Ending one treatment and beginning another

It’s been quite a journey since I received my first pathology report of malignant melanoma back in December of 2007. I’ve had multiple surgeries including a sentinel lymph node mapping and biopsy and lymph node dissections, 19 treatments of intensive interferon, isolated limb perfusion at U Penn, 9 months of leukine shots, and finally high dose interleukine 2 (IL2) with temozolomide (TMZ). I made it through two courses of the IL2 and TMZ and was scheduled to be readmitted to the hospital for the third course to begin tonight. However, for the second scan in a row my disease is stable, and this treatment is too harsh to only get stable results. Stable is great because it means the cancer’s progression has been stopped, and Monday’s scan even showed that a tumor in my lung got a bit smaller and has less intensity (from black to gray on the printout). But it’s still not good enough to go through a third course. I feel as though I’m a bit too happy about not having to go through the third course, but it really was rough and I was quite stressed about having to go back into the hospital. It’s quite freeing to be sitting at the kitchen table with the screen door open right now!

The next step, which has been plan B for awhile, is to begin radiation on my leg and go through four infusions of ipilimumab (Yervoy). The infusions will be three weeks apart and will last about 90 minutes – all out-patient. That begins September 29th. I’ll know more about the radiation treatment and schedule after the consultation (still to be scheduled). Although the Yervoy has side effects, they’re all manageable and nothing like the IL2. It’s expected that I’ll be able to work through it all and feel good. I’ll get scanned about six weeks after the last infusion, so that would be sometime in January.

The oncologist explained the IL2 and TMZ as pressing the gas pedal down with the brake on. The Yervoy will release the brake. He has been administering Yervoy for about 3 1/2 years, and has seen Yervoy able to be more effective after a patient has gone through IL2. So I’m going into this treatment with an advantage. Add the radiation into that, and we expect to knock the cancer out! My volume of cancer remains small, so this is doable!!

We now have a new plan B and C, so if any cancer cells are left after this treatment, there are still more options. It’s nice to have options! My surgical oncologist told me that all I need to do is live long enough and the right drug will come along. Another new drug just received FDA approval last week (pembrolizumab – Keytruda), and the research continues for even more effective therapies.

Except for the IL2 treatments, I had a great summer and feel terrific. We feel immense gratitude for all the love and support we continue to receive – it makes ALL the difference! Thank you!!

Next Steps in Course #1

I have been feeling stronger each week, and expect this week to be my best since my hospitalization back in March. . . just in time to start the next chemo drug! I’m scheduled for labs this Friday. May 11th will be my 28th day after being discharged from the hospital, so at bedtime on Sunday I’ll begin taking temozolomide (temodar, TMZ) for 21 days with the last dose on May 31st. I’ll also take ondansetron 30-60 minutes prior to taking the TMZ and again in the morning to offset the nausea, a common side effect. Other common side effects include loss of appetite, constipation, tiredness, weakness, and headache.Temporary hair loss is also possible. If the nausea can be controlled, I think I’ll be able to handle the rest. After May 31st I’ll get 2 weeks off and then get my next PET/CT scan on June 16th. Fingers and toes crossed for improved results! The date tentatively set for the port placement, oncology visit, and hospital readmit for IL2 is Thursday, June 19th. That would be the start of course #2, and doing this all over again.

If you have some good strategies for surviving a hospital stay, I’m listening. The problem is that while I’m there I have no interest in reading, watching TV, or listening to music. I’m just watching the clock, waiting for the next treatment and trying to survive. I’m probably making it worse than it has to be.

 

Needless to say I’m trying to plan some fun activities prior to June 19th. If I thought being in the hospital in March was tough, I don’t know how I’m going to survive being there in June :-(. We’re talking about some possible day trips between now and then. I’m hoping to make it to the beach, and a neighbor and I aleady have a Phillies day planned. Of course, the pool will be open soon and I’ll want to enjoy that before I have the port again. I’ll enjoy getting my flowers planted, and reading some good books. It will all be good! 

These past weeks have been incredible with such an outpouring of friendship and support. I’ve received inspiring notes and cards, beautiful flowers, an overflowing planter, a special harvest, an angel all the way from Slovakia, and a collaboratively knitted shawl full of blessings, love and positive thoughts. I even had a song dedicated to me – so very touching! It all helps me to remain strong and have faith that I can beat melanoma. 

May is Melanoma Awareness Month, so check your skin, check a loved one’s skin, stay out of tanning booths and use sunscreen. 

Thanks all!

Back Home

Well, I’m back home earlier than expected. I made it through only three treatments this time and was stopped due to strange happenings on the heart monitor during the third treatment. These treatments were different in that nausea was a constant factor and I had to ask Bill for the basin on several occasions. I didn’t get the shakes on the first treatment, but that’s when the nausea was the worst. The second treatment’s shakes lasted the longest and required a second bag of Demerol, and the third treatment is when my heart rate went high and the monitor showed the right side of my heart doing most of the work. The two EKGs they did were normal, or at least near normal, and the blood work showed no heart attack. The more hours away from the third treatment, the better my heart monitor displayed. It was back to normal by the time I left the hospital. A cardiology fellow was consulted and met with us, reviewed the tests, asked questions, and ordered an echo cardiogram.

So, now I need to have blood work done each week for three weeks, and I’m getting an echo cardiogram done on Wednesday. Depending on how this all plays out will determine whether I can ever have another IL2 treatment. We both have mixed feelings about that – if it’s effective, we want to continue, but it’s so darn rough that we’re kind of glad to be able to step away from it. I even asked if there’s a low dose IL2 treatment and was told that’s not an option. 

My port has been removed, and it’s a relief to have that gone. I’ll be able to shower normally in another 24 hours. If I go through IL2 again, I’ll simply get another one put in.

Now I’m questioning whether my tiredness/exhaustion has been from the IL2 or from potential heart problems. I’m waiting on some answers for that since I’ve received some conflicting information. At least I’m under good care, and am being monitored closely. We’ll proceed with the plan of waiting 28 days until I begin the second drug and take that for 21 days. Then I’ll be scanned again to see if it was effective at all or not. 

I’ll be trying to get back into work-mode this week, and will probably turn off my away message tomorrow after I get a little more rest. It’s amazing the impact even a short hospital stay has on a person.

Thanks again for all of the well-wishes and prayers! They are continually appreciated so much!!

1st Round of IL2 Done!

Well, I didn’t make it all the way to 14 treatments – 9 was the best I could do. Nothing could have prepared me for the actual experience. The nurses refer to this treatment as “shake ‘n bake” and it’s a good term. Approximately an hour and 15-20 minutes after receiving the infusion of IL2, I started shaking as though I had the worst chills ever. My entire body shook for 15-30 minutes. As soon as I felt the chills begin, I called the nurse who started the demerol IV (with compazine). During this time, my temperature climbed to 103-104. Afterwards, I was spent! I slept it off and then began trying to gear up for the next treatment – usually within 3-4 hours.

Out of the 9 treatments, I was spared the shaking on the 6th treatment (they simply never came) and the 9th treatment was the worst, lasting 30 minutes. Bill actually requested a second bag of demerol to get me through that one. The nurses suggested that I skip the next treatment, which I did. However, after skipping a treatment, it was just too difficult for me to sign on for a 10th. I worried that if the 10th treatment was as bad as the 9th, well, I don’t know that I could have battled through it. That’s when I said “I’m done.” I feel badly that I didn’t make it through all 14 treatments when I know my body could have gone on for at least one more. However, my regular oncology doctor was happy with getting 9 in (anything over 7) and said that 7, 8, and 9 treatments are the average. The other doctor tried to pressure me into a 10th treatment, but my decision had been made at that point.

This greatly impacted my appetite in the hospital, and I barely ate anything at all. The IL2 treatment makes you retain fluid and I retained about 20 lbs (got my rings off just in time!). I’m still losing that fluid (5 lbs yesterday), which makes for interrupted sleep during the night. I’m on Pepcid AC, an antibiotic, and a potassium phosphate replacement, with anti-nausea as needed. I learned how to flush my lines daily (easy!), and am still dealing with a raging rash (expected). I’m taking Benadryl to help with the itching.

I’m working online as I’m able to do so. At least it’s allowing me to stay caught up on emails, and to help out with some online course preparations. It’s not as many hours as I had hoped, but at least it’s saving some sick time for next week. I really can’t take Benadryl AND work.

I’ve received beautiful flowers, a prayer quilt, home-made Italian wedding soup, numerous cards and well-wishes, many offers for help of any kind, and my neighborhood is decorated with ribbons, so many thanks to ALL! I’ve got to do this all again next week, going in on April 10th, so please keep your prayers, positive thoughts and good mojo coming my way. It really does make a difference!

Finally, my children have posted the following on Facebook:

Many of you know Mother is in the thick of kicking cancer’s butt. (Read more here: https://isolatedlimbperfusion.wordpress.com/). Many of you have kindly asked how you can help. In addition to thoughts and prayers, one way is to join our family in giving a gift to the Cancer Institute Fund and the Melanoma Center at Hershey Medical Center in her honor.

1. Go to https://securelb.imodules.com/s/1218/hershey/index.aspx?sid=1218&gid=1&pgid=928

2. In Gift Information, select “A specific area or multiple areas” (a popover window appears).

3. Select one or both, Cancer Institute and/or Melanoma (Skin Cancer) Center.

4. Carry on with the rest of the form.

5. Thanks for thinking of Mother and for your generosity.

6. Prayers and thoughts.

Thank you!