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Let's Talk Immunotherapy

What has been your experience with Immunotherapy?
What do you wish you had known before you started?
32 Replies
sgt. pepper
176 Posts
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!!!

Cynthia Mac
3229 Posts
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!
7 Posts
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!
Cynthia Mac
3229 Posts
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.
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**

Cynthia Mac
3229 Posts
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.
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?
Cynthia Mac
3229 Posts
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.
6 Posts
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.
25 Posts
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
1536 Posts
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

25 Posts
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!
1536 Posts
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
7042 Posts
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.   
7 Posts
Immunotherapy is the treatment of the future and in many cases, today's treatment. Last summer I had chemotherapy for squamous cell carcinoma.  It worked for a certain period of time but the Oncologist told me it would come back.  It surely did, worse than before. 

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,      
Thanks for sharing Eddie‍.

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)

7 Posts
The primary cancer is on my neck just below my ear, some small spots on my lungs, and it was discovered on my spine but the primary was my neck. I had an operation to have a tumour removed over 40 years ago on that neck location and had a gland removed.  I see it all the time so I am aware of the progress of the treatment.
sgt. pepper
176 Posts
You are right to call immunotherapy magic!!  I had nine treatments with Keytruda for melanoma and the tumor was gone after two months.  Unfortunately,  treatment was discontinued after I developed meningitis.  Other side effects included rashes and major fatigue.  However, it was worth it since I have now been cancer free for three years and of all the treatments i underwent (surgery, radiation) this one seemed to finally overcome the cancer after three recurrences.

Good Luck for a successful recovery like mine.  

Sgt. Pepper
7 Posts
Thanks, sgt. pepper‍ 
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.
sgt. pepper
176 Posts

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!!

Sgt. Pepper
7 Posts
In my opinion, 3 weeks is too soon, that was the chemo protocol. I managed very well with the chemo but was told cancer would come back in  a short time,
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. 
11 Posts
My mom has her first round of treatment with Keytruda on August 11th. She experienced minimal side effects, but in terms of her pain levels, she has really good and really bad days. Today, she was in a significant amount of pain. Wondering if anyone else has experienced that with Keytruda or having good and bad days related to pain?
1535 Posts
Hi User1987‍ , sorry to hear that your mom is having significant pain. Some people who might join in this discussion about Keytruda are sgt. pepper‍  , Cynthia Mac‍  and debd‍  . 
31 Posts
Sorry about your moms pain . 
Keytruda reacts in everyone differently . Please let your moms oncologist know .
Keytruda is known to effect joints .
Speaking from my own experience, my oncologist had to stop treatment a few times because of swelling joints .
I was put on prednisone a few times then tapered off , then back to Keytruda.
I hope this helps . 
Cynthia Mac
3229 Posts
Hi, User1987‍ , I, too, am sorry to hear about your Mom’s pain.

When my Dad was on Keytruda, he never complained our “outright” pain. But, since his passing, I have learned that he wasn’t the most forthcoming with me. It seems that he didn’t want me to worry.

I agree with Melanoma‍ , that you or she should contact the oncologist. They are your best resource for letting you know if this is a side effect of her Keytruda, or whether it could be something she needs to see her GP about.

Thanks, Elsie13‍ For the tag.

sgt. pepper
176 Posts
Hi everyone.
User1987‍ 1987 I am very familiar with Keytruda and nasty side effects.  My main issues were rashes, fatigue, headaches and two frozen shoulders from joint pain.  I also developed meningitis following which treatment was discontinued.  I had six months of treatment and the good news is I had a total response to treatment as my tumor (melanoma) was gone after two months and I've been cancer free ever since.  It was well worth it and I consider the treatment a miracle drug.  I was in a clinical trial with another drug which I suspect caused the meningitis, not the Keytruda. My advice for anyone undergoing this treatment, you just need to persist despite any discomfort for a possible successful outcome.  It is also important to follow up with the oncologist with regular appointments, blood work, scans etc.

Sgt. Pepper

2 Posts
Hi guys,

Thank you for sharing your experiences. I've never had the first-hand experience with immunotherapy, but I found this article about cancer immunotherapy and vaccine recently and I really hope that they will develop the better version of it.

Btw, my mothers' doctor suggested her immunotherapy rather than chemotherapy. I believe that she will agree with him.

Best wishes,
Wendy Tea
1637 Posts
MarieSN‍  Welcome. Great first post! I am sorry your mom needs treatment.  Have you also found Cancer Types under Forums?  And the discussions for Caregivers? 
2 Posts

Hi Wendy Tea, thank you so much. I haven't had time to check out other discussions yet, but I will, one of these days.

353 Posts
Wendy Tea / re Marie SN and immunotherapy treatment article from U of Japan research 21014 . I wonder how this has progressed since now 2020. And sounded so promising I am going to mention this to my Oncologist I just had notice is on board with me as Radiologist . I really would prefer to target cancer cells by the sounds of Immunotherapy then destroy living healthy cells radiation does .
In your experience , after reading this article or known Cancer Centre treatments available elsewhere . Has this Immunotherapy only reserved for stage 4 cancers , that highly conventional treatments cannot be used curative  . Or if a patient for other health reasons is deemed necessary for Immunotherapy from indications of MUGHA heart diagnostics results of ill health ❓
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