Cll and anti depressants

[norahmaria]

Hi everyone, does anypne have any experience of anti depressants when not on active treatment for cll ?

[alice111]

My husband is on watch and wait for CLL diagnosed 2.5 years ago .. He has been on anti depressants for about 5 years .. What's your question ?

[norahmaria in reply to alice111]

Was just wondering if there is any medical reasons why we shoukdnt be on them, in terms of affecting our condition. Feeling ery low and considering asking the gp for some help.

[RemingtonSteele]

I'm on 200mg of Zoloft nightly and at stage four still on Watch-and-Wait.

[norahmaria in reply to RemingtonSteele]

Thats good yoy are still on w & w. Just wondering if ok to take anti depressants with cll. Trying to stsy off them as never taken them in my life but feeling like I may need some help now. Thanks.

[PaulaS Volunteer in reply to norahmaria]

Hi Norahmaria,

I'm sorry to hear you're feeling low...

I certainly think it's worth asking your GP for some help. I well understand that you'd rather not take more medications, but sometimes we need something extra to help us through... Anti-depressant medications can make an amazing difference (though some take a few weeks before they kick in). There are various different sorts, and it would be good to check with your haemo doc that there will be no problem with whatever is prescribed for you.

Have you had your Vit B levels checked? If they are low, especially B12, it can cause depression as well as deep fatigue. Sometimes taking Vit B complex tabs makes all the difference (though some people cannot absorb B12 orally and need injections).

How long have you been feeling depressed? Short ups and downs are part of life of course, but having CLL and Richters and strong treatments like CHOP will have given your whole system some very hard knocks - to put it mildly.

If you're up to it, then keeping physically active does help the spirits as well as the body, but I know when someone is really low, they need more than that.

I hope you find something that helps. Let us know how you go...

thinking of you,

Paula

[norahmaria in reply to PaulaS]

Thank you for your lovely supportive words paula. Strangly I felt more positive when I was on trestment and in and out of hospital. My consultant is pleased with my response to the treatment and so I guess I shoukd be feeling happy. I think the reality of everything seems to have kicked in, when on treatment you are caught up in hosp visits etc and then all of a sudden it stops and then you have time to think about what you went through and will most likely go through again. Sorry if I sound negative, I know many people out there are much worse off .

[charliegirl in reply to norahmaria]

Hello there. I'm sorry you're feeling so low. I can tell you that life events conspired to make me very depressed some years ago and I needed antidepressants to raise my mood sufficiently to function adequately. This was several years before I was diagnosed with CLL. I have had to accept that I am now on antidepressants long term and took them while I was on w and w, and on active treatment too with no problems. I also had a course of psychotherapy which played a major part in helping me, and which may be an avenue your doctor recommends.

I also think that the challenges of coping post treatment are often overlooked by medical staff, whether for CLL or any other malignancy. Attending hospital so frequently, and being so very closely monitored as well as having an end point in sight, during treatment certainly carried me through. Afterwards I felt really low for a while.

Good luck with your visit to the doctor. Taking this first step is the most difficult and important one.

[norahmaria in reply to charliegirl]

Thank you charlie. I definetly agree that our psycholoical needs post treatment are not addressed. I totally u derstand that our physiological problems take priority but I also think a more holistic approach is needed which deals with the emotional impact. While in hospital I made very close friendships with two lovely women on two seperate admissions. Both sadly died within 6 weeks of each other. I was devastated and it served as a sharp reminder of my own mortality. I didnt talk anout my feelings with anyone afterwards and still feel very affected by it.

[charliegirl in reply to norahmaria]

Dear Norahmaria

I really feel for you here. These were very important bereavements especially in the context of having journeyed some way together at a very challenging time, and you badly needed the opportunity to acknowledge them. And yes, they also hit hard re your own vulnerability.

I totally agree re the need for a far greater holistic approach, . For now I am glad that we have the CLLSA forum where we have the opportunity to share these difficult issues. The support of others going through similar experiences is at times a great comfort and also reassuring to know that you are not alone.

[norahmaria in reply to charliegirl]

Absolutely. Only sorry I only found out about the support group a couple of days ago. Thankyou for your kind words. Wishing you all the very best.

[Newdawn Administrator in reply to charliegirl]

Yes you make very sensitive observations charliegirl. As we go through this journey we meet and become close to fellow sufferers some of whom don't survive. Quite apart from the lack of an holistic approach to the actual treatment to take into account the emotional pressure, there's the issue of dealing with the loss we feel along the way.

It's no wonder Norahmarie feels as she does. It's a phenomenon known as 'disenfranchised grief'. A loss that society doesn't recognise but as we know from posters on here, shared suffering forges strong alliances and it hurts but is hard to have acknowledged when those 'friends' lose their fight.

Sites like this are important to allow those feelings to be aired because they do bring our own sense of mortality to us too close, too soon.

Newdawn

[norahmaria in reply to Newdawn]

Thank you newdawn. Im so pleased to have found this group. A place to share feelings with others who understand. No matter how much love and support many of us may by lucky enough to have around us, only those who are going through this 'journey' can really understand its full impact on us both physiologically and emotionally.

[charliegirl in reply to Newdawn]

Dear Newdawn

Many thanks for these perceptive comments. The term "disenfranchised grief" is absolutely apt.

I think the forum occupies a unique position re supporting one another through hard (as well as good) times. There is something safe about using a pen name, allowing one to express oneself more freely than one might otherwise risk.

[Cllcanada Top Poster CURE Hero in reply to PaulaS]

I totally agree about B12 test.. it got me off Effexor XR, ( aka Side-Effexor) that made me feel like a zombie for years...

I'm now on bimonthly B12 injections,which are in very short supply in Canada... but that is another problem....

Certainly, Richter's adds another dimension to CLL, but talk to your doctor, there is help for depression ... please seek it out.

[norahmaria in reply to Cllcanada]

Thank you chris, ive made an apt to see my GP and will also ask my consultant about the b12 trest when I see him in 3 weeks time

[RemingtonSteele]

Yes, you are fine taking them. It doesn't hurt and actually, if you weren't depressed before (I am clinically depressed, a brain chemistry thing) the initial diagnosis makes you that way. My doctors know I'm on them and have no problem with it.

[norahmaria in reply to RemingtonSteele]

Thank you so much.

[brad7]

Ive been on antidepressants for 20-30 years its a Vietnam thing, I was also diagnosed CLL 6mths ago Im 67 years old, there doesn`t seem any problem from my doctors.

Im on wait& watch

[norahmaria in reply to brad7]

Thank you. Ive resisted seeing my doctor for so long but think I need to make an apt

[alice111]

My husband takes several different anti depressants and this does not appear to have any adverse effect on his CLL. I addition he has pernicious anaemia and has vitamin B12 injections to treat this...His depression seemed to improve once he started the injections so B12 might be helpful..best of luckxx

[norahmaria in reply to alice111]

Thank you alice, I will defo get some help.

[Newdawn Administrator]

Norahmaria, I'm not sure about the chemical interactions and would leave that advice in the capable hands of your medics but it certainly sounds as if you would benefit from some help and vital vitamin checks to rule out deficiencies.

You've had so much to deal with that a low and at time anxious mood is entirely expected and very human. We may all sound chipper on here most of the time but I'd dare predict there isn't one of us that doesn't have an attack of the gloomies and the odd wakeful night be it from discomfort or worry. I certainly do. Clearly some people suffer terribly with depression for a number of reasons.

Clinical depression is quite different of course and needs careful handling. Reactive depression to devastating life events can leave us feeling the need for support both pharmaceutical and from 'talking therapy'.

I'd speak to your doctor and consider counselling alongside any medication he/she may be able to suggest. If you can exercise at all it releases the endorphins and raises mood. But I'm sure you've considered all those options. A combination of counselling combined with medication seems to yield better outcomes from everything I've read and witnessed professionally. I don't know if that's a funding issue which would cause a problem where you are but if it's possible, it could help.

Of course one of the side-effects of anti-depressants can be sleepiness (especially initially) and probably the last thing we CLL'ers need is induced fatigue! You'd need to discuss that possibility with your physician.

Sending strength and warm best wishes to you.

Newdawn x

[norahmaria in reply to Newdawn]

Thank you for the advice newdawn. Im findong it very difficult to sleep at night which is making me very tired in the day . My son has a history of clinical depression so unfortunatley I am aware of the symptoms. I will seek advice from my consultant first. Best wishes.

[norahmaria in reply to norahmaria]

I think another issue is that (for me anyway) is that we put on a 'happy face' to spare our loved ones further worry and sometimes because of that people, understandably, think you're fine, youve had your treatment and are 'back to normal when psy hologically and often physically your far from feeling 'normal'.

[Newdawn Administrator in reply to norahmaria]

I absolutely empathise with those feelings and it sounds like what you've been through has almost left you in a post traumatic state which wouldn't be unusual! You've had so much to battle and things to concentrate on that now there's a lull it's hard to make sense of it or feel safe again.

I notice you're in the UK Norahmarie. If you did need support and someone to talk to, perhaps Macmillan could help on their freeline. Here's the contact number;

m.macmillan.org.uk/article/...

Being unable to sleep at night must be wearing you out too so hopefully your doctor may be able to prescribe something to help. Best Wishes,

Newdawn

[norahmaria in reply to Newdawn]

Thank you for your kind words of dupport. Have made an apt with my GP

[buckinhard]

Hi Norahmaria !

I've taken antidepressants since way back in the 80's, in my 20's. Tried different ones, finally found

Effexor XR (extended release). I do well on them and need them. Like RemingtonSteele said " It's a brain chemistry thing" for me too. When I move up to a higher dose, which I recently have done 2x in the last 7 months, I always take the new dose in the morning since I don't sleep well initially, then in a week or two, I can take the new dose at night. My new heme/onc knows I'm on them. I will need them for life, sometimes people need them for a longer period and some need them a short while. I also have started taking Silver Centrum for women over 50. I'm pretty sure these vitamins have helped me physically. Definetly talk to your doctor. All the best to you and I'm so happy to hear at this point, you're managing the CLL.

Denise

[norahmaria in reply to buckinhard]

Thank you for your reply denise. Im very intested in your comments re silver centrum. Im seeing my GP next week so hopefully she will be able to offer me something to help. . Best wishes

[Berrytog]

Hi

I have been reading all the replies to your question and although I have never taken any anti-depressants I have a lot of experience with those that have. They do work if you want them to but it is better to deal with the sourse of the depression if you can with 'Mindfullness' or CBT. Anti-depressants can make you feel a lot worse initially even suicidal in younger people. you can increase your seretonin levels by vigorous exercise in the gym or diet (bananas) but as a short term instant fix if GAD is at the root of the problem or even PTSD I would suggest an anti-Anxiety pill such as Clonazepam, it gives an instant lift and lasts about six hours or so. If ultimately your GP prescribes an anti-depressant then an anti-anxiety pill may help while they kick in which can take several weeks over which time your dose may gradually be increased. If nothing else Clonazepam will give you a better night's sleep and more preferable to a sleeping pill which of course do work as well and a good proper night's sleep works wonders.

[norahmaria in reply to Berrytog]

Thank you for comments. I too have had experience with depression with a close family member. I have resisted getting help for a long time but feel I do need some help, im ibtetested in the anxiety meds you mentioned . Will see what my GP has to say . Cheers

[speckly]

Hi all I take duloxetime branded Cymbalta for anxiety which is also an antidepressant .also advocate Mindfulmess it is an amazing way of being . Am interested in B 12 test as not actually had that. Will ask at Leeds when I go at the end of the month. Have anaemia but can't stomach iron tabs! PS am on w and w for last 6 years.