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Immune Therapy question ???

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Howdy All

Happy St. Patty’s Day

I having been reading about immune Therapy for over a year. I’ve been hanging on and waiting for the drug for my diseases to come to market. To keep this short. I knew the one for Breast Cancer also was being used for like 8% of us that had the right gene. I have read where several of you are taking this treatment. Are you living in the US? Could you share the drug name? And, any details. Like your success, side effects and anything else you can share. I’m all ears. Lol

God Bless

Dennis

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I live in Alberta, Canada. The chemo I'm on is called Panitumumab which is supposed to also be called Vectibix. I say that because when I've googled it it says it's Vectibix but my onc said it isn't. Vectibix could be the American name for it. I've noticed that most drugs have a slightly different name between Canada and the States. I should have asked her to clarify but I didn't. 

It has been very effective but I also developed sepsis while in it and had to stop treatment. Now that I'm back on it I am taking antibiotics as well just in case. It dropped my CEA from over 100 to 53 with just 4 treatments. And the tumours shrunk. My protocal is 6 treatments, one every two weeks.

Jan

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Jan, 

Wow. Thank you so much for the info. We here in the US think we are so superior. It’s a huge lie. It takes our Food and Drug Administration forever to approve anything. In fact, when I was put on capecitabine the pharma tha handles it called and asked for a $450 copay before they would ship a Month supply. I ended up buying it through www.PlanetDrug out of Winnepeg. I paid $210 for 120 Pills, compared to 56 tabs here. Short story. I’m the third generation first born male diagnosed with this diseas. I went 12 years without insurance. Because after my Dad was going thru his treatment I went and had my colonoscop. They found 2 Polyps that they removed during the procedur. They were biopsied and found to be clean. Four months later I received a notice from my insurance provider that was being dropped. I was in the pre existing pool. I couldn’t afford to pay cash. I was 45. 12 years later, when our govt. passed what they refer to as Obamacare, I was allowed to buy coverage. At 57 I immediately went and was tested. Yep! I found out I had a tumor and was already stage IV. The coverage I was able to purchase, carried a $4500 deductibl with an annual out of pocket of $12,000. Needless to say I have paid the $12k for the 4th year. Now our wonderful president has defunded Obamacare and this will be the last year my state will offer it. My Dad was a known college basketball coach. He also was diagnosed as a Stage II. He spent the next 16 years doing speaking engagements promoting early detection. We loss him in 2011. But, it wasn’t the cancer that got him it was the treatment.

I’m being honest when I say, this group of folks has reinergized me. Any other info will be extremely appreciated.

God Bless You

A Happy Dennis 

 

 

 

kyolcu
Posts: 112
Joined: Jun 2017

Jan Jan,

I think I am having same chemo as you do. I live in Texas. Cetuximub (Erbutux) is the US name of the chemo. Causes rash on face and torso. I use Aloe Vera gel for rash it helps and you always need to moisturized your body.

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Kyolcu

Hello,

I just had a consultation with my Doctor this past Tuesday. I specifically ask him, again, when he thought this type of drug was going to be availabl. All I was told was there were many things coming soon. Is the rash the only side effect your dealing with? I’m 2 years past my Oxyiplatin cocktail and still deal with a case of neuropathy. I’m a sponge. Any other info you care to share would be so helpful and appreciated.

Dennis

PS - I still don’t understand the CEA numbers. Mine was 4.2 up from 4.0.

kyolcu
Posts: 112
Joined: Jun 2017

yes, rash is the only side effect I had For about 3 months now. Before that I used for 2 years of folfiri treatment of Avastin, Irinotecan and 5FU for about 1 and half year. I have insurance through my wife’s work we have high deductible like you. Hopefully, I will be eligible for Medicare in Agust. Did you apply disability and Medicare?

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Yes I’m now on disability. But, can’t survive on $900 a month. I have found part time work where I get a weekly cash donation to my cause. Not eligible for Medicare yet.

kyolcu
Posts: 112
Joined: Jun 2017

I know there is 2 year waiting period to be eligible for Medicare. I work one day a week. I hope everything will be easier once I got Medicare.

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

don't forget that Medicare doesn't cover everything. From the medicare site: "You generally pay a set amount for your health care (deductible) before Medicare pays its share. Then, Medicare pays its share, and you pay your share (coinsurance / <p>An amount you may be required to pay as your share of the cost for a medical service or supply, like a doctor's visit, hospital outpatient visit, or prescription drug. A copayment is usually a set amount, rather than a percentage. For example, you might pay $10 or $20 for a doctor's visit or prescription drug.</p>
" name="1297" href="https://www.medicare.gov/sign-up-change-plans/decide-how-to-get-medicare/original-medicare/how-original-medicare-works.html#1297">copayment) for covered services and supplies. There's no yearly limit for what you pay out-of-pocket."

 I have a supplemental policy,  so my out-of pocket expenses are capped at $6700  annually. Some supplemental pland   have  alower  limit.  It's a drop in the bucket to treatment costs would be without coverage, but it's still a big chunk of change  when you're on a  low fixed income. One great thing about my coverage is that unlike some private health insurance I've had in the past, they have never denied  a requested test or treatment that my doctors have asked for, and that is worth a lot to me.

Grace/lizard44

Annabelle41415's picture
Annabelle41415
Posts: 6554
Joined: Feb 2009

If you are on disability, you should have automatically been signed up for Medicare.  Are you on disability through SS or work?  I'm sorry that you are struggling so bad.

Kim

BGNor's picture
BGNor
Posts: 29
Joined: Feb 2018

Hi

 

I have been reading about these therapies for some time now.

Two of the currently available immuno therapies (in some countries) for mCRC use are Keytruda(Merck) and Opdivo(BMS). The limitaton is that the cancer need to exhibit micro satellite instability or dMMR. Only about 5-10 % of CRC have these genetic defects. Your doc should be able to test for these conditions. I will will do tests soon.

Another very interesting immuno therapy is atezolizumab. It is already approved for other cancer types and is in testing for mCRC. Early test indicates it could work on all mCRC. Clinical trials ongoing in US. Possibly ready for launch in 2020. 

 Clinical trial ID: NCT02788279. Not recruiting.

Positive early results reported here: http://ascopubs.org/doi/abs/10.1200/JCO.2016.34.15_suppl.3502

Best wishes, BG

 

 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

Sorry I haven't responded, I've been feeling crappy for a few days. The rash is the main thing but if there's a rare side effect for anything I seem to get it. It did bother my colon and gave me sepsis so I missed the lwst two treatments. Now that I'm back on it I'm taking antibiotics every day to prevent that. But because the colon is so irritated I'm getting a lot of seepage rectally which gets me up at night and makes me scared to leave the house and I use maxi pads for it. My surgeon says it's normal.

Oh, I also was very sun sensitive so we're trying to do my twice yearly rounds to spring and fall so it doesn't ruin my summer.

I tried Capecitabine before this and it didn't shrink the tumours and I got one more while on it. Chemos work differently for everybody. My understanding is that the Panitumumab is very expensive. Mine is covered by Canadian health care but they said it's $3000 a shot if I had to pay it.

Another odd side effect is facial hair growth. It didn't happen until I'd been off of it for a couple of weeks but I got almost a unibrow and a little moustache as well as a little goatee. Very fine but I knew it was there and got rid of it. Then my eyelashes grew long and curly. A few months later my eyelashes all fell out. They're back now, though, took about a month.

Jan 

lizard44's picture
lizard44
Posts: 409
Joined: Apr 2015

At one point, after I began  Erbitux, my eyelashes got so long that they curled back, brushed my eyeball, and irritated my eyes so that I had to keep them trimmed. They never fell out, and  they have been back to normal to  a long time now. I never got the facial heair  growth but  my hair  is curly in places now and has a mind of its own so I  look as though every day is a bad hair day. Not a major problem though- and there are always hats Laughing

Grace/lizard44

Dmac1957's picture
Dmac1957
Posts: 17
Joined: Mar 2018

Thanks for all the feedback. I read where it is expected to roll out in the Us in 2020. I have heard there is a bill being drawn up in our Congress. Called Free to Try. It will allow those with a terminal illness to get new drugs that has not yet been approved by the FDA. We will see if it passes. Maybe a trip to Canada is in my future.

 

Dennis

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