Hello All,
boy am I tired. I went to a haematology appointment today which was just routine and everything is fine. On the way there in the car, I felt like I was going to drop off to sleep. It was REALLY hard to stay awake. Then on the way home I had the same problem and had to stop off at the shops to wake a bit and I am STILL very sleepy. I had a bad night's sleep last night. I think I fell asleep at 4am. I had IVIG infusion one week ago and I have had massive headaches every day and every night. Last night's late night as really affected me.
We had prayer meeting last night and my sister and her husband came and we had chocolate fondu with fruit. I ate too much and think that may be another reason why I was awake. Hmmm........
It appears that I will not need to have anything else cut out of my head where the cancer was taken out. After another doctor looked at the slides, it has shown that there was more taken out after the initial cut and no cancer is in those cells. The right amount as been taken. We are still waiting for Brisbane to confirm this. High reoccurance is an issue with this cancer rather than spreading. Spreading can be a problem enough to have regular screening throughout the body but we are doing well. So I have my MRI for head and neck on the 10th September. I have infusion one week early on the 12th so that I can get to Fanconi Anaemia Australia camp the week after without an infusion reaction and all. I am looking forward to camp. It starts on the 19th and goes to the 22nd!
Isaac has had frequent, painful legs at night. Both of them and sometimes he is crying so loudly and is quite distressed. We all suspect growing pains but the doctor wants to do an x-ray of both legs to rule out any nasties.
Also, Isaac has HUGE tonsils I am told...and yes, I can see that they are huge. They may be causing him to have sleep apnoea and may need to come out. We have to record his breathing while he is sleeping.
My sister is going on 13 weeks pregnant! I am allowed to tell now. Isaac was worried that his current cousin, Eliana, was gone because they are having another baby but we reassured him to say she was still around and he is much relieved. He would really like a sister himself. He is so sweet. Congratulations to my sister! I am going to be another Aunty!
Well, nothing else to report. I am going to close my eyes.
Love Charisse
Friday, August 29, 2008
Monday, August 18, 2008
Biopsy Results
Hi All,
the biopsy results were good. I had the biopsy taken from the gynae area and it came back as no dysplasia and no malignancies. So for those who are not sure that means No Pre-cancer and NO cancer. Yay! What a relief. It did show fungal and chronic inflammation. My gynae thinks it is chronic thrush. Fungas lives in the gut and someone who is not immunosuppressed can fight it off and it won't be active but someone who is immunosuppressed has difficulty. I have probably had this a long time as I have had flare ups in the past. Since I have low neuts my body will have trouble fighting it out of my gut. To eradicate it I would need to have oral antifungals for a course of 6 months but the drug is only broken down by the liver and I have compromised liver enzymes. For someone without a compromised liver, they test the liver every month while on this course but they often have to stop the treatment due to the liver becoming toxic. It would not be a good idea to risk my liver with this medication which means we treat the flare ups with cream and oral drops to keep it at bay. My understanding is that unless I am going to have a transplant, I can live with the fungal, unless it becomes a serious infection. For other reasons, it is also not ideal for me to have this risky drug. I am happy to continue on this other treatment for now because it does help me.
Still no extra news on the head cancer thingy. We are waiting for the second opinion of the slide in Brisbane. Did I mention that it looks like it will be good information now? I can't remember if I said that. I saw my head and neck cancer specialist and the appointment was encouraging. My stitches are now out and the wound has healed well.
I feel very tired and off today. I think I may have a sinus infection. I don't ever get these infections so I am not sure what it is supposed to feel like. Ah yes, Alan is talking to my doctor on the phone. Looks like they may start me on antibiotics.
Work has been great. I have been working almost every Wednesday.
This Friday is my IVIG infusion.
No other exciting stuff to report!
Love ya all,
Charisse
the biopsy results were good. I had the biopsy taken from the gynae area and it came back as no dysplasia and no malignancies. So for those who are not sure that means No Pre-cancer and NO cancer. Yay! What a relief. It did show fungal and chronic inflammation. My gynae thinks it is chronic thrush. Fungas lives in the gut and someone who is not immunosuppressed can fight it off and it won't be active but someone who is immunosuppressed has difficulty. I have probably had this a long time as I have had flare ups in the past. Since I have low neuts my body will have trouble fighting it out of my gut. To eradicate it I would need to have oral antifungals for a course of 6 months but the drug is only broken down by the liver and I have compromised liver enzymes. For someone without a compromised liver, they test the liver every month while on this course but they often have to stop the treatment due to the liver becoming toxic. It would not be a good idea to risk my liver with this medication which means we treat the flare ups with cream and oral drops to keep it at bay. My understanding is that unless I am going to have a transplant, I can live with the fungal, unless it becomes a serious infection. For other reasons, it is also not ideal for me to have this risky drug. I am happy to continue on this other treatment for now because it does help me.
Still no extra news on the head cancer thingy. We are waiting for the second opinion of the slide in Brisbane. Did I mention that it looks like it will be good information now? I can't remember if I said that. I saw my head and neck cancer specialist and the appointment was encouraging. My stitches are now out and the wound has healed well.
I feel very tired and off today. I think I may have a sinus infection. I don't ever get these infections so I am not sure what it is supposed to feel like. Ah yes, Alan is talking to my doctor on the phone. Looks like they may start me on antibiotics.
Work has been great. I have been working almost every Wednesday.
This Friday is my IVIG infusion.
No other exciting stuff to report!
Love ya all,
Charisse
Friday, August 8, 2008
Biopsy
Hi Guys,
well I had my little outburst the other night over the confusion with the tumor that they removed. I have since found out that the amount that the surgeon removed was smaller than what was recommended and that makes me a bit cross because I may need to go in and have the rest out. For this cancer it sounds like 4 mm clear margin around the tumor is recommended and the surgeon only allowed for 1.5 mm clear margin around mine. Yep, they were clear margins but it is recommended to help it not spread for it to be 4 mm. We are busy getting advice as to whether I do need to have more taken. The Queensland specialists should know. I hear that they are the best with cancers of the skin because the incidence of cancers similar to this are high in Queensland...high in Australia. I still have not physically spoken with them yet. On Monday I had an appointment with my head and neck oncologist who will arrange for the tumor slides to be sent to Queensland, Brisbane, for someone high up to take a look as a second opinion. We should find out more then and be able to clarify some things. Also my head and neck specialist will be holding a meeting with the other oncologists in the cancer center to discuss my case and be able to give me the best advice on what his thing is and how it should all be dealt with and follow up. So the ball is now rolling. I feel a bit better knowing there is a plan taking place.
Today I had my gynae appointment. I didn't have to convince my doctor about the biopsy. She thought under the circumstances of my head cancer and FA, that even though the sore spot doesn't appear to look like a nasty cancer, we didn't want another surprise....so she biopsied it today. I was heaps surprised. Usually you have to demand! Hehe. The local anaesthetic hurt SO much! OH my.....it hurt like someone was sticking a hot needle all the way through to my back. I was so thankful that my mother in law was with me. We giggled together. You see, a daughter is usually very close to their own mother. I am very close to my mum. However, having FA has also caused me to be very close to my mother in law too. She is like another mum! My mum hangs out with me on most Tuesdays and Alan's mum hangs out with me on most Fridays. We have managed to bond very closely due to these regular days and I am so used to having Denise (mother in law) with me at procedures and appointments. We are close. However, not many people are close to their mother-in-law like this....their mother yes, but not in law. So we have a unique relationship and it doesn't feel weird at all. It is just funny. She was holding my hand while I had the local and biopsy. I was covered. No one would think it was weird if my mum was there but we do have a unique mother and daughter in law relationship. It is good though. I like both sides of the family to be close.
So I have 2 stitches from the biopsy and go back in a week for the stitches to come out and for the pathology results. Good news is that even though my platelets are lower, when she did the biopsy she noted that I didn't bleed excessively and it didn't ooze. I had not had any support platelets. The haematologist said that if I oozed they would give me one if needed but otherwise my platelets are fine. That was good.
My dad is home. Please continue to pray for him. They are not sure if dad has TB and or pneumonia. He got home today and went to the doctor. They have supplied him with masks to wear in case it is TB and are testing him. We should find out by Monday. He has been really unwell. So he is isolated at home with the masks that he has to wear when around people. Poor dad. We can't even see him. They will do a test in 6 days for Malaria again as well.
Well, Alan and I are going to watch a movie.
Bless you all,
Charisse
well I had my little outburst the other night over the confusion with the tumor that they removed. I have since found out that the amount that the surgeon removed was smaller than what was recommended and that makes me a bit cross because I may need to go in and have the rest out. For this cancer it sounds like 4 mm clear margin around the tumor is recommended and the surgeon only allowed for 1.5 mm clear margin around mine. Yep, they were clear margins but it is recommended to help it not spread for it to be 4 mm. We are busy getting advice as to whether I do need to have more taken. The Queensland specialists should know. I hear that they are the best with cancers of the skin because the incidence of cancers similar to this are high in Queensland...high in Australia. I still have not physically spoken with them yet. On Monday I had an appointment with my head and neck oncologist who will arrange for the tumor slides to be sent to Queensland, Brisbane, for someone high up to take a look as a second opinion. We should find out more then and be able to clarify some things. Also my head and neck specialist will be holding a meeting with the other oncologists in the cancer center to discuss my case and be able to give me the best advice on what his thing is and how it should all be dealt with and follow up. So the ball is now rolling. I feel a bit better knowing there is a plan taking place.
Today I had my gynae appointment. I didn't have to convince my doctor about the biopsy. She thought under the circumstances of my head cancer and FA, that even though the sore spot doesn't appear to look like a nasty cancer, we didn't want another surprise....so she biopsied it today. I was heaps surprised. Usually you have to demand! Hehe. The local anaesthetic hurt SO much! OH my.....it hurt like someone was sticking a hot needle all the way through to my back. I was so thankful that my mother in law was with me. We giggled together. You see, a daughter is usually very close to their own mother. I am very close to my mum. However, having FA has also caused me to be very close to my mother in law too. She is like another mum! My mum hangs out with me on most Tuesdays and Alan's mum hangs out with me on most Fridays. We have managed to bond very closely due to these regular days and I am so used to having Denise (mother in law) with me at procedures and appointments. We are close. However, not many people are close to their mother-in-law like this....their mother yes, but not in law. So we have a unique relationship and it doesn't feel weird at all. It is just funny. She was holding my hand while I had the local and biopsy. I was covered. No one would think it was weird if my mum was there but we do have a unique mother and daughter in law relationship. It is good though. I like both sides of the family to be close.
So I have 2 stitches from the biopsy and go back in a week for the stitches to come out and for the pathology results. Good news is that even though my platelets are lower, when she did the biopsy she noted that I didn't bleed excessively and it didn't ooze. I had not had any support platelets. The haematologist said that if I oozed they would give me one if needed but otherwise my platelets are fine. That was good.
My dad is home. Please continue to pray for him. They are not sure if dad has TB and or pneumonia. He got home today and went to the doctor. They have supplied him with masks to wear in case it is TB and are testing him. We should find out by Monday. He has been really unwell. So he is isolated at home with the masks that he has to wear when around people. Poor dad. We can't even see him. They will do a test in 6 days for Malaria again as well.
Well, Alan and I are going to watch a movie.
Bless you all,
Charisse
Tuesday, August 5, 2008
Adenocarcinoma
Hello All,
I hope everyone is doing well. I am aware that FA camp in the states starts this Friday. I am disappointed that we were not able to make it again this year. However, our turn will come again.
My mum came home from Africa on Friday. It is really nice to have her home. On Sunday, after church, we had a family lunch at my sister's house. I am really amused by Tim, Liesl's husband....hehe. He seems to constantly have energy and endurance with the kids. Eliana is his daughter and you can see her in the photo. The other child is mine....Isaac. Uncle Tim is good at roughing Isaac up and in this photo he had been roughing Isaac up a while and Eliana also wanted to join in. It was really funny and noisy and crazy. I am amused. Moving right along.
My dad is still in Tanzania. Please pray for him. He has been really unwell and they think he has Malaria. He will be home this Friday.
Below is a picture of the wound on my hand where another lesion was taken. I am showing the photo just out of interest....hehe. Doesn't it look interesting. Alan reckons it looks like a spider. In real life, it does! It is healing well and looks a bit better than this now. It has dissolvable stitches in it. It has been really sensitive. I was concerned it was not ready to have the stitches out yet and then the surgeon told me they were dissolvable so that is a relief.
So I had my follow up with my surgeon today. He tugged and pulled at the wound on my head which he told me is healing well. It hurt while he was tugging. Even though it is healing well, he was not ready to take out the stitches today. It has almost been 2 weeks and for a person who doesn't have any health issues, he would have taken the stitches out but he is being extra careful with me. He knows FA can cause delayed healing and because of the pressure on the skin with the scalp, he doesn't want it to pop open just by chance. He doesn't think it would because it looks good but he wanted to leave the stitches in for one more week to give it time to heal real well. Also, I would probably bleed easily if it popped open so it is better to not risk it.
I hope everyone is doing well. I am aware that FA camp in the states starts this Friday. I am disappointed that we were not able to make it again this year. However, our turn will come again.
My mum came home from Africa on Friday. It is really nice to have her home. On Sunday, after church, we had a family lunch at my sister's house. I am really amused by Tim, Liesl's husband....hehe. He seems to constantly have energy and endurance with the kids. Eliana is his daughter and you can see her in the photo. The other child is mine....Isaac. Uncle Tim is good at roughing Isaac up and in this photo he had been roughing Isaac up a while and Eliana also wanted to join in. It was really funny and noisy and crazy. I am amused. Moving right along.
My dad is still in Tanzania. Please pray for him. He has been really unwell and they think he has Malaria. He will be home this Friday.
Below is a picture of the wound on my hand where another lesion was taken. I am showing the photo just out of interest....hehe. Doesn't it look interesting. Alan reckons it looks like a spider. In real life, it does! It is healing well and looks a bit better than this now. It has dissolvable stitches in it. It has been really sensitive. I was concerned it was not ready to have the stitches out yet and then the surgeon told me they were dissolvable so that is a relief.
So I had my follow up with my surgeon today. He tugged and pulled at the wound on my head which he told me is healing well. It hurt while he was tugging. Even though it is healing well, he was not ready to take out the stitches today. It has almost been 2 weeks and for a person who doesn't have any health issues, he would have taken the stitches out but he is being extra careful with me. He knows FA can cause delayed healing and because of the pressure on the skin with the scalp, he doesn't want it to pop open just by chance. He doesn't think it would because it looks good but he wanted to leave the stitches in for one more week to give it time to heal real well. Also, I would probably bleed easily if it popped open so it is better to not risk it.I now have the pathology report in my hot little hands in regards to the type of cancer. On the phone the surgeon had told me that this tumor is unlikely to spread and is not a sebaceous gland carcinoma. I am still a little unsure about the details of this cancer. Today he confirmed it is not sebaceous gland carcinoma but an adenocarcinoma which is consistent wit a primary eccrine carcinoma. Let me explain. An adenocarcinoma refers to cancers within tissue that is glandular like the epidermis (skin). Adenocarcinomas can be in different places like the breast, armpits and other places. Mine is a sweat gland tumor......which is what an eccrine carcinoma means. Now I got the basic explanation from the surgeon. However, from researching it myself, I have also become to understand a bit. Sweat glands are obviously all over the body. Mine was in the scalp. It was completely excised with clear margins.
However, I am confused and a little alarmed. I mentioned that they told me this type of tumor usually remains localised and most unlikely won't spread. Then today he said this again but he said it CAN spread but is unlikely. So, he thinks I should still have my lymph nodes checked regularly. I looked it up and it mentioned that this type of cancer has a high potential of spreading......this is where I became alarmed and unsure of what I have been told. I was worried I was told the wrong information. I know that sometimes when we look things up without being a doctor, we can get it wrong........but I don't want to take my chances and now that I have looked things up I have HEAPS of questions. However, I really think the surgeon does not know much at all. He just cuts things out. I am interested to know why this tumor is much different to a sebaceous gland carcinoma. Less aggressive I have been told.......which is good......I am not sure if the location of the tumor in my scalp has anything to do with spreading being less....and they excised it all with clear margins....this could be so. So why does the info I have tell me that it has a high potential of spreading?
I also found out that this sweat gland tumor is also very rare. Not many cases recorded at all.....apparently.
SO, I do know that it is a better outcome than sebaceous gland.....but I am determined to understand all this different information I have on whether it can spread or not. Looks like I will need follow up.
I am talking to my head and neck oncologist about it more too. He will be able to tell me more than a surgeon about the type of cancer and about it more.
We are also getting in touch with Blanche Alter about it all. She has been guiding us through stuff since we found out about the tumor. I have written to her and copied her in on my pathology. We are trying to get some more info about the tumor and about any follow up that might be needed for an FA patient with this type of cancer. We hope to talk to her on the phone as well. She already has been very helpful when we thought it was a sebaceous gland carcinmona.
So, once I know more again I will let you all know. I know one thing......this tumor is BETTER than the sebaceous gland. The statistics of reoccurance with sebaceous gland were horrible. The surgeon seems really relieved it was not sebaceous gland. He said, "you certainly gave everyone a scare. A sebaceous gland carcinoma is something very different". So obviously a sebaceous gland carcinoma is not good. Praise the Lord it is not that. However, I still feel a bit alarmed. He also said he was SO relieved that the whole cancer was excised and that he was nervous it would come back with no clear margins. He didn't want to see me needing any harmful treatment.
Now, also another thing. I have something in the gynae area which I have been treating the last month. I am concerned about it. I am probably paranoid by the cancer scare i have just had. This spot didn't just "turn up" but has been caused by something but doesn't seem to be healing well even after a month of steriod therapy....so I am thinking I will have it biopsied. All I can think about is that this cancer in my head was left there for 6 to 12 months wrongly diagnosed and I don't want that to happen again in another part of my body. I mean, it may not be anything at all. However, I am scared not to biopsy it after what has happened with my head.
Well, sorry for writing so much. Please keep me in prayer and thanks for all your support.
I better start to settle. I am working tomorrow.
Love Charisse
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