FROM NINO

[nantidze2001]

Hello everybody,
I know the forum language is German, but I can not write in German, also I read, understand and speak language quite well, sorry for that. I was diagnosed with Hodgkins lymphoma 2 days before my 39th birthday, in Fabruary 2009. The diagnoses came absolutely surprising and shoking, but I think I already found some form of coping with it. I started Chemo abvd on 12th, as I did have not much trubbles from disease, now I feel quite ill, with mouth sores and absolute amazing fatige. I am alredy quite passled, can I stand that 7 times more? I can do not much, mainly lying and passively living as a plant. Was it also so hard for you? what can one do to overcome this fatigue?
Wish you all, the wonderful day and much energy to enjoy it,
kindest regards
Nino

[nantidze2001]

hI EVERYBODY;

I AM LIVING IN VIENNA AND AM TREATED BY PROF:DRACH; HAVE ANYBODY EXPERIENCE FROM VIENNA: THEY DID NOT INVESTIGATE MY BONE MARROW; IS IT NORMAL?

THANKS A LOT
NINO

[speedy]

hi Nino,

welcome here. My english and my italian is not very good.
I try a simple answer.

Its not normal, that nobody looks at bone marrow. Ask the doctors when you are next time there. Normal staging includes this.
My husband also was surprised of the cancer, he was fit. Try to be not so much in trubble and try to sleep enough. Then may be it will be not so hard. You need all energy for fighting against cancer and get your health back!!
A successfull fight - you can do it! Gabi

[nantidze2001]

Thanks a lot for answer,
My German is not so bad, you can freely answer me in german. I am coming from Georgia-Tbilisi, living at the moment in Vienna. I am affraid my Italian is even worse than yours. Nino is very frequent female name in my country. This all is hard on me and my family also. My parents do not know about my diagnoses, they are living in Georgia and I constantly was traveling between two countries, it is so hard to lye all the time I speak with them, they are surprised I do not come so long, my mother is ill, she has some form of Alzhaimer, I do not want to add to that all, worries about me. My father comes in one week to Vienna and I will try carefully to tell him, I do not know yet how. I just sent my daughter(14) to Georgia, because am affraid will not have enough energy to care for her, honestly I also did not want that she sees me so down, generally I am very lifeenjoing person. My husband is separate thema. He is so depressed, that inclosed himself and nearly does not speak with me. He is so angry on life, tells it is not fare. I try to explain him that we should take everything what life brings and carry on, there is not such thing as fearness in life, but I am not shure I reach him. Probably it takes some time, before all can cope with me beeng ill. Did you also had difficulties in families? It is so at the moment ,that I have to support everybody, not otherwise and this together with chemo I find difficult.

The letter is quite long, sorry, probably I did need to speak it out.
Thank you,
Nino

[sparklingmarc]

Hi nantidze,

now, you're posting in the best fitting subforum!

Well... I think for most of us it's not so easy to write in English, but you wrote it's allowed to answer in German? -> Leute, wir dürfen auch auf Deutsch antworten!

The question what's life about and "why does it have to happen to me" is senseless I think. A fact is that Morbus Hodgkin is one of types of the cancer with the very best options and chances in therapy and to return to health again.

Of couse at the end a chemotherapy is a chemotherapy and this is no fun at all. But you'll climb up that hill for sure... we all succeeded this and you'll do it equal. Just think step by step: The next step is not "7 times more" but just the next single one.

All the best!

[salita]

Hey Nino!

Welcome to this forum, though the circumstances are not pleasant, unfortunately.
I also had the ABVD chemotherapy, and I couldn't have dealt with my everyday life (cleaning, buying food, carrying shopping bags...) on my own, I have to admit. I hope your husband can support you. But actually, my second chemo was the worst, after that my body kind of got used to the therapy a bit, I think. You'll see, soon your cancer is dead, so your body can cope with the meds better! Of course, it's a very hard time, definitely. But your chances of being perfectly healthy soon are excellent!

So obviously you are dealing better with your illness than your family, and that's the main problem for you currently. Hm, I told my family back then what they could do to support me best. So they could help me and be there for me, what made them happy (well, as far as one can be happy in that situation), and I had some privatsphere. Actually, I never talked to my parents the first days after chemo, but my (ex-)boyfriend did, so my parents didn't know how bad I actually felt Give them some time to adjust, but be careful not to be more concerned about them than about yourself. Now, it's your part to deal with the cancer and the therapy, and their part to support you, and not to pull you down. Maybe that's what you should tell them nicely, but clearly...?

I wish you all the best, Sarah

[nantidze2001]

Thanks a lot people, sorry Marc probably I expressed that you could write in German wrong- as allowence, I did not mean it, I meant I really read all other letters in forum in German, so did not want to bother you by switching on other language. Sorry, I never needed to learn German fluently, as never worked in Austria, I worked in Georgia always, sometimes in Canada, so from here comes that I can not write in German, I am in Austria, because my husband is Austrian, I never wanted to emigrate or to stay here forever, today this are only the circumstances which keep me here.

Thanks Sarah, it so kind of you that you answered me. Seems you are right, I should change myself a little, always I thought about everybody and took care of everybody, now came the time to slow down, to think a little about myself. I think such a difficult challanges need time for most people to addapt, I will wait, have so much time as never to think and look back, to find the answers and to become better.

Much love to all,
Nino

[julsi]

hi nino!

I'm also from vienna and i was also treated by Prof. Dr. Drach in the AKH.
My uncle said that he is the best one for the hodgkin disease. I'm done with the chemo since november 08. Now I feel good and got my first check next week at Dr. Drach.
I had also 2A. Did you make a PET? Do you also know Dr. Lamm at the station 16J? He did always give me the Chemo. He was very nice.

Its normal that you dont feel that good now. You have to drink enough and sleep and after the 5th day i felt better. I also postponed some chemos because i didnt feel good enough. that wasnt a problem. Also Dr. Drach said that is no problem.

I hope u feel better and believe me soon you will be healthy again!

nice greetings
julsi

[nantidze2001]

Thank you Julsi,

So nioce of you, to answer me, I did read your post, it was very interesting to share your opinion, I did have only one infusion, second I will have on 26th. It was also 16j day clinic, but I do not know the name of the doctor which gave me infusion, I was so absolutely scared, that did not think about communicating. I did have PET before treatment was started, Dr.Drach says it is Ia or Ib stadium. I really drink much and as I can do not much I am sleeping enough. I also did not have bone marrow investigation, Dr.Drach did say in my case it is not necessary, so I believe him. Do you think I should call ambulance when I need anything? I feel at home quite unsave if I need serious help, like for bleeding or something simmilar, I feel quite stressfull to come to AKH and wait there for hours.
Hopefully you are right and I will be healed.

Thanks a lot,
Nino









Thanks,
Nino

[julsi]

you got your first chemo at 12th of February. well, its normal that you dont feel very well now. The first days after the chemo I also was very weak and lay on the sofa the whole day! But after 5 days it was better and than i felt good again!

1a or 1b ... so you got the best chances to get healthy again after this sh... time!
I also didn't have bone marrow investigation, he also said its not necassary because i only got the hodgkin cervical. after the treatment we made a PET again and it was good again! I had 6x ABVD without Bestrahlung(i dont know the word for it).

Dr. Lamm is the one with glasses and dark brown curly hair. I liked him very much! When I saw him i wasn't that scared anymore!

You can call the ambulance whenever you want!

I hated waiting 2 hours for the blood and the chemo. So I made it like that the following chemos: One day before chemo I went to the AKH 16 J and ask if the can check the blood today. Then next day in the morning i called them and asked if the blood is ok and if i can come or i have to wait some days. So if it was ok, there wasnt the drama of always thinking"Will the blood be ok and will i get the chemo today, or will it be postponed?"...
So i waited just 30min for the chemo and than i felt always better.

I hope you understand what I like to tell you!

Maybe you will send home on 26th because of the blood. In my case it was like that. On my second chemo i was sent home again because of the blood and i was very said and i didnt understand why. Then they told me that its completely normal that the leucozyten aren't that good so i came again one week later.
and after that experience i made the bloodcheck one day before.
Maybe its also better for than waiting 1 1/2 hours! That was hardest for me! I became that tired and sick just because of the waiting.

Lg Julsi

[nantidze2001]

I understand what you mean, I thought about it, and arranged the blood done in Labor near my house, which will be sent to day clinic and to me by fax on 25th and I will know one day before if I will be recieving chemo.

After chemo I will have radiation therapy(rd), Probably you were luky not to have it, it should not be very pleasent procedure either.

All the best to you,
Nino

[nantidze2001]

Dear friends,
It is already 6th day after first chemo and I have still not much energy, very havy feeling in stomack and pain in bones. Is there anything I could do to improve my condition?


Thank you,
Nino

[salita]

Hi Nino!

I am sorry for you that you are feeling bad right now. You should remember to drink a lot, especially the first few days after chemo. Even though that might make you sicker in the beginning, you'll quickly start feeling stronger and less nausea! Once in a while a glass of coke also helped me some. If it's possible for you, you could also try to take a little walk, or at least get a lot of fresh air...

[nantidze2001]

Thank you for advice, I will try to get some fresh air,

Hopefully it helps,

Thanks Sarah, I really appreciate it...

[sparklingmarc]

Nino, this therapy with chemo and radiation is sometime very hard - no doubt. But it is worthwhile, you have a very great perspective to come back to normal life again.

And maybe the next chemicals are not this hard for you. I remember my therapy, sometimes it was very easy... next time it was very hard. I think it depends a little bit on your psychology / mind. Try to be relaxed and optimistic, don't be scared... you'll see, it will be easier.

And don't think about the radiation now. At first this is no fun, but not THAT hard and second: It's far away in the future.

By the way. I got the same like you: ABVD and 30 gray radiation after this... and I'm fine today.