This is all new to me, and I don't know what to think! Help.

Amsterdamgirl · Regular Joined: 28 Oct 2009 Posts: 12

Aisha,

CONGRATULATIONS on the great results of your PET scan!

I have been reading your story as my husband has been just diagnosed with Hodgkins and got his first ABVD treatment this week. You are a real inspiration. Your kids are so lucky to have you as their mother. Please take time to take care of yourself also. My husband has not done much since he started his chemo - I think he is taking advantage of being waited on hand and foot Laughing

Where in London are you being treated? We were considering having my husband treated in London, as he is a Brit, but in the end, we decided to stay here in Amsterdam. The hospital is nice and close to home. I can imagine the hassle you have to go through travelling to and from your appointments in London.

Take care and hope to hear more updates soon.

aisha1

Cycle 3 - day 15............

Thank you for your replies everyone. Tonight I'm going to try and keep it short (oh Aisha, can you ever keep it short - let's see?!) well, in short I am feeling physically sick and tired.

Today I have had an array of new symptoms. Fizzy feeling in my lips, and numbness in my left foot. This is going to sound very strange as well, and a bit off-key but my two big toenails are coming away from my skin and falling off. At first they looked bruised, but then they started to come away from the skin which is very embarrassing - good job it's winter eh??? Or else I would be like the Grand High Witch from Roald Dahl's "The Witches", very appropriate for Halloween! Actually, my life seems to eminate a lot of different books or programmes........I am now likened to Anne fo Green Gables, I live with the Adam's family (I think they must have based their programme on my family!), I now look like a witch and I'm slowly turning into the BFG crossed with David Bowie in "The Labarynth". I might as well go full throttle and marry a frog that was supposed to be a prince, but turned out just to be an old toad after all (oh yeah, I've already completed that part of the story!). Laughing

Yes Aisha...........you have certainly drifted away from the point again, making this longer than expected! Come on - back to the point. So........

I have also felt very sick. As soon as the chemo started, 5 minutes later I started to feel sick. Me being me, I tried to talk (you know I lurve talking) and so I thought that the more I talk, the more I would forget about the sick feeling..........WRONG! I have felt sick all day, even with the anti-sickness. I have also felt very tired and my eyes haven't been able to focus properly for some reason. I think one is focussing at a different distance from the other and they water for no reason. My joints are also hurting in the morning, in my pinky fingers. This morning, it took about 15 minutes for them to open up.

Amsterdam girl, thank you for your comments and concern. I hope your husband is bearing up. I am being treted in West London, in Chelsea. I live quite close, and could walk to the hospital if I want to. I'm quite lucky in that respect.

There are positives to having the chemo, the most obvious one is; it kills the cancer! Laughing

but I have also noticed that it has made my teeth whiter! My freckles are coming out more (oh Aisha, is THAT a positive?) but I look like I have been in the sun on the day I get my chemo. I go a brown kind of colour as well, like I have a tan! Cool

I also have a crack with the nurses when I go to the hospital.....no, I haven't started SMOKING CRACK WITH NURSES, that would be so wrong at this stage! I just have a laugh with them. I'm sure that there are more plus sides, I just can't think of any right now, and here's me trying to get all inspirational and supportive for any one else! Confused

I'd better get to bed. I'll think of more and post them. Maybe someone could help me out? Think of any good things that have came from having chemo guys!

Take care of your husband. He'll enjoy being waited on hand and foot - don't all men? (and women in secret, right after they've completed the "I'm such a brave warrior princess, I can survive any clod or flu" bit)

You're rambling Aisha - half of the people reading don't get your jokes that you are having with yourself in an empty home, on your own, so stop, and go to bed! Rolling Eyes

_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

ChemoMan

Hi Aisha

my toenails dropped of as well...However it was only my big toenails. they have since grown back.

probably its tinea or another fungus that has taken hold because of your lowered immune status. I bought some OTC nail paint, but I don't know if it was that or the recovering immune system that worked....... Such is life.

Nice to see you posting occasionally even though you are feeling pretty rough. Hang in there soon this will be just a memory.

Cheers

PS I downloaded Anne of green gables Wink

Gonna watch it tonight.
_________________
Age 52
Diffuse Large B cell Lymphoma
Stage 2a
Finished six cycles of R chop 21 26th May 2008
Officially in remission 9th July 2008
Remission confirmed 1st October 2008
Remission confirmed 17 June 2009
http://cancerforums.net/viewtopic.php?t=9620
RULE NUMBER 1.....Don't Panic
RULE NUMBER 2..... Don't forget Rule number 1

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Hmmm, good things from chemo...

1. My dandruff went away.
2. It made me move a lot slower, and made me more careful. To this day I bump into people a lot less than usual, and overall I'm probably a lot less likely to cause an accident.
3. Lots of sympathy. Being a drama queen, I dig that.
4. I'ts easier to focus on what's important, and I don't sweat the little things in life as much anymore.
5. Not for me, but for other people, their arthritis went away.

I'm sure that other people can think of some more stuff as well...
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

aisha1

Also............

I have noticed that I feel like cleaning my home a lot more. That's a positive! I feel like I need to get things done.

I have a VALID excuse to have a break from work for a while (mind you I'm glad because I'm feeling battered nowadays) and I wouldn't have been able to go to work and attend all hospital appointments anyway.

I have had a chance to read more about my condition, my treatment and my prognosis.

I have managed to get over my fear of needles a bit! I am certainly more used to operations - don't know if that's such a good thing.

I have had time to think of what I want to do when I get better, and think of what I want to do for charity (somehow, I'll do something).

I'll post if more positives arrise.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

havefaith

Hi everyone,

Aisha you are so funny Laughing

The best thing coming from my cancer is i found a purpose in life. now i add something to this world.

Wish all people to get better.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

aisha1

Hi,

Zakia, I have been thinking about you today. I was going to look at your post in the thyroid forum. Hope you are doing well. When are you starting your iodine treatment? You haven't had your scan yet either have you?

Today I have been feeling so strange. I feel tired from inside. I also have a few symptoms that I am hoping someone can shed some light on?

I have felt like my muscles in my neck can't hold my head properly. My thyroid area is very tender as well. I have bruises on my thighs and I have no idea where they have came from?!

My tongue feels like it is swollen and is hurting, it feels like I have some sort of reaction going on? feels a bit like it's burnt.

I have one side of my face (left) that is hot, and one side (right is cold). This happened to me yesterday as well, and I don't know why. My temperature is normal - 36.0 so I am sure that it is a minor thing? Might be related to the muscle weakness/tenderness?

Has anyone else had this? I am tired, so I am going to bed, but I will check in the morning and see if anyone has answers.

I still have no money - can you believe this? So I have to go up to that office AGAIN tomorrow and complain, or shout or something. I don't know what else to do!

Cheers people, and good luck with your own problems as well. Joepet, you make me laugh when I see your clever replies sometimes. Not only to me, but more so with others.

Night.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

aisha1,
During my chemo I had some occassional wierd bruising. The Oncologist told me this was normal for my chemo regiment for my Hodgkin's.

I also felt the occassional mixes of temps in my body. My right leg might feel warm while my left felt cold. I just passed it off as the affects of chemo.

My neck muscles never did feel normal, especially after the surgeon removed the one node for a biopsy. However, 6 months later my muscels finally feel better. To be honest, I also found out I was sleeping different on my neck than what I did before. Mostly because my stinking veins hurt so badly that I no longer slept on an arm like I used to. It hurt too much. So when I added another pillow to compensate for the elvation that an arm was giving me then my neck seemed to get a lot better! Duhhhhh on me!

My tongue?...well it was definately out of whack. Temperatures where more volatile to my tongue. Cold felt great while heat felt unreal!

Wow...I went through so many things that have made me count my blessings.

aisha1

Thanks for that. I know what you were talking about with the arm pain. It was horrid until I had a line put in my chest. It felt more like bone pain than pain in my vains. It kept me awake at night as well.

I have never felt the chemo affect me as much as it has this past few days/week. I really feel terrible, even today. My neck is still hurting and I am trying to forget it and get on with things, but my legs are weak. I have pain in my abdomen all the time, that is like a stabbing pain and it is very annoying to say the least.

Two people have told me today that I am getting fat, which has not helped me. It makes me feel like shit and I don't know how to handle it. The weight shows on my face, and so it is the first thing that people notice, and mention. I have not put on weight gradually, it has all been over a few weeks, and so everyone has noticed in the last few days. I hate it. I'm still a young woman, and I know it sounds stupid, but I care about my appearance. I am beginning to really feel shit about this. Oh well.

I am dreading the next few weeks of chemo. I don't know how I am going to handle the side affects now. I am snapping at my kids and I feel bad about it, but I can't help it. I'm tired and I don't have a chance to just relax the way that I wanted to. I have to do something about this. Having the kids and cancer is not easy at all. Now I know what my Mum went through when my sister and I were the same age as my kids are.

On top of that, I had a phonecall today. I have to go up to the Job Centre tomorrow because I am not going to get any money from them, and they want me to go to work. I have to do something about this tomorrow. They have worked out the system to such a degree, that I am stuck between a rock and a hard place. I think I have to write to my local MP about it all.

Have to go, but thanks. Oh yeah, cinnamon - how many cycles did you have and are you opting for radiation? My haematologist was considering ot for me as well.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

SingleDad

What is your cycle count now??

Mouth and tongue issues are annoying - still have a bit but my chemo was different.
_________________
Age 61
Diffuse Large B cell Lymphoma Stage 2/3
CHOP+R started Feb 26th 2009
Completed 6 cycles June 2009
Diary here http://cancerforums.net/viewtopic.php?t=12003
Officially in remission July 9th 2009 Wink

Three rounds of Intrathecal completed July 29th
Radiation to come as a prophylactic measure.
1st Radiation Sept 9 - 17 does completed Oct 1.
No more treatments scheduled
Heading to South Africa in January - once the itching stops Mr. Green

havefaith

Hi everyone,

aisha wish you gonna feel better keep having faith that tomorro is always gonna beter than today. you still alive and your hodgin cancer have a good survival rate. everything will be better after chemo.

I put a new post in the thyroid forum, you can read it. the tyroid cancer forum is a died forum,only 40 000 person gets thyroid cancer and most stay alive after 30 years in 98% something like that, so no many persons post Sad

I told my cousin first about my cancer, than my best friend, then my hausband, brother who told my dad. so now the secret is out, i am releave.
_________________
28 y f
thyroid cancer (28-09-09)

thyrodoctomy total+ sternotomy median 2009

what is worth the price always worth the fight.
stay strong and live strong.

aisha1

I have not slept well at all. I needed that sleep, but I woke up at least 12 times, and couldn't get back to sleep because my back and neck were hurting. I had two cold sweats. I don't know why this is happening? I keep sweating, but it is cold. I don't have a temperature either.

I am cycle 3, day 20 or something like that.

I have so many things to do today. I feel like killing someone as well. I'm going to take it out on the Job Centre! Laughing

Thanks guys. I know I have to remember that tomorrow may be a better day............

I'm starting to feel sorry for myself.
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

joepet · Senior User Joined: 18 Dec 2008 Posts: 288 Location: Japan

Well, maybe in the grand scheme of things, you needed your sleep deprivation in order to get in the proper frame of mind to "discuss" things down at the Job Centre. Wink

I know you don't like taking unnecessary meds, but if your doctor gives you any pain killers or sleeping aids then don't hesitate to take them as needed.

I don't have any answer on the sweats, but don't forget to mention them during your next chemo session. When I was having my night sweats, I would just sleep in my underwear and cover my bed and pillow with towels. When I woke up drenched, I just dried myself off with the towels, threw them on the floor, pulled on another pair of unmentionables, and I was good to go for another couple of hours, sometimes even fast enough to fall right back asleep! Hmmm...that does sound a bit too much like a "guy" solution to the problem though. Embarassed

http://www.youtube.com/watch?v=smONcs8kF0o
_________________
Age 37 (36 at diagnosis)
Diffuse Large B cell Lymphoma
Stage 1AE (localized in colon)
Began six cycles of R chop 21 3rd Dec 2008
Finished R chop 21 Apr 2009
Complete remission as of May 2009

cinnamon · Regular Joined: 02 Nov 2009 Posts: 22

aisha1,
I was scheduled for 6 cycles of ABVD and then possible radiation follow-up. At the begining of cycle 3, my body was responding so well to the chemo that my oncologist ordered a CT scan. She ordered that scan for two reasons... 1) She thought I was responding very well to treatments and my body was building back the white blood cell counts on it's own and without that dang Nuelasta shot (That stuff just killed me for two to three days after receiving it) ... 2) I was ready to bail out of the chemo because I was depressed and tired of feeling like a truck had run over me.

The CT scan came back with no measureable sizes of nodes that would cause alarm if we didn't already know that I had cancer in the nodes.

My doctor and I sat down after the test results came back and she asked me to endure at least one more cycle of chemo and then she promised she would put through another PET scan to see what those results might come back as.

The PET scan came back showing I was clean of cancer, as best as a PET scan can pick up on. I am told that the PET scan is a good tool but it certainly is not definitive as there might still be some cells small enough that are not shown on the scan. Nonetheless, my oncologist called me, gave me the news, and asked me to still come to see her at my next scheduled appointment.

At my next appointment the oncologist and I sat down and talked for the better part of a half an hour. She felt like that because my body had responded so well, and because I had been through 4 full cycles of ABVD chemo, that I could be finished with chemo. All I could do was to sit and cry like a big ole baby. Imagine that....ha ha..... My oncologist also asked me to consult with a colleague of hers that is a radiation specialist in a cancer center. I did so. The specialist checked me out with a full examination. She then showed me my PET scans on her computer. Long story short...she suggested 3 1/2 weeks of daily radiation. She gave me an 80% chance of being in complete remission prior to radiation and thought that I would increase my chances of "cure" up to 96% if I would endure the radiation. However, she also gave me the straight talk about what radiation could possibly cause 10 years down the road.

Since my affected lymph nodes are in the areas of the left side of my neck, directly behind my breast plate, and 1 node next to my throat, then she told me that there was a very slight chance that damage could be done to my heart, my throat, and that there would be a remote chance of stroke sometime down the road since radiation to the neck area is sucseptable to that.

For a week now I have fought with this decision. I have agonized over it to be honest. I feel like I have a choice to make that there is no right or wrong answer to. I feel like I choice choice where there is no correct decision to be made. It's almost a thing of weighing out the odds and playing the odds to the end and hoping for best.

ChemoMan offered up a great article for me to read. I started there and have researched this damn thing to death to the point of where I am growing tired of caring about this stinking decision!..LOL...however, I woke up this morning and on the drive into work my decision just came to me out of no where....NO RADIATION. I just feel like the odds are against me in a greater way there.

So....hang in there with the chemo...it worked for me, it'll work for you. Yes, there are times where it gets very tough and mentally draining. Believe me though, the fight you are putting up is well worth it. I'll offer up a prayer and good thoughts for you. Hang in there baby!

aisha1

Thanks for all input.

I went to the hospital today because I am certainly not myself. I phoned my chemo nurse and she just told me to come in this morning. My chest started to hurt as I was getting the kids ready for school. I took them to school, phoned the chemo nurse, and she told me to come in, after I had eaten in the cafe I was in (skipped breakfast because of acid in my stomach).

I went in, and they gave me a full once over. Blood pressure was a little bit high, but I was ok. The sent me for an ECG which came back normal. Then the chest pain started again while I was there. Good job, because they had a chance to see the cold sweats that I was talking about, and feel how clammy I was 2 minutes after.

They took my blood and I fainted (not because of the bloods, it was from my hickman). Don't know why. I woke up and they were giving me oxygen through a tube in my nose. I didn't even knwo I was fainting, I just heard a loud pitched noise and that was it, I put my head back and knocked out.

They have done something called a blood bacterial something?! The will check for cultures in the blood over the next few days. I went to pick up the kids from school, then went BACK to the hospital for a chest x-ray and I'll find out the results soon I guess.

I'm still weak. I came home and went to sleep. Didn't want to even get up, but I had to. I'm going to bed early again today.

I had no chance to "discuss" my situation with the job centre. Wink

Tomorrow's another day!
_________________
Diagnosed Hodgkins lymphoma, nodular sclerosis, grade 2.
Stage II/IIIa.
Chemotherapy ABVD started August 2009.
Still looking young Wink

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