Treatment timeline

[AstraP]

Husband's haemoglobin has dropped to 10.9 and platelet count is at 68,000. He is otherwise completely fine. The doctor has recommended immediate treatment. But we're wondering if it can be started after 15-20 days? We're travelling and all arrangements are done. Should we also consult another expert?

[annmcgowan]

I was in this position last year despite platlet and haemoglobin drop I felt great but needed treatment. I did get a second opinion treatment needed confirmed. A few weeks later i experienced a haemolisis and ended up in hospital with AIHA. Only in a few and I was ok. Started Ibrutinib and rituximab on FLAIR trial now and doing fine. I would not have wanted this to happen outside of my home in the UK. It is always wise to get a second opinion when treatment time comes around. I am not an expert but it does sounds like it is needed. I hope this is helpful to you. The decision has to be yours.

Good luck

Ann

[AstraP in reply to annmcgowan]

Thanks that does help.

[AussieNeil Partner Founder Admin]

Generally there's not that degree of urgency, but it depends on how quickly your husband's CLL is worsening. He has already passed one trigger for starting treatment (platelets below 100) and his haemoglobin is approaching another (under 10).

Neil

[AstraP in reply to AussieNeil]

Does this kind of situation mean that his condition is very serious? He's other wise completely fit. Our doc says that stages in CLL are not the same as they are in other cancers. Still...I can't help feeling apprehensive. His WBC count is stable and has actually lowered slightly.

[AussieNeil Partner Founder Admin in reply to AstraP]

CLL is a Chronic illness, so there's generally a wide 'Treatment window'. As JM954 mentioned, it's much better to go into treatment feeling well (and with sufficient blood count reserve) than feeling dreadful. Going into treatment towards the end of the treatment window does increase the likelihood of needing transfusions to get through treatment, particularly on the older chemotherapy based ones, like FCR and BR.

Neil

[Shedman in reply to AussieNeil]

My consultant sets preferred haemoglobin start of treatment level at 11 -- in the likelihood that haemoglobin will fall during treatment, starting at 11 gives a little more 'comfort zone' and better chance of avoiding blood transfusions or simply of feeling far worse during treatment..

[Jm954 Administrator]

Hi and welcome again.

This must all be coming too fast for you at the moment with such a recent diagnosis for your husband. Annmcgowan has made an important point about getting a second opinion but that depends on if you can find a specialist not too far away from where you are in India. No point in getting a second opinion from someone who is not a specialist.

You say you are travelling but don't mention how far and for how long which might be important. Have you discussed your travel plans with your Dr, would he agree them and do you have travel insurance that will cover your CLL? If your Dr advises against the travelling then it's very unlikely that you would be covered by any insurance.

One last point - you don't say what treatment has been recommended but it's much better to go into treatment feeling well than feeling dreadful. It makes it much easier to cope with.

best wishes

[AstraP in reply to Jm954]

Travelling for a couple of weeks in Europe. Our doc says that nothing may happen, but then do it for peace of mind and he will have to do it anyway. ANd yes, It all seems to be happening so fast

[Jm954 Administrator in reply to AstraP]

Lots to think about.

Sending best wishes to you both.

[MsLockYourPosts Passed Volunteer]

So many things to consider, starting with how fast the changes are taking place and what your husband's doctor thinks. Is it possible that a boost of platelets and HGB would make a difference!

If something went wrong while you are traveling would insurance cover your husband's care and, if necessary, a medivac flight home for both of you? Will you be in areas with major medical centers? Does your doctor have connections with any of those centers?

So disappointing, if you have to cancel your plans, but do what's safe! A friend traveled from New Zealand to the depths of a forest in Alaska. His HGB completely bottomed out. The ranger / paramedic there told him to hire a plane to get himself to a major hospital and forget the cost until later. His HBB was so low that there is a good chance that he would not have made it if he had ignored the advice and gone out by land. He's home now, will probably travel more (it's in his blood), but I'm sure he will think about precautions more, also.

Let us know what you decide.

[AstraP]

Just an update here for the kind souls who responded. We did take the trip (I thought Europe would be safe in terms of medical help and hygiene). Looking back, I don't if we were brave or foolish. The good news is that he was fine -- no tiredness or infections. Started treatment immediately after coming back. He's had one round of chemo. Will post later in detail.