Lung Cancer Treatment:
Treatment 1: Six Infusions of Carboplatin Alimta (chemotherapy). This was my first type of cancer treatment. I thought this was going to be like the chemo you see on TV...it wasn't. I dealt with nausea, fatigue, etc...had to get shots of Neulasta to increase my white blood cell count, but I didn't lose my hair, it just thinned. Many people talk about that being a major thing...I didn't experience this here. Once I had done my 6 treatments of carboplatin, it was decided that in order to avoid reaching the toxicity of carboplatin it should be time to switch to a different treatment. I could use Alimta again if I needed to eventually (which I did), but it was time for something new...time for a new treatment...
Treatment 2: 6.5 Months on Gilotrif/Afatinib (targeted therapy). This treatment has been by far the best for my quality of life. I took one pill once a day...the side effects were a skin rash that looked like acne and mild diarrhea that could turn crazy. But if I took Imodium--it was manageable. When this treatment stopped working--I was extremely upset because my QOL changed. Scans eventually showed lung progression...time for a new treatment....
Treatment 3: 4 months on Kadcyla and Nerlynx (targeted therapy). This treatment for lack of a better term SUCKED. It was an infusion ever 3 weeks, plus Nerlynx pills every day. The diarrhea with this treatment was RIDICULOUS!!! I was in the office 2/7 days due to dehydration from pooping soo much....and when people said "just drink more water"...I wanted to punch them in the face. Anything I ate or drank went right through me. IT. WAS. AWFUL. So when this one stopped working...I wasn't too upset...I was just sick of crapping all the time. Kadcyla wasn't the problem...it was more the Nerlynx. This treatment was super shitty. Cough started to get worse, scans showed growth...enter next treatment.
Treatment 4: 3 Months of Carboplatin Alimta (chemotherapy) and Keytruda (Immunotherapy). I was back on Chemotherapy, but this time it was a lower dose because it was mixed with Keytruda, an immunotherapy. I still had side effects from chemotherapy, got neulasta shots, etc. I eventually reached my toxicity level with Carboplatin and it almost killed me...sent me to the hospital with a BP of 80/40, Heart rate in the 180s, temperature around 102....yea that one was rough. Once that reaction occurred, it was just Alimta and Keytruda for a bit. Scans showed growth that were confirmed with a lung biopsy...enter next treatment.
Treatment 5: 1 Month of Opdivo (Immunotherapy). This treatment didn't last very long. It did have minimal side effects....but not long after 2 infusions I noticed my cough getting much worse along with my breathing...scan showed growth...time to change...again
Treatment 6: Current Treatment: Taxotere and Cyramza (Chemotherapy and Targeted therapy) I've only had one infusion of this mixture. Apparently this one is supposed to cause hairloss. The first week after this infusion was rough. I felt nausea, fatigue, I broke out in a rash (But that was probably from steroids). It wasn't easy, but my blood levels look OK so my body is handling it. This treatment was chosen for the time being while I wait to hear from MD Anderson regarding a clinical trial that I am eligible and have given my consent on...
The clinical trial is called Adaptimmune. The goal is to use the patient's T-cells (already harvested), mutate them to fight my cancer..kind of working like a transplant in a way...We are waiting to hear what happens with this...but the goal is CURABLE....It's a hope...it's a chance...it's a scary chance...but it's one that we are hoping to take.
FYI for anyone that uses Neulasta--the bone pain is ROUGH. Take the Claritin, heat worked better for me than ice, and don't be afraid to relax. It goes away...eventually.
Last thing--getting my port was one of the BEST decisions I have made in my life. It is so convenient. To be fair...I haven't had any issues ::knock on wood:: and it just looks like a third nipple on my chest...only noticeable if you actually are looking for it.
PHOTO EVIDENCE
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| T-cells |
For those of you that don't know what Gamma knife is...it's targeted brain radiation. They basically take high doses of radiation, target the lesion that is in the brain....zap it...and let it try to be the treatment. It has less side effects than whole brain radiation, which is another option eventually. The only...challenging part...is the nifty headwater they screw into your head. I don't feel any pain from the radiation, the pin sites just take time to heal.
How the Day of Gamma Knife Goes: You have to arrive to the Gamma Knife facility SUPER early...like 5:30AM early. Once there, they start an IV, go over paperwork and make sure everything is ready to go. They give you medication to help you relax, then take you to have the headpiece placed on your head. (yes they actually screw it into your head in four places) They do use lidocaine to numb the spots, but you still feel loads of pressure and they will always say "we almost have it", but once it's on...you're good.
After the headpiece is placed, the nurses will take you for a Brain MRI, the a Brain CT for the doctors and staff to make a plan as to how to treat the lesion(s) and to make sure everything gets treated. Then you FINALLY get to eat breakfast...while they come up with a plan on how to radiate your brain ;)
Once the plan is set, and they can get started, they wheel you into a room and set you up on the gamma knife table...they will manipulate your placement so they are able to better target what they are aiming for...the machine is VERY similar to an MRI (very enclosed). After everything is treated, they take the head piece off by unscrewing it, they tell you how to take care of the pin sites and then they send you home!
PHOTO EVIDENCE
Gamma Knife 1: 1/18/17 to treat 1 lesion
Gamma Knife 2: 10/13/17 to treat 8 lesions
Gamma Knife 3: 12/1/17 to treat 1 lesion
Gamma Knife 4: 11/2/18 to treat 2 lesions
A total of 12 different brain lesions that have been found and treated. So far Gamma knife appears to be working to keep the lesions at bay. The scary part is just when more appear. Eventually I will have to more than likely do whole brain radiation...but for now--I'll take Gamma Knife any day of the week.
Why I Go Where I Go:
I get asked all the time why I go to a private practice linked with Royal Oak Beaumont Hospital rather than Karmanos or U of M or Cleveland Clinic, etc.....The truth is...I've seen other opinions. I've visited MD Anderson in Texas and a doctor at the University of Michigan to seek second opinions. They communicate...I'm very happy with my choice in doctor and my medical team....I trust her more than anyone will ever understand. She has the one of the most challenging and stressful jobs...but she does it well! She researches, follows up with me, communicates with me and the other doctors...she knows what she is doing. From the doctors, the PAs, the nurses, the lab workers...everyone there has been great towards me. I'm very thankful. 💖
The best advice I can give someone going through treatment is to find someone that YOU feel comfortable with, a doctor that supports you, and an office where you feel you are being treated fairly. Sometimes we don't get to pick and are forced to attend facilities based on our insurance or the type of treatment we need to receive... but if you get the choice--go where you are comfortable!
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