what do you think

[Buhber]

Hello everyone I am writing our story to you in this forum in order to tell you everything. I thank all the people who shouted this space and all the members. It's about my girlfriend who has had chronic lymphocytic leukemia since the end of 2020, knowing that she didn't tell me that until recently (a month). After insisting on seeing her she had symptoms which I suspected abnormal. Tiredness, shortness of breath, headaches and bleeding (nose bleeds) from time to time... For the bleeding, it dates back a long time from his childhood. After insisting on it. She told me she was diagnosed with llc 2 years ago she didn't want to worry me apparently. During this period she had a treatment that lasts between two weeks and two months and I don't even know what it is. She felt better. Knowing that she took twice during all these two years. But recently everything has reappeared again. Immense fatigue, headaches, dizziness, vomiting, nosebleeds from time to time... Above all what complicates his situation is his menstrual cycle, it is painful and it causes him too much blood loss. Today she saw her doctor and him telling her that this is not a good sign. Within two days she will carry out new analyzes to see the state of her disease. She's only 23 now. I would love to see your opinions and advice. Knowing that what tears me the most is the fact that we are far away her and me. At a distance and we can't join for the moment. I would have liked to take care of her and be by her side. I apologize for my English language. Thanks

[AussieNeil Administrator]

Hi Bubher and welcome to our community. I see that this is your first post. Good on you for trying to find out how you can help your girlfriend, even if you can't be there with her.

Firstly, I would recommend that your girlfriend have her CLL (LLC) diagnosis confirmed. We have nearly 20,000 members and I think we might have one member diagnosed younger than your girlfriend. The median age for a CLL diagnosis is about 70 years of age. That is, half of all CLL diagnoses are in people older than 70. Very few people are diagnosed with CLL under the age of 30. Knowing the right diagnosis is extremely important in determining the correct treatment.

Secondly, standard treatments for CLL last at least 6 months, extending to 2 years for fixed term treatments. A treatment lasting two weeks to two months will not be long enough to provide a long time (remission) before another treatment is needed. It sounds like your girlfriend has anaemia (low haemoglobin) and low platelets (causing nose bleeds). That most likely means the CLL is in her bone marrow. Removing CLL from her bone marrow takes time. If you can share the results of her new analyses that would help us provide better feedback. Likewise if you can find out how she was previously treated.

Does your girlfriend also live in Algeria? Knowing where she lives could help our community members suggest nearby doctors for her that know more about CLL and similar illnesses.

Neil

[Buhber in reply to AussieNeil]

thank youI honestly don't know about the treatment she took before. but she did the bone marrow test I remember. she currently lives in France.

[AussieNeil Administrator in reply to Buhber]

There are excellent (world class) treatments available for CLL in France. I hope that some of our members in France can share their experiences with you. That way you can encourage your girlfriend to find better care.

[Buhber in reply to AussieNeil]

I thank you very muchhope she can cope with this disease and i would love to be with her

support him and take care of her.

[Psmithuk]

She is very lucky to have you to love and care for her, and I hope that she can soon find a way to treat this disease.I also hope someone from France will explain how she can get treatment.

Chrisx

[Hidden]

Hello

I just want to share that the blood loss during her menstrual cycle can be a somewhat "normal" occurence. Although it is causing pain, depends on type of pain. Some may be normal (cramping for example). Blood loss & other symptoms varies by female to female. She should consult with a specialist (ob/gyn) as there are many options to help.

The main reason I am addressing this part of your post is that I have the same issue in that area and it causes fatugue, etc. I am anemic and have low iron levels so during my cycle, I am much worse, even on supplements.

I will defer to the amazing people here in the forum for the CLL discussion as I do not have 1st hand knowledge.

Best wishes to you both~

[Mystic75]

Welcome to the forum, Buhber,Want to wish you and your girlfriend the very best and hope you are able to get the answers you are looking for.

It is touching to see how you care for your girlfriend. Support is so important and it is wonderful to read how you want to support your girlfriend.

Best,

D.

[Buhber in reply to Mystic75]

thank youthe news that she had a blood test two days ago. she has an appointment tomorrow with her GP. we will see the suggestions of his doctor and the appropriate treatment

[Mystic75]

That is good. The more information, the better it is. The 'not knowing' can be very stressful.

[Buhber]

update. my girlfriend to meet with her doctor and discuss the blood test results. According to the doctor everything is fine so far. he prescribed him supplements of vitamins C and D with zinc. with follow-up appointments later.thank you family