Trial a no-go

[LexieCat]

Got a call this morning from my oncologist. She says with my current shortness of breath, the trial sponsor is concerned the trial might aggravate it--if it is caused by inflammation. Apparently they can't say for sure whether it's caused by that or the cancer.

So she is putting me on a short course of steroids to see if that helps my breathing. Then she laid out two options--the docetaxel and Cyramza combo, or Opdivo plus Yervoy. I have a telehealth visit scheduled for Tuesday with Dr. Iyengar at UTSW to see if we could do the PULSAR therapy in combo with the Opdivo/Yervoy.

I wasn't feeling all that optimistic about this trial, so I can't say I'm crushed, but I wanna get started with some kind of treatment soon.

[Rower Michelle]

Hoping the next trial is a better match- I agree with you- the Texas trial seems more promising…

[LexieCat]

9 hours ago, Rower Michelle said:

Hoping the next trial is a better match- I agree with you- the Texas trial seems more promising…

Actually, PULSAR isn't a trial. The good thing about that, from my perspective, is that there won't be a ton of testing in advance (at least not at the level of a trial), and there's more flexibility--it offers more opportunity for tweaking doses, etc. There IS a trial there for PULSAR and durvalumab, but PULSAR, with or without immunotherapy, is generally available, as I understand it.

 

[Babs]

Lexie,

Sorry to hear about the trial but seems like maybe it wasn’t a good fit for you anyway.

Can you explain this PULSAR treatment?  I apologize if I missed it before.  If it’s not a trial it’s something new in radiation therapy?  Is it available only at certain locations?  Sounds interesting.

Thanks,

Babs

[LexieCat]

5 hours ago, Babs said:

Can you explain this PULSAR treatment?  I apologize if I missed it before.  If it’s not a trial it’s something new in radiation therapy?  Is it available only at certain locations?  Sounds interesting.

It's VERY interesting. Tom Galli posted about it here a few weeks ago: https://forums.lungevity.org/topic/48886-the-next-big-thing-in-lung-cancer-radiation/

I had a consult at the time with Dr. Iyengar, who is a colleague of Dr. Timmerman (the presenter) and we agreed at that time to see how i made out with this trial first--the reasoning being I could do the PULSAR any time.

I believe this kind of radiation treatment COULD be done almost anywhere they have SBRT--no special equipment needed--but the expertise seems to be at UTSW right now. It's in Dallas. I'm going to ask Dr. Iyengar next week if I could start on the immunotherapy first--I'm thinking of relocating soon to Colorado to be closer to family and it would be half the travel time from Denver to Dallas that it would be from here.

 

[BridgetO]

I'm sorry to hear your trial isn't happening. I does seem like you've got quite a few other options, though. I know you'll hang in there! Keep us posted.

[LouT]

Lexie,

There will be another way for you.  Hang in there, you've got a lot of people pulling and praying for you.

Lou

[Minh]

Good morning Lexie,

I am sitting here in MD Anderson and thinking about what I can do to help people in this forum. I realized there are many people here have a lot more experiences than me and been giving you many useful advices. So the only thing I can contribute is my little  experience and info. that I recently gained through my diagnosis and treatment plannings which I have gone through in the past 12 weeks. I hope my info. would help patients lessen their anxiety as far as how to obtain the optimal diagnoses and treatments at reasonable and acceptable speed and cost at best cancer center. At the beginning I was really panicking when I was told of my cancer. I didn’t know of what to do and was mentally temporarily paralyzed for couple of weeks. Without being incoherent in my thoughts any further, I would like to share my experiences at MD Anderson.

1. I got in for 2nd opinion very quickly. I submitted info. In the morning, they called me by noon the same day. And able to schedule initial appointment the following week, but I couldn’t go right away because of my heart surgery. My total cost for this trip was about $1000 for 5 days (it’s tight for my budget, but bearable in short term). Here is contact link.

https://www.mdanderson.org/about-md-anderson/contact-us.html

2. Once I scheduled initial appointment, I got access to social workers which provided me lists of all kind of lodging discount info. for both hotels and apartment rentals. There are couple of apartments are free to patients up to 3 months. I can email pdf files if you needed.

3. When you are here for initial appointment, MD Anderson most likely to complete all medical workups during your initial appointment week. I was amazed how fast they moved through the diagnosis process that includes biopsies. They will not tell you specifically what your first week schedule will be. But after the first day of appointment, they will schedule your whole week for required medical workups. They would expedite your schedule thereafter.

4. After the diagnosis, they will make recommendations. But it’s still up to you to pick your choice. They recommended me to have radiation. But I elected to have lobectomy. This could be confusing time because they only make recommendations according to your current performance status and existing medical comorbidity. I found out that if I had radiation first, it would be difficult for lobectomy later on because of scarring and it would also be  difficult for CT scan to diagnose cancer recurrent. That was the reason why I elected to have lobectomy. If you have any IF-THEN questions, you may need to press them for answers as they are not keen to answer hypothetical questions.

5. Once you picked your choice of treatment, things moved fast. Once I made my choice of lobectomy, they scheduled me in for the following week ( about 7 to 10 days later). They do have a lot treatment options. But if there isn’t treatment that meets your cancer, they do have many clinical trials that may interest you as in link below.

https://www.mdanderson.org/patients-family/search-results.html?q=Lung cancer&searchType=clinical trials

6. Many patients worry about caregiver requirement during surgeries or biopsies which required patients to have caregivers present during the procedure, I found out that they have health sister services that provide this service which may cost $400 per day. I was going to use it for my lobectomy for one day if my spouse wasn’t available due to work. I figure most of the time I would not need caregiver if I only have chemo or radiation treatment. The only time I would need health sister is for surgery and it’s only for one or two days which I could manage to squeeze in my budget if necessary.

7. Social workers could provide free air plane ticket once per year if you let them know 3 or 4 weeks prior to your appointment and if their fundings are available. So far I haven’t asked for it, since I figure there are more people needed it than me. Social workers are very helpful in providing financial reliefs and also other related helps as well whenever they can.

I am not sure if you have gotten second opinion from MD Anderson. But if you are thinking about second opinion at another top rated cancer center, I hope you keep MD Anderson on top of your list. I remembered reading something about you moving back to Colorado and then go to Dallas for some clinical trial. Houston is not to far away, right?

Sorry about all the misspellings!!!

[LexieCat]

Thanks, Minh.

I've recently been treated at an MD Cancer Center at a local hospital, have my primary oncology care at U Penn, which is a top cancer center, as well as the consult I'm having with the radiation oncologist at UTSW. If I go down there for the radiation treatment, I have resources for lodging. And I don't want to ask for free flights when I can afford to pay for them.

So for right now I think I have as much expertise as I can handle. 

But all that info is great advice for others--thanks for taking the time to put it together so nicely.  

[BridgetO]

Minh, I agree with LexieCat that the review of MD Anderson's procedures will be helpful for people contemplating a second opinion.

[Tom Galli]

Minh,

Your description of your treatment experience at MD Anderson is superb. To allow it to be a future resource for our Forum community, might you consider re-formatting it as a generalized description titled, say: Thoracic Surgery at MD Anderson. Then you might post it in our Lung Cancer 101 section of the forum. Your description will then be easily available for future Forum members.

Stay the course.

Tom

[Minh]

Tom,

I will do that after I get home and get well from my recent lobectomy. I want to contribute my knowledge that I have gained through my cancer journey and hope that will help new patients to seek the best possible treatment at rated cancer center such as MD Anderson without the fear of crippling their family financial. There are a few of us are blessed to live near top rated cancer centers and get the best cancer treatment, but many of us are not that lucky. At the beginning I did not think I could afford to get 2nd opinion and treatment at MD Anderson due to costs. But I took a gamble and signed up for 2nd opinion at MD Anderson and found out they offer a lot of assistance. Their social workers are so helpful.

My point is patients should explore the opportunity to get best possible treatment at top rated cancers centers regardless of their financial status and conditions because there may be a lot of assistance becomes available once patients have entered their systems.