Hi All
Hope your doing ok .
I had my CLL video call 3 wks ago , my Heomoglobin has dropped to 8 from 10 and white blood cells now 79 , also said probably will be starting treatment within a year 😢. Did mention blood transfusion!!. Terrified and awful anxiety . Otherwise feel well . Next app early August , has requested a T cells blood test to be sent to UCH . Just wondering if any one else is going through this !! .
Take care.
I have been through this several times. It always seems to be when I’ve been feeling good since the last visit. After I share I feel great he drops the hammer. “Well, your results are telling me a different story”.
Then I learn my lymphocyte count has risen a fair amount, and my hemoglobin is heading in the wrong direction.
Each time, my CLL specialist says: “ We may need to consider starting treatment. But let’s wait and see if it’s a trend”.
Then next time, it’s not a trend.
A few things help me:
1) CLL is rarely an emergency. If the docs can wait 6 weeks to 3 months to see if it’s a trend, it’s not an emergency.
2) He told me not to worry unless he is worried.
And 3) From Hagrid talking to Harry:
“No good sittin’ worryin’ abou’ it,” he said. “What’s comin’ will come, an’ we’ll meet it when it does.”
Hi there Thank you so much for your reply , it has put me at ease and also with the 3 things you have mentioned , and your specialist view . So true worrying is not going to change things.. . I am not suffering with tiredness .
🤗
Hi Stavrou,
That you feel well is a very encouraging sign. If your haemoglobin drops below 8, then you do qualify for red blood cell transfusions to protect your organs from damage from inadequate oxygenation. (I needed a couple during my treatment when that happened and other members have reported much lower haemoglobin counts than you.)
I would expect that you are now being monitored more closely with more frequent blood tests? I would also hope that your consultant has looked into why your haemoglobin is this low and that it's due to your CLL, not Autoimmune Haemolytic Anaemia. (They may have done a Coombes or DAT test.) Has your consultant mentioned likely treatment choices?
Neil
Hi Neil Thank you so much for your reply and encouraging news. Sorry to hear you had to have blood transfusion during your treatment.
My next appointment is 3 months from last One. Only mentioned blood transfusion at this stage , depends on next b/test. He has requested xtra blood test to be sent to UCH in London. Am not sure if i have had a DAT test!! .
Many thanks once again .
😊
Couple unit transfusion would help you. HB needs to be above 100 or you will feel the effect of anaemia. It may be time to get second opinion. If HB is dropping it normally indicates that the bone marrow is struggling. My HB and Spleen size was the trigger for treatment, and I went into Ibrutinib for 18 months, and my bloods are now normal. Personally W&W for me was weight loss and fatigue, and then treatment was amazing. Within 24 hours all my symptoms disappeared, and within a month my weight started to rise. Bloods dropped, and lymph’s swelling reduced in a few months.
Hi there Thank you so much for your reply and advice . So pleased things went well for you. My weight is kinda stable , as for the spleen , i get the occasional pain. As some one has suggested to ,
get a second opinion. . Have a good weekend and thank you again. 😊
Did you have to have a bone Marrow biopsy ? .
HiI was diagnosed with Hb of 80 and had an immediate 2 unit transfusion, pretty painless to be honest. Went straight to O and I one week after that. Was in remission and clear within 240 days. Now live a full pre CLL and Pre Covid life style, only reminder I have of my condition is monthly bloods and daily acalabrutinib.... stay positive, enjoy life.
Good morning Steve Thank you so much for your encouraging reply . So plesed things went well for you .
Are you in the UK? . I will ask my GP to do blood test, as my next CLL is not for anouther 2 months . Hope you have a wonderful weekend. 😊
Cheers , yes UK
Hello Stavrou1
I am just popping in to see if your bloodwork reflects your iron level? I know CLL is reflected in different blood results. But, I ask because I just wonder if doctors also check for other causes of the heamoglobin drop. (I haven't always had the best of docs so I always ask.)
I don't have Cll, my husband was diagnosed in 2020. But, I am anemic so just as a side note, I figured it couldn't hurt to ask you. I felt much better after only a few weeks of iron supplents and vitamin C that helps absorb it. No magic pills, I know but also changed our diets with the cll. Lots of fresh veggies/fruits, minimized carbs, no diet soda (hubby loved diet pepsi).
Best wishes headed your way.
Cookie
Hi Cookie Thank you for your reply and thoughts . I am pleased you have ask . I am sorry you anemic and hope your managing it well.
I am sorry to hear about your husband , and hope he is well....
Unfortunately when one the Dr specialist told me , my mind went blank to ask him what might be causing it !!. However just looked at my next blood test form, my next appointment is 2 months not 3 !!!..I apologise for this stupid error..
He is requesting genetics?tp53/17 deletion.bone profile-FBC-LFT and renal function test which is going to UCH in London. As many of you
have suggested a 2nd opinion, I will do that ...ASAP. I have also changed my diet ..less carbs as probably got in to bad habit eating to much . . I am on a prescribed Iron tablet for last 6 months , and take vitamin c suppliment.. .
Thanks again. 😊
Stavrou sorry but extra vitamin C is not recommended with CLL. I forget the reasons, but I am sure someone more knowledgeable can add to this.Colette
There are concerns originating from a statement by Dr Susan Leclair, that vitamin C can stimulate your lymphocytes, so could increase your CLL tumour growth. Dr Leclair has produced many excellent videos explaining the relevance of different blood tests with respect to CLL.
Stavrou, with CLL, it's best not to take supplements unless your doctor/specialist recommends that you do so based on blood test results showing that you need them. Time and time again, clinical trials have shown that it is far better to obtain vitamins from food, rather than from supplements.
Neil
Thank you Neil. There are just some facts/names etc that never stick in my memory, and this is one example.
Colette
Hi Neil Thank you so much for that information. I take that all on board . Does makes sense.
😊
Hi Stavrou, I'm at a similar point in my journey - like you with low haemaglobin.
I'm a bit surprised that your doctor doesn't want to investigate what's causing your low haemaglobin (like AussieNeil suggested).
In my humble opinion, it's irresponsible and dangerous to let you wait for 3 months and a blood transfusion might be helpful but it won't deal with the problem (what's causing it), it will only deal with the consequences.
You need to seek a specialist as they really need to check your ferritin levels, AIHA. It's probably your CLL causing it and in that case, you might need to start treatment very soon.
Please get a second opinion. Ask your GP to refer you urgently to a CLL specialist of your choice - if you let people know where you live (roughly) - someone will definitely suggest a good CLL specialist.
All the best, hope they investigate quickly and find some solutions for you.
Hi poodle Thank you for your reply . Am sorry to hear your in a similar situation and so young .. life is not fair at times!! . Can I ask what's causing yours if you know ?. I have taken everyones feedback and comments seriously. And have noted them also to check ferritin levels and AIHA. Absoubtly agree they need to find the cause. I am now in my menopause , for 2nd year , could this have any effect !
Thanks again. 😊
You are right, life isn't fair but I still wake up every day and this site reminds you from time to time that it's not granted...so I'm grateful there are treatments that help us...
It's now very obvious that mine is caused by CLL. I had low ferritin and haemaglobin levels and iron tablets worked at first (for about 2 years).
I then had iron infusions and they also helped to increase my haemaglobin for about 1-2 months. Everything else was ruled out. I also have an enlarged spleen (again a result of CLL) so it's time to start treatment otherwise my haemaglobin would just continue to drop. Blood transfusions are not a long term solution. My consultant said the treatment will make me better so I hope and believe it will 🙏🏻
My haemaglobin definitely drops at the end of my period and I also bleed more, maybe as my platelets are also lower...
Not sure if your menopause could be blamed for your low haemaglobin though. I do think it's very likely due to CLL. I'm glad you are on it. Haemaglobin below 100 can signify it's time to start treatment I believe.
All the best. Keep us informed.
My HgB was always a bit below normal. Now I take FolivanePlusCap pills (Iron +vitamin) every other day and the Hgb is in normal range. But to avoid constipation due to the iron, I also take daily a Colace pill (stool softener), drink some prune juice with some psyllium fiber. I sort of talked my hematologist into this after he had only prescribed the Folivane during one more deeper drop of HgB.
Hare and Tortoise: AIHA and CLL
Just been told my husband has cLL can anyone give some information 
Remission or Relapsed CLL? please help!!!!
CLL and ischemic cardiac disease.
CLL replication rate
