, so my tumour was triple negative. Those descriptions are particular for breast cancer, and my treatment was tailored to that phenotype. I didn’t have an oncoscore done, because protocol for all stages of triple negative is chemo. However, for others an evaluation of the tumour indicates if chemo will be effective.
For other cancers, they may look for genetic markers, to identify whether certain treatments including immunotherapy will be effective.
I don’t know what tests are done on oesophageal cancer, but these are great questions for your husbands oncologist.
Have you explored the discussions on oesophageal cancer under cancer types?
How are you both doing today?
best wishes Essjay xx
Posted by Adeline74 on Jul 5, 2020 10:06 am
we are not doing too good. He was just diagnosed, stage 4 and apparently the oncologist wants palliative care . He is still young 55, with no underlining health conditions , so he wants to be given a chance to fight it, not directly to give up ....this is why we are trying to search different treatments available and would go for a second opinion, but we need to have all the data and tests done , so he has all the options on the table. It is a hard fight, but we are willing to take it on!
I just hope they did all the testing when the biopsy was done...we will have to ask the surgeon for a copy of the report.
Thank you a lot!
Good luck in your fight!
Posted by Essjay on Jul 5, 2020 10:54 am
And I’m sorry you are having a bad day. Have you thought about seeking some counselling through the social workers at your cancer centre? They are usually very good, and there for the patient and family members. I would also expect the palliative care team to be an amazing resource too, although I can totally understand if you don’t want to talk to them yet.
I’m going to tag Brighty who cared for her fiancé through his stage 4 oesophageal cancer, and may be a useful contact for you. She is awesome, and very knowledgeable of the medical system and working through it xx
Posted by Brighty on Jul 5, 2020 2:32 pm
Adeline74 hi!!! I'm so sorry you are going through this. We have spoken be before. I would totally get a second opinion. My fiance was stage 4 as well because his esophageal cancer spread to the lymph nodes. He was only 42. With his situation he was getting treatment at two different hospitals. Mackenzie health for chemo and sunnybrook for radiation. He has his chemo oncologist and his radiation oncologist. The chemo oncologist referred him to a surgeon who said there was no hope for him and surgery was not an option. So we sought advice from the radiation oncologist at sunnybrook who had more connections and many downtown Toronto hospitals work as a team. So sunnybrook was connected with Toronto East General (now called Michael Garron) so the radiation oncologist referred him to wonderful oral surgeon at Michael Garron who was able to perform the surgery and get all the cancer out. It also depends on what body parts the cancer has spread to. Where his infected lymph nodes were was a very delicate area and there was only a 50 50 chance they could get it out.. but they did. They had to break his ribs and cut into his vocal cords.. but that wonderful surgeon got all the cancer out. Its amazing what they can do medically. I'm not sure about immunotherapy for esophageal cancer as that was not an treatment option at the time for my fiance . Sorry I can't be of more help with that. I do agree with @essjay about the counseling center. The oncology social worker was very good to me. I dropped in frequently. She always let me in.. and cry and cry and cry. She listened to me how ever long I needed it. She was also a great help accessing resources that my fiance needed for care. We found all the resources we needed through her. I can't say enough good things about the oncology social worker. Please let me know if you have any more questions. We are here to listen and support whatever you need.
Posted by Eddie on Jul 9, 2020 11:00 am
Jan. 2020 I was then put in an Immunotherapy trial, (OPDIVO). after one treatment I had to stop because of high blood pressure. My future treatments were canceled and I was admitted to the palliative care ward at the hospital. It took 6 days with medication to bring down my blood pressure and then I was well enough to go home.
The one treatment of immunotherapy that I had was still working, my cancer was disappearing more and more each week, I made an appointment with my Oncologist and he was so surprised that the Immunotherapy had worked so well that he put me back on it. I've now have had 4 treatments and I am on a short break because of a rash outbreak which is a normal side effect. I don't mind the break because I know that it is still working. I see the results each week when I have the bandage changed.
I would recommend this treatment to anyone if you are able to get it, it doesn't work for everyone but when it does it's like magic.
Good luck to everyone,
Posted by Lacey_adminCCS on Jul 9, 2020 11:54 am
Since being back on Immunotherapy your blood pressure has been okay?
Here are some other discussions about Immunotherapy you may want to join: https://cancerconnection.ca/search?query=Immunotherapy and discussions about Squamous Cell Carcinoma:https://cancerconnection.ca/search?query=Squamous+Cell.
May I ask where the cancer is located. (Only if you want to share)
Posted by Eddie on Jul 9, 2020 12:21 pm
Posted by sgt. pepper on Jul 10, 2020 9:37 am
Good Luck for a successful recovery like mine.
Posted by Eddie on Jul 10, 2020 12:43 pm
I have had 4 treatments and not that worried about skipping a couple, it worked well for me in the past. I really think that the treatments could
be spread out somewhat to help with the side effects. I'm seeing my oncologist on the 23rd. and discuss with him the possibility of a treatment every 2 months. I think the side effects would decrease with that time period. This is not like chemo, this works! and I'm in no hurry.
Posted by sgt. pepper on Jul 10, 2020 2:59 pm
My treatments were every three weeks and I felt pretty bad for the first week and a half (rashes, fatigue, headaches) and when I starting to feel better by the third week I was given another dose. I also had an allergic reaction during an infusion so I had an IV of Benadryl before and that knocked me out for the rest of the day. I was actually upset when treatment was stopped as I considered it my safety net and an essential defense in the cancer battle. I understand there is a longer term effect on the immune system for two years after treatment is discontinued. I believe my immune system was boosted and is still working to fight cancer and covid-19 virus, hopefully forever!!
Posted by Eddie on Jul 10, 2020 4:01 pm
And it did even worse than when I started chemo.
I believe the Immunotherapy infusions boost the immune system and sometimes it's an over boost. I would rather take a break from treatment than to have more side effects.
When my skin rashes calm down (difficult to do in this heatwave) I am again ready for treatment.
Posted by User1987 on Jul 23, 2020 10:09 pm
I have called the hospital everyday and they have been able to tell me that she is PD-L1 > 50% and ALK negative but the nurse cannot find the EGFR results yet. I have learned from a lecture posted on another thread that Keytruda is not as effective if my mom is also EGFR positive and that targeted therapy would be the treatment of choice in this case. Does anyone know how long the EGFR results take to get measured from the biopsy? I am eagerly waiting for my mom to start treatment and to be able to speak to the oncology team. Also does anyone know if my mom is EGFR positive and is treated through targeted therapy and the cancer then mutates to where EGFR therapy no longer works, would she then be able to switch to Keytruda?
I’m sorry for the many questions, she just wants to start treatment as soon as possible.
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