For those still following along at home I do have a little bit of an update in my "journey"!
October 2017
I had just been diagnosed with tonsillitis (for the first time in my life) the day before i was due to have my usual CT scan. I mentioned this to the GP and he said it would be fine to have the scan. The hospital called the day of my scan to confirm a few things, so I mentioned it to them and they also said its fine. I was still a little concerned that it would show something up on the CT scan so I mentioned it to another 2 people when I arrived at the hospital who both didn't seem concerned either. Fast forward to a week later when I saw my specialist for the results. There was a few lymph nodes in my neck that had increased in size since my last CT scan. This had him worried of a possible relapse in my Hodgkin's. He booked me in for a PET scan to see what was happening and to see if my cancer was back or it was due to me having tonsillitis.
November 2017
I had my PET scan in November, this showed increased activity over my last one years ago. It was then that I was booked in for a biopsy on the lymph node in my neck. At this stage it was looking suspicious that it could be back. He called a surgeon while i was in the room to see when they could get me in and if they would do it as even though the nodes had increased they were still quite small and couldn't be felt by touching the neck. The surgeons basically said they didn't want to do it as they wouldn't be able to feel where they need to cut and what they would be needing to biopsy. He then said he would organise for a fine needle biopsy to be done under ultrasound and a local anaesthetic and would let me know when that would be. The benefit of having the surgeon do it would be that they could ensure they got enough lymph node to be able to biopsy it. By doing it with a needle they can't guarantee they aren't just getting fatty tissue.
December 2017
I went in for my needle biopsy. It took them a while to figure out if they could do it or not as they also couldn't feel/see what they were supposed to biopsy. The biggest node they could find was right next to an artery so the DR didn't really want to attempt to stick a needle next to it. He went and spoke with another DR who then came and looked at the ultrasound and was quite confident that he could do it. The whole procedure wash't as bad as i thought it would be. The worst part was the local anaesthetic, other then that i couldn't feel anything. They took 3/4 samples to give them the best chance of getting what they needed.
December 15th 2017
I arrived at my appointment to be told that they didn't have any results yet which was frustrating as I had been stressing about the results all day. He called pathology to see if the samples had been looked at yet but they hadn't. He didn't think that he would have the results until the next week so we went home and he said he would call when he had results. Around 5:30pm that same day he called and said he had the results. Majority of the biopsies they took were just fatty tissue. A very small amount of it was actually lymph node, however that small amount came back negative for Hodgkins. He said the amount they could test wasn't enough to rule out that it hadn't returned. He said he spoke with the DR that had done the needle biopsy to see if they could do another one but they said they would just get the same sort of samples as it was difficult enough the first time. He gave me 2 options. Option 1 - Go in the following week for a biopsy under general anaesthetic or Option 2 - Wait until the end of January 2018 and have another CT and PET scan. I suggested waiting and he agreed this was the best option. Hodgkins Lymphoma is a slow growing cancer of waiting a few months would not be bad.
January 22nd 2018
PET scan day!
January 23rd 2018
CT scan day!
February 2nd 2018
I got my results. No scans had got any worse since the last ones, which is great! Numbers still aren't back to normal levels but have slightly decreased! The biggest lymph node in my neck at my last CT was 17x12 and this one was 15x11. The highest activity number on my last PET scan was 10 and this one was 6. There are no other nodes in my body that have increased. Going on these results and the fact that i had tonsillitis for a 2nd time just before Christmas we decided to wait and redo CT and PET scans again in 3 months.
May 2018
I had my CT & PET scan with results on Friday 4th May. There was again some slight decrease in numbers, so its looking less and less likely that i have relapsed. We are just now monitoring it. I see my specialist in August just for a clinical checkup, no scans or blood tests! Then around November I will have another lot of scans. This will be the 5 year mark of getting the "all clear" and being told I am cancer free, I am being positive that after those scans this will still be the case!
In October 2012 at age 25 I was diagnosed with stage 3 Hodgkin's Lymphoma, this is my story about the fight for my life.
Sunday, June 17, 2018
Saturday, May 27, 2017
I'm back!!!
Time for an update! Just yesterday I had one of my 6 month checkups! I had major anxiety about this one, I had 100% convinced myself this thing that once invaded my life had returned. Rewind to about 3 weeks before when I booked in for my chest X-ray, I started feeling short of breath, this continued right up until I saw my oncologist. I believe I had a tumor in my chest and that I was going to get bad result. Turns out my stress and anxiety was for nothing and everything came back clear! People tell you to "not stress" or "it will be ok" but it's not that easy, I really wish it was. Don't get me wrong, for 5 months out of the last 6 I didn't stress, but it's just that few weeks before I see my oncologist that my mind starts playing crazy tricks on me. My heart rate and blood pressure were both high due to my anxiety. I did also mention to him that I had been short of breath, he said to contact him if it continues and he will organize a lung function test as one of the chemo drugs I was on can cause problems with the lungs. Here's hoping it's just anxiety related.
So I see him again in 6 months for what will hopefully be my last CT scan for a very long time! He has also requested I get a heart scan around the same time, just to make sure another one of the chemo drugs hasn't affected that. Nothing to worry about for this one, just a precautionary scan. This CT scan will also bring me to 4 years clear! I can't believe it's been nearly 4 years since I got the all clear and 5 years since I was diagnosed. In a funny way it feels like only yesterday I went through it all but at the same time feels like forever ago. Every now and then I will go back through and read my blog, it's almost like I'm reading someone else's story. It seems very surreal that I went though all this. My mind has shut it out, which is a good thing!
I'm still waiting to get my hip replacement. I see the orthopedic surgeon every year and not much changes so we keep putting it off which I'm ok with as I don't really want to have it anyway so the longer I can put it off the better. The pain doesn't impact on my life too much, I do walk with a sight limp but that's about it.
So I see him again in 6 months for what will hopefully be my last CT scan for a very long time! He has also requested I get a heart scan around the same time, just to make sure another one of the chemo drugs hasn't affected that. Nothing to worry about for this one, just a precautionary scan. This CT scan will also bring me to 4 years clear! I can't believe it's been nearly 4 years since I got the all clear and 5 years since I was diagnosed. In a funny way it feels like only yesterday I went through it all but at the same time feels like forever ago. Every now and then I will go back through and read my blog, it's almost like I'm reading someone else's story. It seems very surreal that I went though all this. My mind has shut it out, which is a good thing!
I'm still waiting to get my hip replacement. I see the orthopedic surgeon every year and not much changes so we keep putting it off which I'm ok with as I don't really want to have it anyway so the longer I can put it off the better. The pain doesn't impact on my life too much, I do walk with a sight limp but that's about it.
Saturday, March 19, 2016
My biggest scare yet!
So i have just been through my biggest scare yet. I heard the words "You have possibly relapsed", it was words I had never wanted to hear, it was daunting, it was scary actually it was terrifying.
This is how it went:
Saturday 30th January: I was sitting watching television and my hand landed on a lump in my neck, it was just under my ear, near my jaw. My initial reaction was fear. I waited a few days to see if it would go down or disappear it didn't.
Wednesday 3rd February: I called my Drs receptionist and she contacted my Oncologist, he requested I have a CT scan of the neck that day.
Friday 5th February: The day I got the results, they weren't what I wanted to hear. 5 nodes in my neck had all increased in size since my last CT, 2 of them had not been previously seen. 1 of those 2 was the one I could feel. He began to tell me that I had possibly relapsed, told me about what would happen if I had. Treatment would involve more chemotherapy, radiation and a stem cell transplant. He immediately booked me in for more scans - a PET and a CT of the abdomen.
In between these 2 appointments I felt that the lumps in my neck had slightly decreased in size just by feel.
Friday 12th February: I had my PET scan and CT of the abdomen today. I saw my Oncologist the same day to get the results. Whilst sitting in the waiting room I had a voice mail message from the ENT clinic at the RAH saying they had a referral for me to see a specialist on the Monday. My heart sank, I figured this meant it was bad news and that my cancer had returned, especially since I had been booked in the next business day! He had taken everyone else in before me and then it was my turn. I was so nervous and felt sick. He began by telling me that he still didn't have a clear answer, I took this as a good sign. He went on to explain that the PET scan showed that the 2 new nodes were "lighting up" on the scan but the other 3 showed nothing. He said that the CT of my abdomen showed no new lumps. I told him that I believed that the lump I could feel had got smaller since I saw him last, he had a feel and agreed. Due to the fact that they didn't feel any bigger he was happy for me to make the decision as to wether I wanted to cancel the ENT appointment that he had made for me on the Monday and have another CT of the neck in 2 weeks. The ENT appointment had been booked for me to meet with a specialist to organise surgery to remove the node to test it for cancer. We all agreed to cancel it and rescan.
Saturday 27th February: I arrived at Bensons Radiology to have my CT of the neck. As always there was a problem. They didn't have my forms to do the scan, they either hadn't been faxed over or they had misplaced them. Being a Saturday I knew it would be hard for them to organise some new ones, but they gave the RAH a call to see if they could. My oncologist wasn't working but they talked to another Dr that could send over the referral. When it came through it didn't have a Drs signature on it, so they needed to call them back to get another faxed through. The 2nd one came and they didn't write on it that it needed to be bulk billed and also had on there I was getting my neck, chest and abdomen scanned which was incorrect. In the end I ended up giving them my Oncologists mobile number so they could call him directly at home. He assured them it was just my neck to be scanned and told them to bulk bill it, they were happy with this. An hour after I was supposed to have my appointment I finally had my scan. For my last 2 neck CT's I have told them that I don't want the injection of contrast, my Oncologist is happy for me to do this providing they get clear enough pictures.
I was due to get my results on Friday 11th March, but being the great Oncologist he is my Dr read the results early and texted me them on the 2nd of March to say that the CT showed all nodes to have slightly decreased in size and due to this he was happy to wait and rescan in 3 months time!
And that brings me to today! I can't feel the lump at all anymore so hopefully it was just some infection my body was fighting.
I will update when I have my next scan.
Xx
This is how it went:
Saturday 30th January: I was sitting watching television and my hand landed on a lump in my neck, it was just under my ear, near my jaw. My initial reaction was fear. I waited a few days to see if it would go down or disappear it didn't.
Wednesday 3rd February: I called my Drs receptionist and she contacted my Oncologist, he requested I have a CT scan of the neck that day.
Friday 5th February: The day I got the results, they weren't what I wanted to hear. 5 nodes in my neck had all increased in size since my last CT, 2 of them had not been previously seen. 1 of those 2 was the one I could feel. He began to tell me that I had possibly relapsed, told me about what would happen if I had. Treatment would involve more chemotherapy, radiation and a stem cell transplant. He immediately booked me in for more scans - a PET and a CT of the abdomen.
In between these 2 appointments I felt that the lumps in my neck had slightly decreased in size just by feel.
Friday 12th February: I had my PET scan and CT of the abdomen today. I saw my Oncologist the same day to get the results. Whilst sitting in the waiting room I had a voice mail message from the ENT clinic at the RAH saying they had a referral for me to see a specialist on the Monday. My heart sank, I figured this meant it was bad news and that my cancer had returned, especially since I had been booked in the next business day! He had taken everyone else in before me and then it was my turn. I was so nervous and felt sick. He began by telling me that he still didn't have a clear answer, I took this as a good sign. He went on to explain that the PET scan showed that the 2 new nodes were "lighting up" on the scan but the other 3 showed nothing. He said that the CT of my abdomen showed no new lumps. I told him that I believed that the lump I could feel had got smaller since I saw him last, he had a feel and agreed. Due to the fact that they didn't feel any bigger he was happy for me to make the decision as to wether I wanted to cancel the ENT appointment that he had made for me on the Monday and have another CT of the neck in 2 weeks. The ENT appointment had been booked for me to meet with a specialist to organise surgery to remove the node to test it for cancer. We all agreed to cancel it and rescan.
Saturday 27th February: I arrived at Bensons Radiology to have my CT of the neck. As always there was a problem. They didn't have my forms to do the scan, they either hadn't been faxed over or they had misplaced them. Being a Saturday I knew it would be hard for them to organise some new ones, but they gave the RAH a call to see if they could. My oncologist wasn't working but they talked to another Dr that could send over the referral. When it came through it didn't have a Drs signature on it, so they needed to call them back to get another faxed through. The 2nd one came and they didn't write on it that it needed to be bulk billed and also had on there I was getting my neck, chest and abdomen scanned which was incorrect. In the end I ended up giving them my Oncologists mobile number so they could call him directly at home. He assured them it was just my neck to be scanned and told them to bulk bill it, they were happy with this. An hour after I was supposed to have my appointment I finally had my scan. For my last 2 neck CT's I have told them that I don't want the injection of contrast, my Oncologist is happy for me to do this providing they get clear enough pictures.
I was due to get my results on Friday 11th March, but being the great Oncologist he is my Dr read the results early and texted me them on the 2nd of March to say that the CT showed all nodes to have slightly decreased in size and due to this he was happy to wait and rescan in 3 months time!
And that brings me to today! I can't feel the lump at all anymore so hopefully it was just some infection my body was fighting.
I will update when I have my next scan.
Xx
Monday, October 12, 2015
Quick Update
Just a quick update!
Friday 4th September I saw my oncologist to get my results back from my scan. All nodes that had previously had cancer in them came back stable, however a new node has shown up at double the size to last years scan. This node is located in my right inguinal region. I previously had no cancer in this region. My oncologist asked me to get an ultrasound on it ASAP. I managed to get in somewhere on the following Monday 7th at 11am. By 12pm he had let me know the results, he said it looked reactive to something rather then lymphomatous, he was happy to watch and wait and get it re checked in 3 months (Dec). I guess if it is still there then they will biopsy it.
All other blood work came back ok, except my vitamin d was low... again! I will see my oncologist again December 4th! Will update more after that.
xx
Friday 4th September I saw my oncologist to get my results back from my scan. All nodes that had previously had cancer in them came back stable, however a new node has shown up at double the size to last years scan. This node is located in my right inguinal region. I previously had no cancer in this region. My oncologist asked me to get an ultrasound on it ASAP. I managed to get in somewhere on the following Monday 7th at 11am. By 12pm he had let me know the results, he said it looked reactive to something rather then lymphomatous, he was happy to watch and wait and get it re checked in 3 months (Dec). I guess if it is still there then they will biopsy it.
All other blood work came back ok, except my vitamin d was low... again! I will see my oncologist again December 4th! Will update more after that.
xx
Monday, August 31, 2015
Scanxiety...
I can't believe its been a year since I had my last CT scan and nearly 2 years since I found out I was in remission.
I despise CT scans so so much! The whole scan takes only 5-10 minutes but I still hate them. I have to fast for 2 hours before my scan, which normally means no breakfast as I try and get a 9am appointment. Instead I get to drink the Barium Sulfate drink. It actually doesn't taste that bad. It looks like milk but certainly doesn't taste like it. I have to drink 1 cup every 20 minutes over an hour. Once finished I get taken in for the scan. I lie down in the CT scanner, get a cannula put in and a drip connected. They do a few test runs and get the scanner lined up. Once they are happy with the position they inject the first lot of dye. This is the part that I hate. It gives you a warm flush that you can feel throughout your whole body and it makes you feel like you have peed yourself (true fact)! Once that scan is finished they administer more dye to scan my neck. Then the scan is over! I have to hang around for another 10 minutes to make sure I don't have a reaction to the dye and then I am good to go.
This brings me to today.. I now have to wait until this Friday to get the results back from the scan. It feels like forever away. My anxiety is at an all time high.
I despise CT scans so so much! The whole scan takes only 5-10 minutes but I still hate them. I have to fast for 2 hours before my scan, which normally means no breakfast as I try and get a 9am appointment. Instead I get to drink the Barium Sulfate drink. It actually doesn't taste that bad. It looks like milk but certainly doesn't taste like it. I have to drink 1 cup every 20 minutes over an hour. Once finished I get taken in for the scan. I lie down in the CT scanner, get a cannula put in and a drip connected. They do a few test runs and get the scanner lined up. Once they are happy with the position they inject the first lot of dye. This is the part that I hate. It gives you a warm flush that you can feel throughout your whole body and it makes you feel like you have peed yourself (true fact)! Once that scan is finished they administer more dye to scan my neck. Then the scan is over! I have to hang around for another 10 minutes to make sure I don't have a reaction to the dye and then I am good to go.
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| Breakfast |
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| The delicious liquid |
Below is a quote that I love and helps me through the harder times.
I will be back to update at the end of the week. My blog is still getting hits so I presume there are still a few of you that read it.
xxx
Saturday, July 25, 2015
First 2015 update
Would you believe it's been 9 months since I last posted an update? I have come here many times to post one but haven't had a lot to write about, today I do however have something to fill you in on!
Friday 10th July I was driving home from work and felt a lump in my left elbow crease, like anyone else who has been through something similar to me, I immediately began to panic. As soon as I got home I started googling to see if I could figure out what it was, this time Google didn't help me. I stressed about it over the weekend. Tuesday I mentioned it to the Pharmacist at work and he told me to book in with my dr ASAP as with my history one can never be too cautious.
I called my GP but could not get an appointment for 2 weeks, I knew I couldn't wait that long so I called and made an appointment with my oncologist for that Friday (17th July). Friday morning came and I felt so incredibly sick with stress that I was making myself vomit. I had convinced myself that I now had a secondary cancer.
1:20pm I arrived at the hospital, I had to wait about 20 minutes to see my oncologist. He had another oncologist with him as it was a "slow day" in the Youth Cancer Clinic. I explained what I had felt and then they both had a feel. Their suspicions were either a blood clot from the PICC line I had in that arm or an inflamed lymphnode. If it was a lymphnode it would need to be removed and biopsied ASAP. He also mentioned that he had never heard of anyone getting cancer in their elbow after having Hodgkins and that it would be incredibly rare if it was.
They checked me out to see if there were any other lumps they could feel but they couldn't. My blood results also didn't show anything suspicious. It was recommended I have an ultrasound to see what was going on.
After a few calls they managed to get me in somewhere that same day.
4:00pm I went and had my ultrasound. The girl that was doing it stopped half way through and said she wanted to get the dr to have a look. I was now starting to worry!! They both came back and the dr was looking at it and said what she thought it was. I asked her if she thought it was cancer and she said no. She was pretty certain it was a ganglion cyst, which are rare on the elbow, they normally occur in the wrist. They normally just leave them if they aren't causing any problems and sometimes they can go away by themselves.
In other news, my hair is growing back nicely! I have finally got it to a style and length that I am happy with.
In other news, my hair is growing back nicely! I have finally got it to a style and length that I am happy with.
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| Quinzi's Sisters From Other Misters Relay For Life Team |
I have my next checkup CT scan at the end of August. This will take me to the 2 years in remission. We are pretty confident that this scan wont show anything bad. This will hopefully be my last CT scan for a very long time.
Until then xx
Sunday, October 26, 2014
Scans, Scans & More Scans!
So it seems I always say ill be back to update but then don't come back for weeks.. oops!! Sorry!
5th September - I am happy to sat that my CT scan came back all clear! This marks 1 year of being Cancer free! Woohoo! He was happy with everything except my vitamin d level which is still a little low, so I have uped my dose. I see him again in December with another CT scheduled for March 2015. We spoke about the fact my GP thought I had AVN, he said it is very common in patients that have been treated for blood cancer.
Avascular necrosis or AVN - is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse.
11th September - I got in pretty fast to see the Orthopaedic surgeon, which surprised me. I had to have another xray on my hip before my appointment with the surgeon. In the appointment he showed me on the X-rays that the bone is starting to chip away and also has quite a large crack in it! Explains why it's causing a lot of pain. He requested an MRI and then said we would make a decision based on those results. I was rebooked to see him on the 23rd October.
19th September - I was booked in to have a gated blood pool scan (heart scan). My oncologist requested this because the chemotherapy I had has a high risk of damaging the heart.
5th September - I am happy to sat that my CT scan came back all clear! This marks 1 year of being Cancer free! Woohoo! He was happy with everything except my vitamin d level which is still a little low, so I have uped my dose. I see him again in December with another CT scheduled for March 2015. We spoke about the fact my GP thought I had AVN, he said it is very common in patients that have been treated for blood cancer.
Avascular necrosis or AVN - is the death of bone tissue due to a lack of blood supply. Also called osteonecrosis, avascular necrosis can lead to tiny breaks in the bone and the bone's eventual collapse.
11th September - I got in pretty fast to see the Orthopaedic surgeon, which surprised me. I had to have another xray on my hip before my appointment with the surgeon. In the appointment he showed me on the X-rays that the bone is starting to chip away and also has quite a large crack in it! Explains why it's causing a lot of pain. He requested an MRI and then said we would make a decision based on those results. I was rebooked to see him on the 23rd October.
19th September - I was booked in to have a gated blood pool scan (heart scan). My oncologist requested this because the chemotherapy I had has a high risk of damaging the heart.
This is how they do it:
- The “in vivtro” method: a cannula or thin plastic tube is inserted into a vein in your arm. The medication that prepares the blood for labelling (stannous pyrophosphate) is then administered via this tubing. About 15 to 20 minutes later about 10 ml of blood is removed through this tubing. The blood is then labelled in the laboratory. About 10 minutes later the patient’s labelled blood is injected back through the same tubing.
The scan it self only takes about 10 minutes. I will get the results back of this scan with my next oncologist appointment in December. I presume its all good because if anything came up wrong I think they would have called my by now!
25th September - I had my first ever MRI, something I was terrified of! I took a pre med of lorazepam to relax me which helped. I was also lucky as it was only my hip that needed scanning I was allowed to go feet first, so the whole time if I tilted my head back slightly I could still see the roof which was good! Having headphones and being able to listen to music also definitely helps. I get the results from this on the 23rd October.
22nd October - I met with the Orthopaedic Surgeon to get the results of the MRI and make a decision as to where we go from here. He pretty much repeated what he said at my last appointment. He gave me 2 options. Option 1 - Wait and let it take its course until the pain is too much and then go in for a hip replacement or Option 2, do an experimental operation by trying to save the hip bone. This is only experimental surgery so they aren't sure if it would work or not, if it doesn't it will bring on the need to have the hip replacement sooner. So naturally I said I would wait. He mentioned that sooner rather then later the joint will develop arthritis and when it gets to this stage thats when I need to go back and see him and they will do the hip replacement. So at this stage I am booked in to see him again in 1 years time, if the pain gets too much I am too go and see him sooner. I am limited to what I can do, simple things like putting on socks & shoes hurts, sitting down hurts and walking up and down stairs hurts!
So aside from the AVN I feel good! The pill has made the hot flushes from the menopause go away! I have increased my hours at work to 30+ in the last few weeks, so my body is still getting used to early mornings and long working days.
xxx
25th September - I had my first ever MRI, something I was terrified of! I took a pre med of lorazepam to relax me which helped. I was also lucky as it was only my hip that needed scanning I was allowed to go feet first, so the whole time if I tilted my head back slightly I could still see the roof which was good! Having headphones and being able to listen to music also definitely helps. I get the results from this on the 23rd October.
22nd October - I met with the Orthopaedic Surgeon to get the results of the MRI and make a decision as to where we go from here. He pretty much repeated what he said at my last appointment. He gave me 2 options. Option 1 - Wait and let it take its course until the pain is too much and then go in for a hip replacement or Option 2, do an experimental operation by trying to save the hip bone. This is only experimental surgery so they aren't sure if it would work or not, if it doesn't it will bring on the need to have the hip replacement sooner. So naturally I said I would wait. He mentioned that sooner rather then later the joint will develop arthritis and when it gets to this stage thats when I need to go back and see him and they will do the hip replacement. So at this stage I am booked in to see him again in 1 years time, if the pain gets too much I am too go and see him sooner. I am limited to what I can do, simple things like putting on socks & shoes hurts, sitting down hurts and walking up and down stairs hurts!
So aside from the AVN I feel good! The pill has made the hot flushes from the menopause go away! I have increased my hours at work to 30+ in the last few weeks, so my body is still getting used to early mornings and long working days.
xxx
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