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Let's Talk Immunotherapy

Let's Talk Immunotherapy

Posted by Lacey_adminCCS on May 26, 2020 5:38 pm



What has been your experience with Immunotherapy?
What do you wish you had known before you started?

Re: Let's Talk Immunotherapy

Posted by sgt. pepper on May 27, 2020 10:18 am

I had a total response and good success with immunotherapy.  I was part of a clinical trial for treatment of melanoma in 2017 with Keytruda and another drug for six months.  The side effects were major, with rashes, fatigue and eventually I developed meningitis, following which treatment was discontinued.  The tumor being treated was gone after two months and I have been "cancer free" ever since.  I was given a detailed list of possible side effects prior to treatment so I was properly prepared., except for the meningitis which was found to be caused by the second drug, not necessarily the Keytruda.  I am pleased that the immunotherapy was effective in beating the cancer (third recurrence at that time) and it seems to have been better than previous treatments, including surgery and radiation.  Hopefully, the effects will be permanent this time and the cancer will be gone forever!!!

 

Re: Let's Talk Immunotherapy

Posted by Cynthia Mac on May 28, 2020 8:35 am

sgt. pepper‍ Thank you so much for sharing your information. My Dad has been on Keytruda (pembroluzimab) for almost a year now, and, while he hasn’t had any of the symptoms you described (other than fatigue), you may have given me a clue into some issues he’s been having lately. 

I already have a call in to his oncologist, so thank you, thank you!
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Talk Immunotherapy

Posted by Jackson on May 28, 2020 11:40 am

I've just completed my fourth treatment with Pembrolizumab. I have had no reactions to the drug so far and the CT Scan following the third showed that the cancer areas had either stopped growing or shrunk  by 20%. I'm very excited by this. It looks like my marker (or markers) is just the right one for Pembro!

Re: Let's Talk Immunotherapy

Posted by Cynthia Mac on May 30, 2020 8:10 am

Jackson‍ , I’m glad you’re seeing success with the pembroluzimab. Dad’s in a clinical study, and his largest tumour went from over 3cm to less than 2.5cm in 9 months. While everyone’s cancer journey is different, sharing our experiences here helps.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Talk Immunotherapy

Posted by LaurenMaria on May 31, 2020 11:11 pm

Hi, my mom has urothelial cancer. We were told that she had 8 months, 7 months ago. Before this appointment, I had been googling cancer stuff and had seen this "immunotherapy" treatment. I asked about that and the oncologist said that the first line of defense was chemo, and then MAYBE immunotherapy. The oncologist also said that mom may not qualify b/c of her poor kidney functions and/or her cancer is different from the cells that immunotherapy targets. Or something like that b/c I wasn't really listening...obviously. 

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**

ce72a2cc3fc0d4e56378504b16a1c6b3-huge-ke
 

Re: Let's Talk Immunotherapy

Posted by Cynthia Mac on Jun 1, 2020 9:30 am

LaurenMaria‍ , good to hear from you. I’m sorry, though, to hear that your rollercoaster continues.

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.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Talk Immunotherapy

Posted by LaurenMaria on Jun 11, 2020 8:03 pm

My brother got a phone call from the hospital. Mom had a brain scan b/c she is complaining fuzzy thoughts and acting loopy.
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?

Re: Let's Talk Immunotherapy

Posted by Cynthia Mac on Jun 12, 2020 9:34 am

Hi, LaurenMaria‍, oh, that’s so strange. My dad hasn’t been complaining of any pain, either, and they’ve repeatedly checked him for UTI (urinary tract infection), and those tests have been negative. I’ve little doubt that if they’ve found urothelial carcinoma in her, they’ll have ruled out a UTI, but you can still pose the question. I can’t help but wonder if if the effects of the bladder cancer could be similar to the effects of a UTI, and it’s certainly a question that bears asking.

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.
“When the root is deep, there is no reason to fear the wind.” - Japanese saying

Re: Let's Talk Immunotherapy

Posted by JoannaO on Jun 14, 2020 5:19 pm

Hi LaurenMaria‍,

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.

Re: Let's Talk Immunotherapy

Posted by Adeline74 on Jul 4, 2020 1:57 pm

Hi there,

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

Re: Let's Talk Immunotherapy

Posted by Essjay on Jul 5, 2020 8:00 am

Hi Adeline74‍ when a tumour is biopsied, all kinds of tests are done to determine the type of cells and the makeup of the cancer. This helps to target treatment. It’s redone after the tumour is removed during surgery.
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

 
Triple Negative Breast Cancer survivor since July 2018

Re: Let's Talk Immunotherapy

Posted by Adeline74 on Jul 5, 2020 10:06 am

Thank you Essjay!

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!
Adeline

Re: Let's Talk Immunotherapy

Posted by Essjay on Jul 5, 2020 10:54 am

Adeline74‍ definitely a good plan to see the pathology report, and there’s no harm asking for a second opinion, especially given your husbands age and the fact that he wants to fight.

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
Triple Negative Breast Cancer survivor since July 2018

Re: Let's Talk Immunotherapy

Posted by Brighty on Jul 5, 2020 2:32 pm

Thank you so much for the tag Essjay‍ !
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.   
Help is out there. All you have to do is reach out.