Tuesday, March 18, 2014
The Waiting Game Continues
It has been too long. Way too long.
I've been on antibiotics for, what, 5 months now? Has it been that long? Yes, I think it has. I had a repeat CT scan in January which showed my Actinomycosis was about half-cleared. Half-cleared or half-remaining? I've always been a "glass half-full" kind of gal. The good news is that it is getting better.
My Pulmonologist gave the impression that the lymphoma was officially gone when he got the bronch results back in October, but he & the Oncologist have decided that a repeat PET scan will really be the only way to make sure that one pesky lymph node was just reactive due to infection and not lymphoma.
And so we continue to wait...
My medical team has been awesome. My Pulm is working closely with my Medical Onco and an Infectious Diseases doc. I do have one less member of my medical team now. I was released from my radiation onco at my last appointment with her (which, IIRC, was in December).
I have an appointment with my medical onco on Thursday (just for routine bloodwork and to check in). I see my pulm again in April after a repeat CT to check the infection status. Hopefully it's gone! Then we can do a repeat PET and, fingers crossed, finally put an end to this whole NHL nonsense.
Thursday, October 24, 2013
Best Update Yet!
FINALLY, OFFICIALLY CANCER FREE!
WHOOP!
I had my bronchoscopy done several weeks ago. Last Thursday, the pulmonologist called to tell me that there was no evidence of lymphoma in my lung!
My pain/shortness of breath is caused by an infection in & around my lung. Actinomyces bacteria normally lives in your mouth & gastrointestinal tract. But since my immune system was down from chemo & radiation and the right lung was damaged from the lymphoma & radiation therapy (mostly scarring), my lung became infected. The symptoms I am/was having (shortness of breath, cough, phlegm, night sweats, low fever) were really causing a lot of worry since all were symptoms I had when I was first diagnosed with ALCL, but they also happen to be the SAME symptoms caused by Pulmonary Actinomycosis.
Now our concentration is on kicking this infection out! I am on a long cycle of amoxicillin. I take 2000 mg per day (500 mg 4x daily) and will be taking it for 6-12 months.
And in other FANTASTIC news:
My youngest sister just gave birth to her first baby boy! He was born at a healthy 7lbs 5oz, and Mommy & baby are both doing great! They were released from the hospital today! Congrats to Amanda & David, and welcome to the world, baby Waylen! I can hardly wait to hold you!
Monday, September 23, 2013
And The Saga Continues...
WOW! It's been a while!
The kids & I had an absolute FANTASTIC time in Louisiana. We were there almost a month. We saw old friends, made new friends, ate lots of not-so-good-for-you-but-delicious food, and just had a really great time.
While in LA, I was keeping a close eye on a lump in my neck. When we got home, I made an appointment with my oncologist, who sent me for a CT scan. It showed that the lump was probably just scar tissue from my biopsy and that it looked like I had a touch of pneumonia in my right lung. No big deal since I was feeling well.
Then I developed a cough. I ran a fever for several days. I thought I had just caught a bug that I couldn't shake. That, along with a little back pain, was enough for me to call the doc again. About 3.5 weeks ago, my oncologist sent me for another x-ray. He said my x-rays looked the same. After discussing the results with the radiologist, they determined that I had Radiation Pneumonitis. Since I was right at the 6 month mark after radiation, they thought that was the obvious answer. Since I was fast-approaching the date of my 12 week post-op PET scan, he decided to treat me with 2 weeks of antibiotics, so that any infection would be gone & not mess up my scan. I finished my antibiotic the day of the scan.
Last Wednesday was the PET scan. Friday was my follow-up. The doc said the stupid lymph node is STILL lighting up on the scan. The good news is that it hasn't grown. We don't know why it's lighting up though. And now the spot of what we thought was pneumonia or pneumonitis has gotten more dense. What is that? We don't know. Infection (viral, fungal, bacterial)? Cancer? We just don't know.
My oncologist spoke with and made me an appointment with a Pulmonologist. He is going over my films this week & I meet with him on Thursday. We'll decide the next step then. The oncologist thinks the pulmonologist will want to do a bronchoscopy to try to get a sample of whatever this is. We're going to leave the lymph node alone right now because a biopsy on it means a wire-guided open biopsy (which, IMO, sounds like no fun at all).
Back to the waiting game.
The kids & I had an absolute FANTASTIC time in Louisiana. We were there almost a month. We saw old friends, made new friends, ate lots of not-so-good-for-you-but-delicious food, and just had a really great time.
While in LA, I was keeping a close eye on a lump in my neck. When we got home, I made an appointment with my oncologist, who sent me for a CT scan. It showed that the lump was probably just scar tissue from my biopsy and that it looked like I had a touch of pneumonia in my right lung. No big deal since I was feeling well.
Then I developed a cough. I ran a fever for several days. I thought I had just caught a bug that I couldn't shake. That, along with a little back pain, was enough for me to call the doc again. About 3.5 weeks ago, my oncologist sent me for another x-ray. He said my x-rays looked the same. After discussing the results with the radiologist, they determined that I had Radiation Pneumonitis. Since I was right at the 6 month mark after radiation, they thought that was the obvious answer. Since I was fast-approaching the date of my 12 week post-op PET scan, he decided to treat me with 2 weeks of antibiotics, so that any infection would be gone & not mess up my scan. I finished my antibiotic the day of the scan.
Last Wednesday was the PET scan. Friday was my follow-up. The doc said the stupid lymph node is STILL lighting up on the scan. The good news is that it hasn't grown. We don't know why it's lighting up though. And now the spot of what we thought was pneumonia or pneumonitis has gotten more dense. What is that? We don't know. Infection (viral, fungal, bacterial)? Cancer? We just don't know.
My oncologist spoke with and made me an appointment with a Pulmonologist. He is going over my films this week & I meet with him on Thursday. We'll decide the next step then. The oncologist thinks the pulmonologist will want to do a bronchoscopy to try to get a sample of whatever this is. We're going to leave the lymph node alone right now because a biopsy on it means a wire-guided open biopsy (which, IMO, sounds like no fun at all).
Back to the waiting game.
Monday, July 1, 2013
And Now We Wait
A lot has happened since my last post. It's been quite a whirlwind. And now that I am completely unmedicated for the first time in over a week, I thought I'd post about everything.
On June 12, I had an unsuccessful needle biopsy on the suspicious node in my neck. Despite 2 doctors, at least 10 trips in and our of the CT machine, an ultrasound, 2 giant needles in my neck, and 1.5 hours of pocking & prodding, they were unable to get a tissue sample. The node is hard & rubbery, and the doc was unable to get the needle inside it. He stopped because he said it was getting too dangerous to continue around all of the arteries/veins/nerves.
I met with my ENT the following day & she scheduled me for a CT scan, which happened on 6/14. On 6/21, I went under the knife for an excisional biopsy. She also diagnosed me with tonsil stones. GROSS! So, in addition to the biopsy on my neck, she also took my tonsils out!
That biopsy also did not go as planned. There were two big nerves the doc was concerned with (one for my shoulder & one for my diaphragm), so she was being extra careful. She told Nathan she got a good amount of tissue from around the site of the needle biopsy, but wasn't sure if she got from the suspicious node.
And...she didn't. The node she got was 0.33 cm (normal size), reactive (showing inflammation), but benign. HOORAY for that! But the node she was going for is still in there. And we still don't know any more than we did from the initial PET scan.
I met with my oncologist Friday. He was much more optimistic, as the node doesn't seem to have grown any. The type of lymphoma I had (have...had...whatever) is considered aggressive and fast growing. It's a great thing that the node is still only about 1 cm (as seen at my 8 week PET scan and again on my CT scan on 6/13).
We have decided to take the wait & watch approach since we've tried so much lately. A PET scan would be unreliable now because of the surgery. It would probably light up like a Christmas tree because of all of the inflammation in there now. My neck needs a break!
So...we wait. I go to the ENT on the 9th for another post-op check-up on my neck & tonsils. Then I go for blood work & to see the onco at the beginning of August. I will also schedule a PET scan for 12 weeks out from the last surgery.
In the meantime, the kids and I are very excited about our upcoming trip! We will be leaving for Louisiana on 7/10! We're staying for a few weeks & hope to do lots of relaxing and lots of visiting!
On June 12, I had an unsuccessful needle biopsy on the suspicious node in my neck. Despite 2 doctors, at least 10 trips in and our of the CT machine, an ultrasound, 2 giant needles in my neck, and 1.5 hours of pocking & prodding, they were unable to get a tissue sample. The node is hard & rubbery, and the doc was unable to get the needle inside it. He stopped because he said it was getting too dangerous to continue around all of the arteries/veins/nerves.
I met with my ENT the following day & she scheduled me for a CT scan, which happened on 6/14. On 6/21, I went under the knife for an excisional biopsy. She also diagnosed me with tonsil stones. GROSS! So, in addition to the biopsy on my neck, she also took my tonsils out!
That biopsy also did not go as planned. There were two big nerves the doc was concerned with (one for my shoulder & one for my diaphragm), so she was being extra careful. She told Nathan she got a good amount of tissue from around the site of the needle biopsy, but wasn't sure if she got from the suspicious node.
And...she didn't. The node she got was 0.33 cm (normal size), reactive (showing inflammation), but benign. HOORAY for that! But the node she was going for is still in there. And we still don't know any more than we did from the initial PET scan.
I met with my oncologist Friday. He was much more optimistic, as the node doesn't seem to have grown any. The type of lymphoma I had (have...had...whatever) is considered aggressive and fast growing. It's a great thing that the node is still only about 1 cm (as seen at my 8 week PET scan and again on my CT scan on 6/13).
We have decided to take the wait & watch approach since we've tried so much lately. A PET scan would be unreliable now because of the surgery. It would probably light up like a Christmas tree because of all of the inflammation in there now. My neck needs a break!
So...we wait. I go to the ENT on the 9th for another post-op check-up on my neck & tonsils. Then I go for blood work & to see the onco at the beginning of August. I will also schedule a PET scan for 12 weeks out from the last surgery.
In the meantime, the kids and I are very excited about our upcoming trip! We will be leaving for Louisiana on 7/10! We're staying for a few weeks & hope to do lots of relaxing and lots of visiting!
Friday, June 7, 2013
8 Week Post Treatment Check-up
Wednesday I had my 8 week post-radiation PET scan and bloodwork. Today was my check-up with the medical oncologist.
I got news I wasn't anticipating. A spot show up on my PET scan. It was not there at my last scan (after chemo, but before radiation), but it is there now. It's about 1 cm and is located in the same spot as the original mass. My doctor did not seem confident that this spot was not cancerous. He said that if it hadn't shown up so brightly on the scan, he would have blown it off as inflammation/infection, but he is very concerned about it.
So, right now the game plan is a needle biopsy next week (scheduled for Wednesday, June 12). There are only two Interventional Radiologists in Richmond that my oncologist likes for the job, so I took the first available appointment with one of them.
If the biopsy comes back positive, we move to a new, stronger chemotherapy. If it comes back negative, we move to an excisional biopsy, because in the doctor's words, "I won't trust a needle biopsy if it comes back negative." They will attempt to remove as much of the lymph node as possible to biopsy it. Given the location of the node, removal is still iffy though.
We didn't talk about many details right now. We talked briefly about chemotherapy requiring hospitalization and a bone marrow transplant, but we decided to hold off on all that until after next week's biopsy.
I got news I wasn't anticipating. A spot show up on my PET scan. It was not there at my last scan (after chemo, but before radiation), but it is there now. It's about 1 cm and is located in the same spot as the original mass. My doctor did not seem confident that this spot was not cancerous. He said that if it hadn't shown up so brightly on the scan, he would have blown it off as inflammation/infection, but he is very concerned about it.
So, right now the game plan is a needle biopsy next week (scheduled for Wednesday, June 12). There are only two Interventional Radiologists in Richmond that my oncologist likes for the job, so I took the first available appointment with one of them.
If the biopsy comes back positive, we move to a new, stronger chemotherapy. If it comes back negative, we move to an excisional biopsy, because in the doctor's words, "I won't trust a needle biopsy if it comes back negative." They will attempt to remove as much of the lymph node as possible to biopsy it. Given the location of the node, removal is still iffy though.
We didn't talk about many details right now. We talked briefly about chemotherapy requiring hospitalization and a bone marrow transplant, but we decided to hold off on all that until after next week's biopsy.
Wednesday, May 8, 2013
Not Being Sick ROCKS!
I feel good! I feel great!
Not driving back & forth to the hopsital is fabulous! I am so glad chemo & radiation are OVER!
My hair is coming back full force now. I am almost to "cute Pixie cut" status. It's still a bit short, but it can actually get messed up again! Yes...BED HEAD!
And in other news:
I have started exercising again. 3-4 days at the gym doing the elliptical, weights, or walking. My awesome friend likes to take long walks with me. She knows how to push me! We take 4.5 mile walks together. It's so great to have someone to talk to. It makes the time go by so quickly!
I start Weight Watchers almost 2 weeks ago. The first week (well, not a full week, but they kept my weigh day the same from last time), I gained a few ounces. But today was weigh day again (after my first full week) and I lost 2.4 lbs! WOOHOO! If I keep up the 2lb loss per week, that means I will be 20 lbs lighter by our trip to LA in July. I just hope I can keep it up. I have been drinking a ton of water & really working on not boredom snacking. And I am starting a new hobby...CYCLING! Yeah...well, not serious cycling. I just bought myself an awesomely cute beach cruiser. I can hardly wait to get it! It should be in at the bike shop tomorrow!
Not driving back & forth to the hopsital is fabulous! I am so glad chemo & radiation are OVER!
My hair is coming back full force now. I am almost to "cute Pixie cut" status. It's still a bit short, but it can actually get messed up again! Yes...BED HEAD!
And in other news:
I have started exercising again. 3-4 days at the gym doing the elliptical, weights, or walking. My awesome friend likes to take long walks with me. She knows how to push me! We take 4.5 mile walks together. It's so great to have someone to talk to. It makes the time go by so quickly!
I start Weight Watchers almost 2 weeks ago. The first week (well, not a full week, but they kept my weigh day the same from last time), I gained a few ounces. But today was weigh day again (after my first full week) and I lost 2.4 lbs! WOOHOO! If I keep up the 2lb loss per week, that means I will be 20 lbs lighter by our trip to LA in July. I just hope I can keep it up. I have been drinking a ton of water & really working on not boredom snacking. And I am starting a new hobby...CYCLING! Yeah...well, not serious cycling. I just bought myself an awesomely cute beach cruiser. I can hardly wait to get it! It should be in at the bike shop tomorrow!
Monday, April 22, 2013
The Latest Update
Done! Finished! Completed!
22 radiation treatments are done! April 8 ended up being the END of my radiation treatments. My onco extended treatment by two days. I found out about that on day 19, which was suppose be be my next-to-last treatment. I cried like a big baby. And I mean ugly cry.
A few days after treatment ended, the blisters showed up. First on my back. Then on my neck. And it was NOT pretty. But here I am two weeks out, almost completely healed. I have some peeling & one spot still cracking on my neck, but it's MUCH better. My throat is also on the mend. I still have some swallowing pain, but it is nothing compared to the worst I had.
Saturday, we had an amazing time with great friends & family to celebrate. We had real love Louisiana crawfish shipped in & showed our VA friends how it's done! Such a fun time!
Upcoming appointments:
May 21 - 6 week follow-up with radiation oncologist
May 22 - PET scan
may 24 - follow-up with medical oncologist
22 radiation treatments are done! April 8 ended up being the END of my radiation treatments. My onco extended treatment by two days. I found out about that on day 19, which was suppose be be my next-to-last treatment. I cried like a big baby. And I mean ugly cry.
A few days after treatment ended, the blisters showed up. First on my back. Then on my neck. And it was NOT pretty. But here I am two weeks out, almost completely healed. I have some peeling & one spot still cracking on my neck, but it's MUCH better. My throat is also on the mend. I still have some swallowing pain, but it is nothing compared to the worst I had.
Saturday, we had an amazing time with great friends & family to celebrate. We had real love Louisiana crawfish shipped in & showed our VA friends how it's done! Such a fun time!
Upcoming appointments:
May 21 - 6 week follow-up with radiation oncologist
May 22 - PET scan
may 24 - follow-up with medical oncologist
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