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

havefaith

Hi everyone,

aisha, now i get it about your first hausband. i always said the most precious thing in life is our pride. for my problems they will finish one day, every thing have a end. Smile

take care of yourself and maybe after all your trip in those hospital you will come back home with a new hausband (a doctor)but a kind and sensitive one this time. never loose hope.
_________________
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.
january 2010 treatement radio iodine
february 2010 total remission

aisha1

Hi, feeling much better and my stomach ache is only there for about 20 minutes each time, in the evening. Much better!

Kids are back and not causing as much agro! They are being quite good.

I have been to the gynaecologist (spelling?) and I had a chat with them. They showed me the ultrasound on the internal system, and the report. It is my left ovary that they are looking into. They have called it a "complex cystic mass, meausuring 9cm x 5cm". I'm not sure why it is described as complex, but anyway, I am being sent for an MRI on my whole uterus and abdomen because they need to have a more detailed look at it. I think it may be this thing that has been causing my pain sometimes?

If this thing was my cancer, I'm sure that it would have been reduced by my chemo, but it has not gone down. So, what are the chances that I have 2 different cancers? Not likely. I'm almost certain that this is a benign cyst and that it may/may not have to be removed. I'm not wanting for any more operations. Laughing

I am not due to see my haematologist for another 3 weeks, as he has made my appointment late for some reason. I used to see him every 2 weeks, but now it is every 4. Not sure about what happened at the meeting they had about me. I might phone my chemo nurse and ask.

So, banana milk was goooooooood. Please use milk, 1 or 2 bananas (very ripe), and my secret is to use a touch of vanilla essence, it tastes a bit like banana ice cream. Mix it up and whisk it so that it becomes frothy..........uuuuummmmm! Very Happy

I'm off. I have lots to do. I feel quite good today. Oh yeah, for anyone else in the UK reading this, thinking about what happens with the benefits system, they have awarded me Income support (£57 a week). I am not entitled to any element of sickness, or any benefit for being ill. So, I just have to make do with that.

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

Amsterdamgirl · Experienced user Joined: 28 Oct 2009 Posts: 52

Aisha - I'm sorry you have been having a cr@ppy time lately and glad that you were feeling better yesterday. I really feel for you, as my husband has me and my mother-in-law looking after him, and he really only needs to focus on getting well. You have your beautiful children to look after, and this adds additional stress. So you have every right to whinge and vent! I am so surprised that the UK government does not offer help to you. I do hope that you can talk to social services to get some help, although I can understand why you don't trust them too much at this point. Please try to rest as much as you can.

I also hope you get your MRI soon to find out what's going on with your ovaries.

If you've been enjoying banana milk, you might like the smoothies I've been making for my husband: one kiwifruit, one banana, about 5 tablespoons of live yoghurt and some juice of your choice (I usually use apple juice), and blend everything in a hand blender. Yummy!

Stay strong.

aisha1

Hi,

I'm in cycle 4, day 1. Feeling more and more sick as the chemo progresses.

I have no internet at home ("At least she'll shut up for 10 minutes!") Laughing

I am in an internet cafe and the space bar is stiff. Not writing a long message because it is annoying writing like a baby!

My neurophils are 0.6 and so I need to go back to the hospital on Tuesday to check them again. At least I know that my chemo is working!

Tired and loads of stress from outside influences............it's never plain sailing for me, but at least I have my health Wink

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

Amsterdamgirl · Experienced user Joined: 28 Oct 2009 Posts: 52

Aisha,

Glad you still have your humour! My husband's neutrophils were .3 on day 15 of cycle 1 and they gave him Neulasta 24 hours after the AVBD to boost the white cell count. I hope that on Tuesday, your neutrophils either bounce back again, or that your doctors give you something to help you get them back up. Did you have your MRI yet? Take care.

joepet · Senior User Joined: 18 Dec 2008 Posts: 377 Location: Japan

Hi Aisha. I don't think I would be messing with an internet cafe at 0.6...my hospital probably would have tried to have me quarantined at that level!
_________________
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

Hi,

I haven't managed to sort the internet yet and it is just another battle against a giant that never answers and just another automated machine - sign of the times we are living in. They have also overcharged me for the last 10 months! They have admitted to it, but as usual have not managed to rectify it!

I had my neutrophils checked and it seems like they are climbing again, so that's good. I am noticing that I am becoming increasingly tired and sometimes bad tempered because of the tiredness. I also have more aches and pains, but what can you do? Nothing.............just have to put up with it most times and see what happens.

My central line was looking a bit dodgy last week, and is looking a bit bad this week as well. I have to go in tomorrow for them to check my blood again tomorrow and so I'll get them to look at it.

My neck always hurts a few days after chemo, and my muscles feel generally swollen in my whole body, don't know why.

Thanks Amsterdam Girl, and Joepet - I don't feel like I'm dying yet, and so I would consider myself not too bad. Laughing

I have an MRI booked for the morning of the 30th so that they can have a look at my whole abdomen. They ran tests for CA125 and another tumor marker, but I can't remember what it was. I will ask them what happened when I go in tomorrow.

I'll have my internet on again soon (I hope). It is hard to not have it once you get used to it. Sometimes I think "Oh yeah, let me check that........" and then realise that I can't check the price/position/availability etc......

I'll be back (not in a Terminator way Wink

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

aisha1

Ha! You thought I'd died and you'd gotten rid of me didn't you?! Better luck next time, I still have 7 of my nine lives left......... Wink

I hope everyone is ok, and doing well.

My line was infeted but they caught it before it went past the cuff, which meant that I have some bactroban and some erythromicin, and I am getting better. I think that my doctor is considering whether my next chemotherapy will be my last (Cycle 4B) as my body has reacted well and I have an appointment with him on the 30th to seeif I have to have radiotherapy as well.

On the other hand, my gynaecologist is taking my cyst very seriously, and has cc'd me a copy of a letter that she has sent to my doctor about the situation. I have an MRI (also on the 30th!) so I will see what's happening there......but I think it's not much to worry about to tell you the truth. I think it's benign and they may just take it out in a day proceedure - well that's my pre emptive diagnosis anyway! Laughing

I feel lost without the forum sometimes, but today I am feeling great which means that I can come out to the internet cafe and have a little browse while the kids are at school.

Hope everyone is doing well.
_________________
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: 29

Hoping that your last round of chemo is close. Very Happy

When my oncologist told me that I might be on my last round I was so excited yet a little cautious to get very excited.

Hopes, prayers and thoughts go out to you.

Have a great day!

havefaith

Hi aisha

how are sweety? we really miss you. where chemoman , joepet and the others, when you go they are missing too.

i really wish tot hear inshallah that you are clean of cancer. take care of yourself.
_________________
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.
january 2010 treatement radio iodine
february 2010 total remission

havefaith

my post miss to many words.lol
_________________
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.
january 2010 treatement radio iodine
february 2010 total remission

Amsterdamgirl · Experienced user Joined: 28 Oct 2009 Posts: 52

Aisha - yes, we have missed you. Glad to hear you are feeling well and that you might be almost done with your chemo! The 30th will be a big day. Keeping my fingers, toes, everything crossed. Will you get the MRI results on the same day too?

joepet · Senior User Joined: 18 Dec 2008 Posts: 377 Location: Japan

Hi Aisha. Always good to see your posts! Hope you gut feeling diagnosis is correct, and that you are very close to putting all of this behind you!
_________________
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

Hey guys.....

Well my gut feeling on my diagnosis might have been a bit on the hopeful side?! Yesterday I had what I am hoping was my last chemo, but I have to ask my haematologist on Monday. Then I asked the nurse to check the system for the results of my CA125 marker - normal range is between 0-35 but mine is 46. This tumour marker is especially for cancers of the womb and ovaries, so I need to look into it more with my gynae doctor once the results of the MRI come back. They should be back by the following Friday.

I have (of course) been looking up ovarian cancers. It seems that they are more common in older women, post menopause BUT of the ovarian cancers that are most prelavent in younger women, they are usually classed as dysgerminomas - meaning that they are germ centre derived.

This is interesting for me, as Hodgkins is usually germ centre derived as well. I'm wondering if there is a link. Good news is, The chemo for dysgerminomas includes bleomycin and vinblastine, which I have already been having. That also may explain why I had uptake in my pelvis on my fist PET scan, but not in my second, and it is now confined to the ovary (may be where it began?)

I'm jumping the gun a bit aren't I? Anyway, I should wait until Monday, and then the following friday to work out what the probability is, but thought that a little research has never done me any harm. The only thing I am a bit cautiousof is if I have to have a pelvic biopsy and my neutrophils are low? Anyway, I'll keep you all updated.

Just another hurdle really, but we'll see what emerges........ Very Happy

Hope everyoneis also doing well.

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

aisha1

Please help - I hve a dilema!

I went to my haematology appointment on Monday after my MRI. He has left me feeling very confused, and I don't know wht to do, and this has got me thinking 24 hours a day about what route to take! I'll tell you why.........

He told me that after 2 cycles of chemo, my PET scan result was so good that my cancer had almost gone. I had an uptake of 1.0 which is very low. Since then I have had an extra 2 cyles of chemo (4 rounds) and so the Dr hs told me that I now have to make a choice:

1) I can either take another 2 cycles of chemo, bearing in mind that this may cause secondary cancers, and I may be in receipt of chemo that I do not need, and therefore I am exposing myself to side effects that might not even be needed. I ws told that this could even cause me to have luekamia in the next few years! Confused

2) I can go on the advice that he is 99% certain that ALL of my cancer has gone by now, and we could stop now, and re-scn in 3 months to see what's happening. IF my cancer has come back when they re-scan then I would need a stronger chemo and also a stem cell transplant.

I know what you are thinking - why not just scan me now and see if it has gone? Not as simple! If there was any cncer remaining it would be so minute that the PET is likely to not even pick it up and I wouldn't know anyway!

On top of this, I don't have the results of my MRI yet and I suppose that my decision is going to be partly based ion this outcome. I will probably need a biopsy on my ovry as well and if I crry on with my chemo, they may delay my biopsy because they won't do it while my neutrophils are low. Also, if I need some sort of chemo for my ovary, they will have to stop the ABVD anyway I think.

So. What shall I do?

I wish he wouldn't have left it up to me. I have said the obvious to him such as "You re the doctor" and "Consult another member of the team" but he has done this, and has said that even the team are "Up in the air with this one, they said the patient should choose".

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

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