Are they faking this serious illness?

[Justwantanswers]

I need answers. I have a relative who was diagnosed with HCL 7 months ago.. But unfortunately nothing they say about it is adding up. They cant do chemo because they are to weak. So just did radiation..they are taking Cladribine, but isnt that for chemo patients? They say nurses come and pick them up for apt's. But on medical insurance. And to top it off they want to take a year off of treatment. None of this makes sense. Am I wrong??? Please leave some insight

[AdrianUK]

I very much doubt that this person is making anything up. It would take a particularly pathological person to pretend to have blood cancer.

What you say about treatment makes total sense. Hairy Cell Leukaemia (HCL) is a type of blood cancer often patients are not treated with traditional chemo with many blood cancers this doesn’t mean that the cancer is not real. Or indeed that the person doesn’t have major issues. Weakness and fatigue is a major issue with many blood cancers. The medicine you mention is something that is used for HCL. And if someone is having side effects it’s understandable that they might wish they could stop the medicine for a while.

If you want to be supportive maybe you could offer to go with them to the hospital one time. Or just to and listen, and ask them if they have information from a great patient group like Leukaemia Care.

[Justwantanswers in reply to AdrianUK]

I appreciate your insite. Would the fact that they are smoking meth make any difference. Would that affect treament? They say they are waiting for a bone marrow match. I offered to see if i was a match and they instantly said family is often not a good match. Wouldn't a patient be willing to try anyway?

[AdrianUK in reply to Justwantanswers]

I guess that people who smoke meth get cancer too. I suppose I generally go by the motto of thinking the best of people until it’s proven otherwise.

It is by the way true that unless you are a sibling the chances of being a good match are quite low for a family member for bone marrow or as it’s more commonly called these days “stem cell”. You could volunteer to be on a stem cell register anyway that way if you do happen to match them or someone else you can make a gift of saving a life.

I guess there is really not much we can say further than this. Some people do lie tho to do so about blood cancer and to choose one of the rarer ones and get the drug name right, well I would have to just ask what benefit it is unless of course it’s simply a ploy for money somehow.

Like most things in life this is probably best worked out face to face with kindness and assuming the best until the worst is proven.

[Justwantanswers in reply to AdrianUK]

Thank you

[Cyprusfan in reply to Justwantanswers]

The family match is true. My husband and I can't donate to our son. However our daughter can being a sibling.

[MsLockYourPosts in reply to Cyprusfan]

One type of stem cell transplant is a haplo (half) match, with one of the donors being related. I don’t know how many centers do this type of transplant and believe it is used if there aren’t other options.

[2003UK]

Hi, what I have found is that blood cancers are not logical diseases. When I was first diagnosed how could I explain to my employer what I did not understand myself. They expected me to immediately have treatment, I would be 'cured' and we would all go back to 'normal'. My fatigue can come on immediately after I have overdone it personally emotionally or physically or up to 48 hrs later and it took me ages to understand it and my employer never did. I do not deal with what personally stresses me well. I honestly do not think anyone that has not had fatigue can understand it. I could not travel on the tube in rush hour as I got very feint, so I could attend a meeting locally, but not across London, again my employers did not understand that. With a compromised immune system I avoid a lot of social gatherings and people with coughs and colds. 15 yrs on and I get to know myself better each day. I believe treatment programmes can be lengthy for many reasons and are targeted at an individuals medical needs and recovery can be very slow because we have compromised immune systems and treatment takes so much out of an individual emotionally and physically. I broke my arm a few years back and I got all this sympathy and help, we all understood a broken arm. I know I have not answered your questions really, only my experiences. If you would like to chat to someone the Leukaemia Care Charity helpline is open Monday - Friday 9am until 5pm and they have a special evening service on a Thursday and Friday 7pm - 10pm. The number is freephone 08088 010 444. Look after yourself and just keep talking with your relative.

[Cyprusfan in reply to 2003UK]

You have hit the nail on the head. The fatigue is the worse thing for my 25 year old son. When it was first diagnosed he didn't look much different really and that can be confusing to some people.

I still can't believe I am on forums like this it's unreal at times. 😔

[Scream-N-kick in reply to 2003UK]

Thanks for this post most helpful explanation, I’ll get my employer to read it tomorrow hopefully help with their thoughts about my condition.

Just had a week in hospital for a chest infection, pumped full of antibiotics and on another week of them tablet form.

I’m not sitting at home if I can help it, got to live as normally as we can.

I’m going to try calling the LeukamiaCARE team at some point with my employers so we can both talk through what’s potentially going to work best at times.

I don’t sit behind a desk, I work outside and usually very active. But I do get worn out by early afternoon if I’m lucky.

[2003UK in reply to Scream-N-kick]

I get worn out by early afternoon too. I am now lucky enough to be a lady that lunches and goes to matinees, I don't do evenings and I am partial to the odd nap. Take care of yourself and in hindsight I would say keep communicating with your employer and work together for a win-win situation. Take care.

[DrunkJam_UK]

Honestly, blood cancer seems to be unlike anything else. it's confusing, exhausting, it has contradictory things, and meds difficulties and so on forever.

I would believe until proof says otherwise.

I would have been deeply suspicious of what my husband is going through if I hadn't actually been IN the hospital, AT appointments, AT chemo sessions etc.

The poor man was admitted to hospital with a catastrophic blood collapse in April. He was told he had ITP (he already had CLL which was until then, just ticking along )He was in hospital for 2 weeks.

Since then, he has had more admissions, been told he has transformed CLL, which turned out NOT to be the case, luckily. Done 3 rounds of FCR chemo, had weekly blood transfusions and monthly IVIG and GCSF. He has been taken OFF the Chemo, because his bone marrow just can't make enough of ANY type of blood cells to be strong enough to get through chemo.

He just had a paramedic check him out due to being very ill this weekend (the only reason he is not IN hospital now, is that he is due to see the registrar on Monday when he has his transfusion anyway)

he is due to start a new med regime on Tuesday, all being well on Monday. Ibrutinib. Except that, they think his pancytopenia MAY be Aplastic Anaemia, and NOT ITP, but they are hoping to see whether this new treatment (plus all the blood transfusions/infusions/injections) will help before they try something else.

Blood cancer is not like I thought of cancer at all. There's no, find cancer, excise cancer, chemo / radiotherapy, cure. It's impossible to predict, or to know what the *right* meds are, or to know what tomorrow, much less next week will look like.

Unless you outright KNOW someone is lying, it's so bloody complicated that, it's probably true.

[NicoleLeukaemiaCare]

If you or your relative wanted to get in touch with our UK haematology/hematology nurse, they can do by emailing [e-mail]

[NicoleLeukaemiaCare]

Hi there,

Welcome to the group. Really sorry to hear about your relative. 7 months is a relatively short time to adjust to living with an incurable cancer like HCL.

A brief overview of HCL treatment:

The aim of treatment is to reduce the number of abnormal cells to as low as possible. It is generally accepted that standard treatment will not cure HCL; but it does offer a very high chance of a normal lifespan with a good quality of life.

Treatment options include:

Watch and wait

If you have no symptoms when you are first diagnosed with HCL and your blood counts are not very low, your haematologist may suggest a ‘watch and wait’ approach. This usually involves regular check-ups and blood counts, as well as your haematologist advising you on ways to live a healthy lifestyle. If symptoms develop or the disease progresses, you may then start a suitable treatment.

Chemotherapy

Chemotherapy has a very high success rate in the treatment of HCL.

It does not cure the disease but it gives very good control and most patients can expect a normal or near-normal lifespan.

The main drugs used are pentostatin (2-deoxycoformycin or DCF) and cladribine (2-chlorodeoxyadenosine or CDA) which are purine analogues.

Rituximab is a monoclonal antibody which has been used widely to treat a condition called CLL and which may be useful if HCL comes back (relapses) after responding to treatment.

Splenectomy (surgical removal of the spleen)

This was a standard treatment for HCL before effective drugs became available. It may be an option if your enlarged spleen is painful and causing complications and your blood count results are reasonably normal. If you have a splenectomy, it may take some time for it to improve your condition, so it is recommended that you do not have any treatment for at least six months.

Interferon Alpha

Interferons are proteins that occur naturally in our bodies and help us fight infection. Interferon alpha can be used to treat HCL – usually only in cases where the numbers of normal blood cells are very low and a very quick response is needed. Once the blood count has improved, interferon can be stopped and treatment with cladribine or pentostatin given instead. Interferon is very rarely used nowadays.

Our information on HCL can be found here - please note, written for a UK audience but much will be applicable

media.leukaemiacare.org.uk/...

Please assume what they are telling you is true - it may not sound logical, but much about blood cancer can seem that way when you're told that cancer is treated and managed in a certain way. Blood cancer is very different to other solid tumour cancers.